AnonymousJune 26, 2008 at 6:29 pm
Hi everybody. I was diagnosed with CIDP in 2000. My family doctor sent me to the neurologist after I had told him I couldn’t feel wet/dry and hold/cold anymore. After a battery of tests, EMG, spinal tap, lab, etc. he diagnosed me with probable CIDP and put me on high does of Prednisone, Neurontin and Imuran. My first year was complicated. About the same time I was dx, my husband was also dx with stomach cancer and I took him to U of M for surgery and it ended up being an open and close due to severe metastasis, so now he endured the chemo, radiation, and I became his primary care giver. His final wish was to die at home and he did 9 mo. later in Jan., 2001. I was so stressed taking care of him and not taking care of me, that I had pneumonia during his funeral. The neurologist had taken me off work immediately. I had been an RN for 32 years and looking back on it now I wonder if I had the demyelinating process starting for at least a year before I told my GP about my problems and started on treatment. Anyway about two weeks after my husband’s funeral I told my neuro., “Now you can take care of me”. I started on my first ivig at the hospital about 5 days later. Initially I received it about every 3 months–didn’t do much research into cidp then-trusted my neuro for everything-maybe a big mistake, but at the time I had lots on my plate. Had a 2nd opinion at U of M to confirm my dx of cipd and tx remained the same. When my husband died all our income died. I had filed for disability Medicare, initially was refused, hired an attorney to help me, and it took 3 years to get it. By then I had depleted our entire savings that we have saved for traveling and fun stuff you get to do in your golden years when you retire(yah, right) and maxed out credit cards just trying to pay my $10,000 a year medical bills. And I developed serious side effects to the prednisone-I ended up with a blood sugar of 600 and was in ICU for several days and dx as steroid induced diabetes and it took a miserable 1 1/2 years to wean off the Prednisone, also had frequent bronchitis and pneumonia, developed osteopenia, despite Calcium and vit D, and had severe UTI with sepsis 4 months after my diabetes dx. I didn’t know who me was anymore..and my family was threatening a nursing home–I fought back, had already lost my home and had to give up my beloved lab, Zoe. Progressed up from a walker/cane to walking better. Liver biopsy showed medication changes, so I was taken off all my meds that were processed through my liver. Felt stable for a couple years. This year ended that feeling. I now receive ivig monthly, but the brand was changed this spring and I have had severe headaches, nausea and vomiting, back and abdominal pain, weight gain of 20#, back to drunk walk and using my cane. Last week I saw both docs, demanded some answers(no more trust, doing lots of cidp research, and reading your posts), argued with my neuro – his exam was I put each knee up and he pushed down and that was all- I was so angry when I left, but I had answers.(more lab and bone density; he said another EMG was useless). He decided I had adverse reactions to the ivig brand (only thing we agreed on) and he changed it back to Gammagard and home ivig, which I had my first dose today. Slept poor, worried about the ivig, premeded with DCN, same amount of Tylenol as Tylenol ES, and Benadryl. I had previously premeded with Motrin, but developed rebound headaches, so off that. Got a headache again this morning during the ivig, but not as severe as before. Took a nap and a Motrin-it does help if I take just one 800mg. and I woke up with no headache. My neuro also wanted to change me to Cymbalta and we “discussed” Rituximab, but I googled them and called his office back and said no to both, I am battlying the other ivig side effects and didn’t want any more changes..want any of your opinions to this long story,sorry, needed to vent and discuss. Had been doing stretches and home exercises until this spring-have had little energy. Would home PT help or message therapy or Chiroptactor help me? Have any of you tried the ReBuilder? My current Neurontin dose is high(1800mg three times a day), Imuran 50mg. twice a day(had to reduce from 100mg -WBC count got too low, and my ivig dose is 45 grams daily x 4 days every month. I take Calcium with D, vit C and B1, K, and fish oil that I started this week. Thank you for reading my story. I miss nursing so bad, but really know now that I can’t go back( my thought process is so bad now. My multitasking consists of getting out of bed and making the bed, bathroom, coffee and get my oatmeal, gather energy to shower and maybe, just maybe I can do all this in 2 hours. Hoping to stabalize to try one thing I found was http://www.my ticket to work at home.org. I have numbness/tingling from both my knees to my feet and my fingers(don’t feel cuts or burns till I see the redness and blisters or see blood. U of M thought I might get feeling back in my legs, but haven’t and have lost the spacial awareness of where my feet are-fun). I still drive maybe once a week. Was an avid reader and walker. Have music on most of the day and that is my new goal-my girlfriend of 36 years(thank God for her) and I have tickets to see Neil Diamond Aug.1. I will get there if they have to drag me to my seat. Again I am sorry this is so long, hard to condense 8 years into a short story. Help/comments anyone? Some of you are already my favorite posts to read. Norb, your car looks pretty cool. Thanks everyone for being here. Emma
June 26, 2008 at 6:53 pm
Sorry you have gone through so much. But you are on the ball and inquiring, that is worth its weight in gold. my 11y/o has cidp and is on the monthly schedule like you. Based on the numbers you give, I assume you are in the #200lb range, so that tells me your doc is giving you loading doses, you are lucky about that, most docs don’t (ours does too) The thing of it is, you may need it closer than 4 weeks, if you also are taking imuron. The monthly dose may not be enough initialy to see a difference. Eventually, you might be able to space it out a bit. I have read several abstracts that suggest the frequency is more important. Maybe you can ask for every three weeks and see if it improves. For some, it does take a few treatments (months) before they notice a difference. Regarding the rituxin, I think that can only be approved through insurance if your cidp is a result of a certain type of lymphoma, check posts by a member named norb. So you do not have to worry about that.
Kevin too has the awful time w/headaches. Plenty of fluids a day prior and continuously throughout help. Additionally, we do 2 reg stregnth tylenol (stronger than one extra) and benadryl, 4 hours later we follow up w/ aleve. We used to take motrin, but on the reccomendation of With Hope member, we switched and it has helped. Kevin has had this for 21 months now and we have been doing ivig regularly now for 8 months and last month was the first time he did not get the aseptic meningitis reACTION. I suspect the aleve has made a difference as well as his body is tolerating it. One other thing, I assume you get gammaguard liquid, not s/d (powder) as well, I assume the flow rate is slow. Good luck!
AnonymousJune 26, 2008 at 6:56 pm
Well Emma, from one RN to another, Welcome! There are several nurses on this site so you will some comrades. This is a wonderful site with lots of information, support, Norbs car:), and just an ear to listen.
I have to tell you, my neuro also signed papers for disability for me, however, I just got off the phone with them today and because I ride a trike for exercise they are doubting my disability. I am so cranky right now, I can’t stand it. AND I had IVIG today so am with a headache too. BUT I looked up the site you listed and holy cow, there is a lot of stuff there. A couple of us were just talking about new careers, etc. since I sure still think I am a good nurse even so I don’t walk well, etc.
Anyways, that is what happens here, people share, learn, etc. I hope you find the support you need and I might just owe you for the website info:) Take care, Gabrielle
AnonymousJune 26, 2008 at 8:49 pm
Dawn and Gabrielle, Thank you for the welcomes. Have had the ivig for almost 8 years now. Sometimes I have better energy for a few weeks then I go back to legs that throb and feel like lead. I’m anxious to see how the home ivig works, not only the brand change but conserving my energy and saving gas and driving. I was dragging by the 4th day. The gammagard is liquid but not convinced the rate is low-I got 450mil. in 2 hours. Going to ask her to slow it down tomorrow. Protocol is one thing but each of us reacts differently. No owing Gabrielle-maybe we all can find a niche on the website…good luck on your ivig tomorrow. Emma
AnonymousJune 26, 2008 at 8:52 pm
Emma, I get my IVIG once a week and I get it at home which is great. BUT i get 400 cc over almost 4 hours, sometimes 3.5. They did it once in a couple of hours and I was sick! I have them start my line now, and I give it myself so they can leave. I set up my computer, phone and water and usually take a nap. It works great.
AnonymousJune 26, 2008 at 10:21 pm
Gabrielle-do you have a peripheral line or a port? I watched as my nurse drew out all the ivig from 5 little bottles and then put it all in a bag and hooked it up to a PainSmart pump and protocol called for stairstep rates as we progressed till it was done. I couldn’t help but wonder how much ivig is wasted that way. I guess I feel like with my copay, I want every drop !! :rolleyes: She took q15 min. vitals, will have to talk to her about that weekly instead, then she can diswcuss with my neuro. Do have to say that I am having less throbbing burning pain my feel tinight and a nagging HA, but not throbbing one Take care. Emma
AnonymousJune 26, 2008 at 11:36 pm
Wow!!!! What a story. I sure hope you (Emma) are not with the same doctor as before. We as most of you know are also at the spot of getting a second opinion. Have not an appointment at Cleveland Clinic since we moved from Ohio to Tn. 3 years ago we decided this would be better for us. I would like to send records to John Hopkins also but not sure it is going to happen. One thing I have learned from this thread about the kind of ivig also does make a difference. My husband has had the initial dose of ivig , then 6 weeks later I believe I requested Gammaguard. I am going to look it us tomorrow as the infusion place did give me a sheet on it. This last time (yesterday the 25th and also the 24th)
he had Octogram or something like that . Wondering if that is why he is not feeling to good yesterday and today. Whiped out and achy he said. He has been tired right along but I could tell he felt worse this time. Thanks for the info from all of you. And Emma I pray you are getting better.
AnonymousJune 26, 2008 at 11:42 pm
[FONT=Georgia][SIZE=3]Hi Emma I glad to see you finally made it, I see you’ve already gotten responses to your post. I knew when I gave you the info on this site, you’d find some new friends, everyone here is most supportive. So I got one thing to say Emma Welcome to the Forum ! 😉 [/SIZE][/FONT]
AnonymousJune 27, 2008 at 12:12 am
Terry-thank you for the welcome and for referring me to this site. Finding some new friends for support….
JoanF-with me the ivig treatments didn’t always have the same outcome. I am glad you asked for gammagard( the last several months I was switched to Octogam) that you read about in my new thread.And as each month progressed my symptoms worsened. Your husband may react differently. They started me back on gammagard today. Discuss with the doctor what symptom you had with each product, and be very specific so he knows which product is best for your husband All my best, Emma:) 🙂
AnonymousJune 27, 2008 at 5:57 am
welcome emma. All i can say is you CIDP guys do it so tough! Your stories make me think i got out of it easy, which is saying something as i was completely paralysed on a vent and in a coma. But 7 weeks is nothing compared to your battles month in month out. You are incredibly strong and determined people and i just pray that one day soon you will all be pain free again!
AnonymousJune 27, 2008 at 7:24 am
I have read so many post about all of you that have cidp and how rough it is for each of you. I agree with montanasmum, that you are incredibly strong and determined people and also pray that you will one day be pain free.
The constant struggling you go through seems to be never ending.
Bless You All
AnonymousJune 27, 2008 at 8:17 am
I have a peripheral, and get phlebitis every time. But he said I am not a candidate for a port until I have no veins left. I think the IVIG comes in those little bottles and then they put mine in a vacutainer glass bottle. They had to stay with me the first one at home to make sure I knew what I was doing and that I didn’t react, but now it’s great. My son is also here in case of emergency. That would be a consideration on your part as well. Take care, Gabrielle
AnonymousJune 27, 2008 at 8:25 am
I read your post montanasmum and so many others and took care of new gbs kids in peds icu few years of my career and I thought what incredible stories and trauma you have endured when I read your posts too..I felt quilty and depressed when I first started reading this forum that I really felt like I had it pretty good, I mean my legs are “gone” and feel so heavy at times, the pain and numbness/tingling, burning, and the feelings sometimes that things are crawling up my legs and I walk into walls and use counters to keep balanced-felt like Artie on his bike on Laugh In last week-was gripping my 3# weights and I leaned forward to stretch out my spine and I fell into the couch!!LOL But despite the occasional pity part or feeling of hopelessness and letting the bad days happen I really truly feel blessed by God( even He and I argue once in awhile), I have a couple of GREAT friends, and I have a super GREAT son that is in the Navy-9 1/2 years now-that I am so very proud of-he has been deployed to Afghanistan after 9/11, to Indonesia after the psunamis, to South America to confiscate the drugs and sink the drug runners, etc. etc-his adventures keep me going and sometimes really humble me–he loves to take the kids candy whenever he is deployed to SE Asia-I only see him about once a year, if that, but when he calls-it just makes any day great for me. And now I feel like I have all of you to vent to and get help from. And I apprecriate that so much…….well time to go get ready for my 2nd day of home ivig..take care everyone and hope your day goes ok for you. Emma
AnonymousJune 27, 2008 at 8:39 am
Gabrielle-in MI anyway they recalled the bottles-minute pieces of metal were found but now they have them again. I live alone so no care giver-just me. Getting a little easier to ask for help-that was very hard for me-I have always been the giver, but my closer friends work fulltime yet. Time for day2 of the gammagard-hope your day is better. Emma
AnonymousJune 27, 2008 at 11:31 am
I just caught up on your posts and want to welcome you to the site. This is a very unique place in the world. I am a fellow CIDPer and former health care provider and currently am using Methotrexate for treatment as IVIG didn’t agree with me and steroids are out of the question due to being Diabetic. I am so sorry for all of your loss and pain and can’t imagine how difficult it must be to be living alone. I hope you find that being able to click on to us any time of the day or night provides you with the company, comfort and friendship that is always here for you. Good luck with the infusions and remember to take each day one at a time.
All my best,
June 27, 2008 at 12:37 pm
Emma is such a nice name, it sounds so kind. Anyway, I feel like a big doofus! You are a nurse, so you already knew everything I wrote.
Dawn Kevies mom
AnonymousJune 27, 2008 at 2:20 pm
Linda-thank you for your welcome. It is so good to have all of you to talk to. And Dawn-you are not a goofus. Ask any doctor or nurse which they would rather be-a doctor/nurse or the patient and I can answer for me that I want the nurse. By the way if you look up the meaning for Emma-it means ” nurse”-guess that was my destiny, huh? Had my 2nd home ivig of gammagard and boy do I have a headache, my head wants to blow up and my eyes hurt, so going to bed with some ice and my nurse told me to double up on the Darvocet and Benadryl tomorrow before #3 ivig-requested it be slowed down today-yesterday got 450 ml. in 2 hours and threw my nurse in a tizzy with my request, so she made some calls and I got it over 3 hours-today it was a little more than 450ml and she was going to stop it and throw the rest away and I told her I wanted it all, as expensive as it is and what my copay is-threw her into another tizzy. Geez-she went EVERYWHERE with me and carried the pump and the bag of ivig for me-it got hilarious after awhile-at the end my blood presssure was high (she took my vital signs every 15 minutes for 3 HOURS ) and my head was pounding and she made a quick exit–guess we both ended up in tizzies. She had 2 more ivig infusions today and about 2 hours drive time to each client and I was apologizing for asking for a slower rate! She is professional but a bit overprotective. Wherever I go, she goes, except I got to go to the bathroom by myself(yipee)-maybe I’ll do that tomorrow is stay in the bathroom:) This home ivig is proving to be interesting….well bedtime and ice to my eyes and cancel my plans for tonight,one of my friends died 2 days ago and another died last week–both had suffered and I am glad they are at peace and no more pain now, but I will miss them and just can’t make it to their funerals with an exploding head. Haven’t figured out how to reduce the stress in my life yet when it keeps following me so darn close all the time! Emma
AnonymousJune 27, 2008 at 3:41 pm
[FONT=Georgia]Emma I got to thinking back & I remember when my wife got the ivig for some reason or another she also got headaches. She als0 suffered from Migraine headaches some time they got so bad, I had to cover every window with dark sheets to block out the daylight. Her Dr later put her on Topamax which is a migrane prevention med, a little while after going on it she was seldom ever bothered by a migraine headache. [/FONT]
[FONT=Georgia] But she did get headaches from the ivig, I hope your pain never gets to the point Emma in your legs like my wife Debra had. It got so bad at times she got down on her knees & begged god to take the pain away. I can remember that very well, now if the Lyrica I’m on for the neuropathy. Would just take the pain from it away I’d be one happy person.[/FONT]
AnonymousJune 27, 2008 at 9:42 pm
Hello and welcome to our family. When you say U of M I assume you mean Michigan. Where exactly are you located?? I am in Ann Arbor and also go to U of M (Dr. Teener is my Neuro.). Anyways I am the liasion for Southeast Michigan and am available anytime via email, phone etc to help or just to talk. My email is [email]email@example.com[/email] and my phone number is 734-929-4653. Contact me anytime. Take care.
AnonymousJune 27, 2008 at 9:54 pm
HI DUST DEMON, my neuro gave me Topamax too at one point, but my headaches got worse, am like a lot of others here who have commented that we are in that 1 percent that get the side effects…a couple years after this all started for me, my legs and fingers hurt so bad and the palm itching, the tingling, burning, etc. got so bad I prayed for God to take me away, not just my pain. Saw my minister and he sent me to a counselar and my Beck score was over the top, and she sent me to my doc for antidepressants, and my family was scared, and so was I and I stayed with friends for a week-took a walk every day and thought things through and cried and finally got that suicidal thought out of my mind -never had it before in my life and never since. I am a pretty positive person but when so much comes at you so fast, it just overwhelmed me, to say the least. When my days get so bad, that’s when I am talking out loud to God (when you live alone, guess I talk out loud alot anyway)-I know God is listening and I tease him about his sense of humor for me when I have one plan for the day and He changes my plans all the time. I have a supportive family, a great kid, and some really great friends, but I still am a really private person and downplay my complaints and how I am doing to them, especially my son-he is so far away in the Navy and deployed so much-I know he worries about me but we don’t talk much about that and so much of his job is censored and he can’t tell even his mom about it-he knows I worry about him too. Maybe it is true what they say that it is easier to talk to a stranger than those who know you. I have talked to so many of you things I have told no one else. Not sure baring my soul is a healthy thing for me yet–sometimes it brings back all the stress and pain that I have endured once already…have all of you in my prayers now too-added you in to my friends area in my nightly prayers to God-He is listening–just hard sometimes to Let Go and Let God………..Emma
AnonymousJune 27, 2008 at 10:04 pm
Hi Jerimy, thank you for the welcome. Right now I live in Allendale, west of Grand Rapids, small country town but is home of Grand Valley State Univ, want to move back to Grand Haven next year and be close to Lake Mich. again. Thank you for your email and phone-I would really like to attend a support group and go to the Chicago syposium if I am stable enough. Nice to have you to talk to if I need it -can’t explain how much that means.. Emma
June 27, 2008 at 10:50 pm
Do you continue the pre-meds around the clock? I have Kevin take the pre meds 2 days post the infusion as well. Every 4-6 hours 6 days straight. Kevin gets 25 grams over 6 hours and 40 minutes four days in a row. his max flo rate is 39. If this company cannot stay for a longer period of time, switch, others will. We personally use Coram. Regarding being followed around by a pole and the nurse. You can request a fanny pac and everything gets lugged around with you. Then they have to pool the ivig. Kevin personally wants the pole because he wants to get all of it out of the glass bottles. I don’t know if I mentioned this before, but With Hope suggested aleve in place of moptrin and it did help Kevin.
You mentioned you have been doing this for 8 years, did you just start having the headaches? Glad you finally found us and jpoined us, there are many here that are so helpful. At one time or another, we have all bared our souls here and it usually is quite helpful. So bare away.
Dawn Kevies mom
AnonymousJune 28, 2008 at 1:29 am
Hi Dawn Keevies mom-Right now I take a Motrin during my ivig, but forgot as we were talking, but was taking the DarvocetN and Benadryl as premed and today I did take another Benadryl afterwhile before I went to bed. Tomorrow, Sat. she wants me to double my premeds and not forget the Motrin midway and see how it works. This co is my neuro’s favorite, so I will try this month. I can request another nurse or co if this doesn’t work out. and yes I have heard abt Coram, thanks I will keep that in mind. Does Keevie like his nurses. Are they good to you? and Kevie too? Will see how Sat and Sun go, and then go from there. Thank you. Have a nice weekend. Emma
AnonymousJune 28, 2008 at 1:42 am
Dawn-I will try Aleve next month if ok with my pharmacist with the compatability with my other meds. I haven’t been told to take the premeds around the clock, but will ask tomorrow. Thanks. I have never been premedded until this year She has a shoulder bag that she can tuck the pump and iv bag into, but she kept following me around holding both items in her hand. I am sure we will get a rouitine established and it will be fine; otherwise I will ask for another nurse or Coram or whomever takes my ins. Emma
AnonymousJuly 10, 2008 at 11:43 am
Hi Dawn, Saw my doc’s PA yesterday instead of him as I request, anyway his office called back 4 minutes before close what my doc wanted and didn’t want to do. Changed my home ivig to 45gm X 2 days every 2 weeks and he said no to slowing the infusion even though I was symptomatic, reason being that he likes to go with protocol! I was upset and immed. hung up and called my infusion co. They said they would call today after they were faxed the orders. I was prepared to change co. if I had to and write Jirimy for a list of neuro docs closer to me than U of M, and I may still do that. The co. did call me this morning and made arrangements for the ivig and she said they would infuse it at the rate I requested over 4 hours instead of the 2 hour protocol. So one hurdle jumped. Wondered if this seems like a continued loading dose for me? The PA was vague on that issue when I asked her. She said I was a combination of relapse/remit and progressive when I asked her. Vague when I asked her about premeds, so in summary I left there frustrated but hopeful she could check with doc and she said she would call me back. She didn’t, the office receptionist did!! So I’ll ask for your help and anyone’s at this point. Will try the every two week schedule and see if that makes for no down time, but how many days do you premed Kevie before the ivig, during, and after? And you use Tylenol, Bedadryl, and Aleve? I was using the Motrin during, but will try anything that helps me avoid those headaches! And do you hydrate with water, or anything else? Thanks so much. Emma
AnonymousJuly 10, 2008 at 11:58 am
You pre-med before the infusion. It usually takes about 30 minutes for meds to kick in. Some people have their nurses call when they are on their way & take the meds then. Others can wait until the nurse gets there to take them. We’ve done both. You need to figure out what works best for you.
Drink water or Gatorade. Pop (or soda, whichever you prefer to call it) dehydrates you so avoid that…try to avoid as much caffeine as possible basically as that is what dehydrates.
You need to tell your dr that PROPER protocol is to set the IVIG as to what each patient can handle. He’s trying to go by the guideline…not PROPER protocol. Does the dr realize how dangerous a reaction to IVIG can be? Maybe you need to Google it & print up some info & fax it to his office. Maybe that will set him straight. I’ve found the best way to deal with dr’s is to be VERY direct with them & let them know that you mean business. You aren’t some weakling coming to them. You are strong person who has done your research & wants to make sure that you are getting the best health care available to you!
July 10, 2008 at 1:56 pm
I don’t know, it all seems strange, Not sure, but I believe the doc must write the order and the pharm. has to follow. I don’t think they can change the orders w/o a script. So, either they are doing “something” or the doc is faxing new orders over. There is no reason why the doc should not want to slow the infusion down. I can’t imagine your insurance has hounded him down to the amount of hours for a nursing visit. There is no explanation. If you expressed your reaction and discomfort, in my opinion he has a moral obligation to change that rate for your comfort, but most importantly, your health. Jesus, Kidney failure, heart attack, what is he thinking. Since you are in this predicament at present, I would take this infusion and feverishly search for a new doc and infusion company. Although they are helping you, it makes me wonder how many other things they take upon themselves to alter. (Unless there is some discretionary leniancy a pharmacist has that I don’t know about, and of course that is possible. Perhaps there is a pharm. on the site that can chime in) About the dosing, he is actually very good about that 45g/2 days every two weeks is a monthly dose of 180g total which if you weigh about 198 puts you at a loading dose. So that is great, most docs try to do 1g/kg. Also, the fact that you are splitting it up 2 days every 2 weeks might even help with the reaction. We don’t do that with Kev because it is an extra stick and a twice a month invasion into his life. Then he would have to stay out of the pool an extra day (no water, soaking, 24hrs. after the needle is out) He also would think about it more. I try to keep this a reality to him, but not a constant reminder. Kevin takes the premeds as soon as the nurse comes, we do it every six hours , tylenol, 2 reg stregnth which is 125 mg more than 1 extra str. 1 benadryl, followed 4 hours later by an aleve so we have an overlap of meds and the aleve is taken every 12 hours. We do this around the clock, the whole infusion and 48 hours post, as Kevin’s reaction was 36 hours post infusion. If you slow your flow rate down, I bet you would have minimal reactions. Last month was the first time Kev had no reactions, well very little compared to usual. His flow rate is already really slow, 39 max, so I suspect his reaction was just Kevin. Maybe now, his body has gotten used to it and that is why he is beter. I would seriously contemplate a new doc and infusion co. Good luck!
Dawn Kevies mom
AnonymousJuly 10, 2008 at 2:00 pm
Kelly-I understand what premed means and my home nurse just called and we discussed what to try next week before my ivig. I am trying to figure out what works best for me, and as I couldn’t get decent answers from my dr or PA, I thought I would ask all of you. I am especially interested in what you take during the ivig and after, round the clock sort of thing. Benadryl is helping with my premed, but wondered how long you take it to help you or do you just take it as a premed. I did find IVIG issues for the neurologist, thanks to a website home again gave me and I made a copy for my dr and me. Thanks Kelly for your input. Emma
AnonymousJuly 10, 2008 at 2:22 pm
Dawn, you and I must have been typing at the same time. Do you give Kevie any additional Benadryl with the Aleve or just as a premed? I will stay with the plan for next week. When I got the ivig in the hospital, there was never an issue to slowing the rate when I got the headache, the nurse slowed it immed. otherwise my doc has never ordered a rate-just frequency and dose, and the nurse and I set up the rest. It has only become an issue since I started home ivig-and the co. did call this am and stated I could have it over 4 hours, so I will give them a second chance net week. In a dilemma with changing docs, because of my location and transportation issues but I will figure that piece out. Just don’t want to lose ground, but also have to wait and see what my ins. co. pays for the home ivig, nurse’s hours, etc. Once I get what works best for me premed,etc. wise and the financial piece of home versus hospital ivig settled, I think the home therapy will be so much better for me, and I can’t believe how one brand affected me so badly, but you said the shelf life is 42 days, so that brand should be out of my system and the gammagard in(asked the PA about it yesterday and she said “probably”). Thanks for your help. Emma
AnonymousJuly 10, 2008 at 2:37 pm
Emma – I must not have understood what you were asking. Most people only need to pre-med with Benadryl and either Tylenol or Motrin. A few people get a dose of Solumedrol before each infusion as a pre-med. Apparently Aleve works as well.
Emily gets Benadryl & Motrin before her infusion – nothing afterwards. When she got them at the hospital she would pre-med with Tylenol & Benadryl then after her infusion (4-6 hours later) she would get 200 mg’s of Motrin. Now we just use the Motrin beforehand & no Tylenol, since she’s at home & doesn’t have the reactions anymore. She does get leg pains during her infusion if she’s pre-med with Tylenol…thus the Motrin & no more leg pains.
Your problem is your flow rate. Once you get that under control then you’ll be able to better figure out what meds you need to take & when.
If you are getting 45 grams for each infusion then 1 infusion should last a minimum of about 5-6 hours, I would think. That’s just going by Emily’s infusion though. She gets 20 grams & her infusion lasts 2 hours 45 minutes & she goes fast. If you are getting 45 grams in 2 hours no wonder why you are having so many problems.You should be SLOWLY ramped up to max rate. Usually your max flow rate is only for the last hour of your infusion. Up til that point it’s a slow & gradual increase.
What home care company do you use? We use Critical Care Systems & there is NO way that the pharmacist would sign off on someone getting that amount of IVIG in such a short time. They have to cover their butts too & having someone stroke out from an infusion that was too fast isn’t something that ANY infusion company wants to happen.
AnonymousJuly 10, 2008 at 3:06 pm
Kelly, I use Critical Care too and the first day I got it:45ml/hr for 30 min;90ml/hr for 15 min.;180ml/hr for 15 min.; 270ml/hr for 15 min.; 360ml/hr. for 15 min., and lastly 399ml/hr. for 30 min. using a curlen pump.Total amount infused was 450ml. That ramping part was what did me in with a severe headache after the 1st hour. So the second day I asked to slow it down and my nurse got flustered figuring out the pump and my request, as she had a time limit of 2 more patients to do after me. And I just sat there and thought,”too bad, it’s me now”. Don’t have all her nursing notes on my chart yet to figure out how long she ran it, but still got the bad headache day#2, so day #3 she had me double my premed of tylenol and benadryl and the iv ran over 3 hours and I did better. Same plan for day #4 and got headache, but relieved with Motrin. All I asked my dr to order yesterday was slow the rate down, and he refused. I agree with Dawn about the moral issue too, that’s made me so mad, and I called Critical Care and she said she would call me today after she received the faxed order, and she did, and she said I would get it over 4 hours, as I had asked for. And I get my ivig next Tues and Wed. Last issue with my nurse was, more ivig in bottles than 450ml, and I flustered her again when I said, ” Hey at these prices, I want every drop “-she struggled with the curlen pump programming those last drops(about 25-30ml). I asked to have her again next week,ONLY because she is the best iv starter I have had in 8 years, but if she struggles with that ***** pump, then I will ask for another nurse…..also called Jerimy for some help with the dr issues–will see what he and U of M dr can come up with. Emma
AnonymousJuly 10, 2008 at 3:17 pm
Critical Care pharmacists are supposed to program the pump before they send it out to you. There should be a sheet of paper (in the millions of pieces of paper you get) that has the programming on it. The pumps are a pain in the butt to program though. Apparently there is some formula that they stick to. I’m not sure what it is though.
4 hours is still too fast for 45 grams, in my opinion, especially since you are having side effects. I would try it out & if you are still not feeling well then you need to have it adjusted again.
What office of Critical Care do you use? Ours is located in Wixom & the pharmacists are pretty good about figuring this kind of stuff out.
You should be getting EVERY single drop of IVIG sent to you. Even if there is some left in the bottle. They should not be sending you extra. It’s not hard to figure out 45 grams, so I’m not sure how you would end up with more milliliters than you were supposed to get.
When the nurse is at your house she needs to ONLY be worried about you. I cannot tell you how many times Emi’s infusions have been moved back because her nurse got stuck at someone else’s house. It’s the nature of the business. The time they say they are going to be at your house is a guess-timate. The nurse should know that & her patients should expect it. It’s rare that Emi’s nurse is here right on time…unless we are her 1st patient of the day.
My last bit of advice…get a port. It’ll save you from a million IV sticks.
AnonymousJuly 10, 2008 at 3:28 pm
Kelly, I use the same office as you. As to the extra-it comes in 5 small glass bottles-10,10,10,10,5mg-and then the nurse draws it out and puts into a bag and then gives it to me. I will try that next week and go from there. And you are right, that pump is so hard for her to reprogram whatever is left over, that day#4 she just threw out what she couldn’t give me!!!!! Emma
AnonymousJuly 10, 2008 at 3:32 pm
Kelly-forgot to mention about the port-they won’t put one in me until my veins are gone(Iasked). After 8 years of 7-9 sticks per week of ivig, some of my bruises are still visable from the last month. My veins and I barely have a chance to recover before it’s time again for another round. Emma
AnonymousJuly 10, 2008 at 4:27 pm
Well then you need to call the office & ask to speak with Steve, the pharmacist.
Tell him that some of your IVIG was thrown out last time & you want to make sure that your pump is programmed the right way.
What nurse did you have? I know almost all of them by now.
PS the port business is bull crap. The reason why people get ports is because their veins are bad. Talk to another surgeon. Do NOT go through your neuro…many times they don’t like ports. Emi’s neuro about had a heart attack when she got hers.
AnonymousJuly 10, 2008 at 4:56 pm
Kelly, I spoke with Steve yesterday and just now since I read your post. My nurse is Morna and Steve said he would have one of the nurses talk to her and discuss the pump issues and excess ivig. The port issues have not been discussed frequently between my neuro doc and me, but with the nurses. The patients I have seen when their ports are accessed with or without local anesthesia, seem to have as much pain as I do with an iv stick. The port will be a future issue, but I am trying to get present issues resolved first. Emma
July 10, 2008 at 5:35 pm
We don’t even pool, we get it straight from the bottle, one 20g bottle and one five or what ever configuration. As the botle comes to an end and beeps, we catch it right before and shorten the tubing until it is all gone and the same tubing stays in and then they just poke another bottle.
We use coram.
DAwn Kevies mom
AnonymousJuly 10, 2008 at 6:11 pm
Yes, Dawn, that is what they did in the hospital was spike the little bottles-for a short time we did that when the 1000ml bottles were recalled and pharmacy sent up the little bottles, then I got the big bottle again, then I got the little ones-seemed a bit disorganized and confused the heck out of me. I wasn’t allowed to leave the floor and I felt so closed in sitting in the tiny outpatient room with 4 recliners(?used last by?never saw them cleaned in all the years I had gone there), so when my neuro mentioned home ivig, I jumped at the chance. Now I just have to work the kinks out, get the right pre,during,and post meds figured out for me, and get a little stabilized-this stress is driving my pain up the wall-from mid calves down is constant pain-wake up hurting and no matter what I take or do, the throbbing pain is with me. Not a napper during the day, really try to rest, but it is hard to do when you are hurting, as you all well know. As many people as I have called today has increased the stress even more, although it has produced results-well at least I hope so-we’ll see next Tuesday. At least it doesn’t hurt to smile. Thanks Dawn and Kelly for your support and suggestions today-I used to call it brainstorming-now I call it friends helping friends. Emma
July 10, 2008 at 7:29 pm
We do that with the bottles at home, the home nurse just keeps switching out. The reason they vary the size bottles from time to time is due to shortages, they just send the amount in what ever denominations are available. Not surprisingly, the price for a bunch of 5g bottles is more than say one 20 gram! Of course!!! Kevie is getting his treatment this week, tommorrow is the last day, this time they sent 20g bottles and two fives. (25 first 2 days, 20 last two days, down ten grams!! Whooo Hoooo!!!
AnonymousJuly 10, 2008 at 8:36 pm
Dawn, does Kevie get gammagard? Interesting about the pricing on the bottles. My ivig delivery is tomorrow, so will check it out. Will call and ask about the availability of the 20mg bottles and if I can get it straight lined from the bottles also. Seems like it would be so much simplier and more sterile too. How is Kevie doing with symptoms this time, or too soon to shout YaHoo 2 treatments in a row? Is he still smiling about swimming and kissing the dolphin?:) Love that picture of him. Read the thread in here about ports-now more convinced to wait-really worried about the infection part-seems like when someone sneezes, I get bronchitis/pneumonia in 2 days-already so compromised that another chance of infection is one too many. Realize with each iv stick there is chance of infection too, but maybe I honestly am too scared to get a port yet. Emma
July 11, 2008 at 8:37 am
Kevin has a port, he has had it for 9 months. A good stick every time, only feels pressure of the push when the needle goes in. The Emla cream works great. I suggest you call gammaguard, or “Baxter”. They have a program called Gamma Assist. This is just a condensed version of what it offers. You get put on a list as an enrolle to a program that assures you will always get ivig even if there is a shortage, and you can keep trac of all ivig you use and build up these certificates (last 5 years, then you start over) that allow you to get ivig free (limited amount) should you ever be without insurance. Call for more detailed elplan. I have to jump in the shower, Joe the nurse will be here in 15 minutes.
AnonymousJuly 15, 2008 at 5:38 pm
Hi Brett-2 weeks, 3 days and counting-thank you for putting a smile in my day. Neil has the rep of being the most difficult performer to deal with in the arena (security wise) my girlfiend and I are going to see him at. But I can hardly wait, and it will be a good test for a post ivig headache, right?:D AND I personally think that doing things with your mom is terrific-those are some of my best memories of things I did with my son. Thanks for writing Brett. Emma
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AnonymousJune 21, 2006 at 3:30 pm
Hi everyone! My name is Vicki and I’m from Topeka, Ks. I have been a nurse for 30 years and this is my story. I’ve had symptoms of cidp for over 10 years, including the weakness in my arms and legs, pain in back, legs and arms, and extreme fatigue. The onset was gradual, so of course I thought eventually it would go away. Besides, as a nurse, I always worried more about my patient’s than myself. About 2 years ago, all the symptoms worsened until it was obvious to my co-workers that something was wrong. I was falling, having trouble getting out of chairs and not able to walk very far. I finally went to a neuro and was diagnosed. We began monthly IVIG treatments after a loading dose over 5 days. The symptoms improved after the first 3 months but then downhill from there. They are now doing nothing to improve my symptoms. My next treatment is next week and I DREAD IT. I’m in a small room that you can’t move around in and by the time the 5 hours are up and I can hardly get up and my legs don’t want to work. As expensive as these treatments are I think it’s time for a powwow with my doctor. I’m just thrilled I found this website. At least I know I’m not alone. thanks…Vicki
AnonymousJune 21, 2006 at 3:39 pm
I luv nurses, they God’s angels. Nice to meet ya *sneeks a hug* Don’t get down. I too have CIDP. I don’t always get the boost I need from the ivig. some infusions seem to do more that others… Anywho I’m just the greeter here today. If ya got some time to kill, u can follow me and meet some folks and such. Plus games and fun……..
AnonymousJune 21, 2006 at 3:58 pm
You may be like me. My IVIg treatments were working OK until they changed the brand of IVIg I was getting and went immediately backwards. They had to double my dose for two months to get me back to where I was. I now make sure of what brand I’m geting before my infusion.
AnonymousJune 21, 2006 at 11:14 pm
Thanks for the warm greeting and welcome. I look forward to learning on this website and meeting new friends. Also, thanks for the comments, mjport. I thought I was going crazy because my first three IVIG treatments were in powder form and that’s when I saw improvement. Since then they have been in liquid form and it’s been downhill! My doctor swears there is no difference, but I have to disagree. thanks….vicki
AnonymousJune 22, 2006 at 8:02 am
I am fond of saying I wouldnt wish this on my worst enemy. I am sad to say your not alone. There are good days though. I found IVIG to wear the living heck out of me and honestly dont know if it helps. It was worth a try however. Yeah your sorta stuck to that machine, I had mine done at home however after the first year a nurse came to my house which was so much nicerthan a hospital stay or day visit there.. I could use the walking pole to use the bathroom and watch my own tv somehow it seemed less invasive? fool myself? maybe but it was nice.. You might ask. I am always wiped out for a good five days after treatment. I think that is not abnormal. Its a tough thing for the body to handle. I did notice however it worked better than PP treatments for me and better than nothing at all. Patience, with yourself mostly, is a key. Go slow. Treat life like there is only one speed and speed isnt the word. There are a couple good docs who are members here. listen to them. Doc David comes to mind. They are excellent resources of info. My grandmother always says the first 100 years are the hardest. she is 91. I think heck she probably isnt half wrong.
AnonymousJune 22, 2006 at 12:57 pm
Hi my name is Janice Butler & I also have this dreadful illness. I was just reading about the treatments, and I wanted to respond, because I also had horrible headaches, to the point of throwing up, was so sick I could hardly hold my head up, and this was “[U]after[/U]” they chg’d me from the powder to the liquid formula, they also told me that it was not the chg in the formula but I knew different, since I’ve been taking these treatments for over 4yrs now. The company that makes the gammagard, for some reason chg’d it, and it has been the worst. My doc, who agreed w/ me, said that after 2 mths of having the same response ,this was not a bad batch, but the formulation making me sick, and he ordered the nursing company to [B]STOP[/B] giving it to me, they are now advised that they cannot give me anything other than what my dr has ordered. I have a treatment next week, and I’m dreading it, but I also know that w/out this treatment, I get worse. and I have been slowly going downhill for the last couple of mths, and it is awful, as I’m sure you know, all too well. I have asked this one time before, but no one has responded, but I would like to know [B]IF[/B] anyone else who has CIDP, have periodic swelling “edema” in their legs and especially in your feet and ankles. I do & I just don’t know IF this is part of the illness or something else. That was actually my 1st symptom, for over 4 mths, until it got so bad, that I had to go out & purchase a whole size larger shoe…. no joke.
But as for the formulation of the IVIG, [B]YES[/B] most definitely it affected me. They [U]DO NOT [/U]give me the liquid form now. Talk w/ your Dr about it, and see if he can chg you to a less harsher drug…
Please take care, and as I’m sure WE ALL know, take it easy, or you’ll pay….
AnonymousJune 22, 2006 at 1:00 pm
[QUOTE=vls]Thanks for the warm greeting and welcome. I look forward to learning on this website and meeting new friends. Also, thanks for the comments, mjport. I thought I was going crazy because my first three IVIG treatments were in powder form and that’s when I saw improvement. Since then they have been in liquid form and it’s been downhill! My doctor swears there is no difference, but I have to disagree. thanks….vicki[/QUOTE]
Vicki, I have responded to this email you’ve sent, my name is Janice & I wanted to share w/ you about my difficulties w/ the chg in the formulation, please take a moment to read & let me know what you think.
AnonymousJune 22, 2006 at 5:55 pm
Hi Janice, thanks for responding to my post. I’m sorry you also have CIDP. I’m finding a lot of comfort on this website the short time I’ve been on. The info you shared is very helpful in validating my suspicions about the IVIG formula. I’ve told my patient’s over the years when they didn’t feel they were getting what they needed from their doctors that they needed to start being their own advocates for care, as they were often afraid to say anything. Guess it’s time to be my own advocate! I must tell you I also have trouble with edema. My trouble is mostly with the heat. When I go out BRIEFLY my lower legs, feet, and hands swell, especially my fingers. As my symptoms worsened over the years, my tolerance for heat has dramatically decreased. There’s a thread I’ve read where many others seem to have this problem also. Take care of yourself. We will endure our treatments next week!!!! Vicki
AnonymousJune 23, 2006 at 6:31 am
Would you happen to remember about the thread where you read about the others having similar edema problems. My doc is also running a new bloodtest for something called: Amyloidosis. The nursing company came out to my house yesterday afternoon & took the blood. That is one thing that they are all having a problem w/ now, is getting the needles in the arm, my veins are so messed up from the yrs of being on IVIG. I am intelligent enough now to tell them to use the “butterfly” needle, that’s the only needle that will go in.
As much as I’m dreading next week’s treatment, I’m also looking forward to it, because I have gotten worse, I hurt all over my body now, and the morning are the absolute worse. All my joints hurt unbelievably, and my fingers will not bend @ all for the first 20 minutes or so, I have to work them. I use my hands all day @ work, so they have to work.
You mentioned your patients, what area is your profession in? If that’s not being too nosey. This is just so nice for me to talk w/ someone who understands everything I’m talking about.
Well Vicki, it’s early here in the south, and I’m just now getting my first cup of coffee down, so I’ll say bye for now.
have a Blessed day .
AnonymousJune 23, 2006 at 4:12 pm
Hi Janice, nice hearing from you! Sorry you are feeling so bad today. On page 3 of the CIP/CIDP discussion board there is a thread called CIDP AND HEAT/HUMIDITY. There are some very interesting comments. To answer your question, I was a cardiac nurse for 28 years, then rehab nursing the last 2 years(bad choice, too physical!). I have been off work 3 months now and am on a 6 month medical leave. It is great , isn’t it to have a place to share with people who understand. Please feel free to e-mail me anytime to visit or just share how you are feeling. New friends always welcomed. Take care….Vicki
AnonymousJuly 28, 2006 at 9:46 am
Welcome to the forum. I think it is a great one and everyone here is so supportive.
I too have CIDP, diagnosed in Sept 2005. Sorry to hear of your dx., none the less, glad you are here with us. I am also a nurse and like you, always put my patients first. I worked for 26 years and am now on SSD. It’s a bit hard to admit when we aren’t well.
Please feel free to email me at any time and know that you are added to my prayer list with all the other members here.
July 29, 2006 at 7:43 am
Welcome to our Family, Vicki!
I’m impressed that not only did you notice the difference but you discussed it with your doc. I’ve heard so many stories of people thinking something wasn’t right but did nothing about it. One thing CIDP has taught me is that we need to trust our own bodies.
I was barely able to stand, unable to hold my children, and had no stamina yet the doc told me it was normal after having a baby:rolleyes: Luckily, I have a great Mom who pushed me to see a doc (and ended up calling in a favor to get me in the next day, LOL!).
Since that experience, I have learned that I need to be more vocal with docs and that each of us are so very different.
I hope you find not only useful info, but a support system who is trully a big part of getting thru this illness.
AnonymousJuly 29, 2006 at 2:30 pm
hiya, nice to see fellow nurses here. unfortunately i have only been in nursing for five years now and planning to return to school for a masters then find something in the field that is less physically demanding. currently i am an acute dialysis nurse and i travel to all of the area hospitals to administer bedside dialysis.
yesterday i had an ivig infusion at home with a home infusion team. the nurse failed to bring the last 10grams of the medication. i asked her to page my neuro doc and ask if i could just administer it to myself. i have a very good relationship with my doc and he knows that i’m a nurse, so of course he was ok with it. so, i may look into having an infusion nurse place my peripheal line and get me assessed and started, then just finish myself. seems even less invasive to me. i’m starting to look forward to the infusion days, because i know i have a date with my sofa and television set 🙂
AnonymousJuly 30, 2006 at 1:19 pm
Nice to meet you. Congrats on continueing your education. Best of luck to you. I see that you are a dialysis nurse. Do you also do PP? A lot the dialysis nurses in FL also do PP.
Feel free to email me anytime. Sorry to hear that you also have CIDP.
AnonymousJuly 30, 2006 at 2:00 pm
Hi flower, yes it is nice to hear from other nurses, but as always sorry to hear you have to be on this site too. I admire you sooo much for what you are going to do with your career. I don’t recommend nursing to anyone anymore unless their plan is to further their education and go into management or be an ARNP. I’m an old diploma nurse who was very successful at what I did, management and cardiac nursing. But degrees are what they want now and with my age and illness I just can’t do it. Working the floor has gotten so physical and stressful, that before I was diagnosed I would fall at work; as the pain would consume my legs and arms my thought process would greatly diminish, and I started to worry I was going to put my patient’s in harm’s way. I’m very proud of my career and it is extremely difficult to give it up. So I congratulate you on your education choices. I hope your treatment is successful for you and you’re able to accomplish everything you want to. Take care and best of luck……..Vicki
AnonymousJuly 30, 2006 at 2:13 pm
Hi badmommy and thankyou for the warm welcome! It is so great to have a place to visit where people actually understand what you are going through. I love my mother to death but this is just an example of misunderstanding–she has been telling people I have COPD! Guess I’d better find the lung disease support group! Take care…Vicki
AnonymousJuly 30, 2006 at 4:12 pm
Sorry to hear that you were having a difficult day last week. No, I didn’t reveice any email from you. I know exactly what you are going through. It seems that all of a sudden so much has been taken away.
Please know that everyone here is extremely supportive and we will all be here for you and anyone else that needs their spirits lifted.
I look forward to hearing from you 🙂 . Feel well and get lots of rest…..
AnonymousOctober 15, 2006 at 7:47 pm
I am also new to this site and relativly new to CIDP. I had no idea such a condition existed until I received my DX. My symptoms came on much more rapidly than did Vickies. (less than 6 weeks.
I to experience sever edema especially toward the end of the day. My DR. Suggests that it is the result of the lack of normal musle activity in the lower leg which would normaly help in pushing blood out of the lower leg. I do notice that, I have to get up to go to the bathroom several times during the night and that by morning the swelling has gone down some. I do not know what we can do about it but I find exercise helps.
Typing is a real challenge. I have two fingers that respond pretty well to what I ask of them
AnonymousNovember 8, 2006 at 9:11 am
my name is Ruth Watson, I live in the Falkland Islands, I am 31 years old and married to Paul we have three boys aged 13,9 and 2. I was diagnosed with CIDP last December, I have been up and down ever since, I am on imuran at the moment and weaning off steroids, which I hated. the IMMUNOGLOBULIN works wonders for me I had 5 days of it 6 weeks ago as I went down hill very bad while waiting for the IMURAN to work. The last time I had this treatment was when I was waiting for the steroids to work. I have had 6 weeks where I felt almost compleatly normal, I am an Auxiliary nurse in our very small hospital, I have managed to return to work as a bank nurse, I work mainly as a district nurse, I love my job, this condition, has had one advantage for me, I have far more empat:confused: hy for my elderly patients, when they can’t do things for themselves. I just need to talk to someone with the conditon, I am the only one in my country with this, we only have a population of two and a half thousand people. My doctor is in Chilie I have to e-mail him for advice, as I only go to see him when I really need to because of the cost. I am going down hill at the moment, the IMURAN is not working yet, only been on it two months, the I.V. is wearing off, it usually only lasts 6 weeks, I have had 4 of these in the last year, my Doc does not want to give them to me too often, as he says they could stop working. Would love to hear from you and how you are, and what you do to cope. and anyone else for that matter.
all the best
AnonymousDecember 28, 2006 at 6:43 pm
Hi Ruth – Welcome! I am newly diagnosed (October ’06) but have had two courses of IVIG that have worked very well for me. I tried Prednisone in between October and December, but it didn’t do much except make me jittery and VERY emotional! My neurologist and I are now trying to come up with a plan that would alleviate a 5 day course every two months. Possibly only 1-2 treatments each month to see if it would prolong the effects as a kind of “booster”. We’ll see. Sorry that your doctor is so far away, it is very important to have that medical relationship so you don’t have to wait until you are so far down. It is terrific that you are able to work – when I start being symptomatic I am useless!! Hang in there, girl – you have a lot of people on this site that will give you support and answer a lot of questions. By the way, have you had trouble getting IVIG? I keep hearing from everyone about the terrible shortage around the world. I know that here in North Florida you almost have to beg for it – luckily my doctor is aggressive and calls around until she finds enough. Best of health to you!
AnonymousDecember 29, 2006 at 5:03 am
Vicki welcome, you are hardly a newcomer. Others are much more experienced with IVIG than I . CIDP can be fairly resistant to treatment, you may need to try steroids or immune suppressant anti cancer type drugs such as methotrexate, cyclosporin, mycophenolate or even Rituxan. DocDavid
AnonymousDecember 29, 2006 at 12:43 pm
Hi, I am also new to this site and Thankful to find it. My husband has CIDP for 1 year. We have now come to the point where IVIG is not working, (he is allegic to Predison) it was until Carmark took over so I guess I wonder if this is a lower grade, he is on cellcept but due to the pain in his legs he is also on a morphine pump. I think our Dr. is frustrated as what to do next. Everyone keeps saying go to Mayo clinic in Minn. but I am not a rich person I am just a working woman mother of a beatiful 13 yr old and taking care of her and my husband. I get so mad when suggestions to go some where else like just jump on a plane. My question is has anybody here had to resort to Plasmapheresis?
AnonymousDecember 30, 2006 at 10:49 pm
I dont have CIDP, but had GBS. My course of treatment was plasmapharesis, and I fully believe that it was because of these treatments that I recovered so well. I know I have been told that the reason IVIg is chosen more often over plasmaph. is that IVIg isnt as ‘invasive’ – not sure myself what that means. However, I know many who have benefited from pp, and some who have done so when IVIg didnt seem effective. Some swear by it, and there are some who have not had a good experience. My personal opinion here, as I dont know your husbands full health situation ….. I would definitely give it a try if it was offered to me. Obviously you would have to discuss it in greater detail with your doctor if he is suggesting this course, and weigh up the pro’s and con’s.
AnonymousDecember 31, 2006 at 10:43 am
Thank you so much for your reply, even though I do not have CIDP or GBS I am aware somewhat of what you all go through I see it with my husband. There is not much knowledge of these disease and it is hard to explain to someone as to what they are. Both of these diseases there is not much awareness in Dr’s on these, and maybe it is because I am from Kansas and not much technology here. Alison, could you tell me what and how many days you went through this pp and maybe what I can expect?
AnonymousDecember 31, 2006 at 12:45 pm
Normally a ‘course’ consists of about 5 treatments – oh im sure my terminology is all wrong …:p . That is to say they would do 1 pp treatment a day, and that lasts for a couple of hours or so. I had 3 I believe, and they stopped giving it to me because I had some complications with blood clots and siezures. If you want to call me Diana, please feel free to do that and I can call you right back from my cell which has free weekend minutes, my number at home is 703 365-8231.
AnonymousDecember 31, 2006 at 8:43 pm
I am on East Coast time, we are the first in the States to hit New Year 😉 .. not that it matters. We are spending a VERY quiet night tonight, no celebrations or anything. I am watching TV and doing some houshold chores, and my hubby is on the computer. I normally go to sleep just after 12, so am available for a chat anytime. Look forward to talking to you.
AnonymousJanuary 1, 2007 at 3:00 pm
I have had to “resort” to plasmapheresis, and I am pretty happy with the choice. Depending on your husband’s physiology, it might be could be a good choice.
Ali mentioned that plasmapheresis is considered invasive. If your husband can have good sized needles inserted into his arm veins, then it is not that much more invasive than IVIg.
I could write a long reply to your question of what to expect, but I am not sure if it is really appropriate to do so here. Private message me.
AnonymousMarch 22, 2007 at 7:50 pm
Hello out there! This is my first time so please bear with me. As my title states, I am as yet undiagnosed with anything, but came across CIDP in my internet travels and boy it seems to fit everything I have.
It started off last July when I started having sore feet (its hard to describe) but I could not stand still for any length of time, I had seering pains shooting through my calf muscles, muscle weakness, weak wrists, fatigue (I had trouble standing up to make my childrens lunches for the day and had to sit down when trying to dry my hair with the hairdryer the pain from my feet was so extreme), back pain, tingling, pins and needles, pricking sensations all over the body etc. This lasted for 7 weeks. Since then my symptoms have dissipated, although the sore feet and difficulty standing still has remained.
I have seen a general physician – all she wanted to do was put me on anti-depressants. Yes I was easily upset because I was tolerating all this pain and nobody would do anything about it.
Earlier this month, it all started again, the fatigue, muscle weakness and shooting pains in calves, feet always sore – can’t stand still for long and can’t walk long distances, burning feet, joint stiffness, back pain, bands of numbness across buttocks etc.
I’ve tried chinese herbs, accupuncture and reflexology, but nothing seems to eleviate my symptoms.
I have had a MRI of lumbar showing some disc degeneration but nothing to cause my symptoms. I have had an unremarkable EMG (although they only did the nerve part not the needle in the muscles) and the numerous blood tests I have had over the past 12 months have all shown nothing.
In about december last year, I went to my GP saying I wanted to see a Neurologist. Saw him in January and he tried me on Tegretol. This did nothing, so am now on Gabapentin. Have been on this now for 4 weeks with no affect, so he has increased the dose.
I see him again on Monday, but I am extremely frustrated that nothing is working and no-one seems to know what is going on with me.
I’m desperate to find out what is wrong with me, do my symptoms sound like CIDP to all you guys who are obviously experts in the condition.
AnonymousMarch 23, 2007 at 1:52 pm
Hello I am no I repeat NO expert but it does sound like cidp. But first thing I’d do is talk to your Neuro on monday. Ask him again if you could have another EMG this is how my daughter (Monica) found out she has cidp and the EMG was very painful not to frighten you. I would just explain to your dr that you want to know what is wrong and to do any tests possible to find out. I wish you good luck and am sorry you have no answer yet. Get back to us to let us know what you find out on Monday. Take care an await to hear back from you.:D
AnonymousMarch 23, 2007 at 8:27 pm
Hello…I’m new as well. However, I have noticed that I have had a lot of the same problems as others. I have rapid relapses…every two weeks or so. Sometimes I can utilize my arms & legs a little and sometimes I am paralyzed from the throat down. I’ve tried all kinds of treatments. I did IVIG for awhile and like you, it initially worked. However, it stopped being effective after a little while. I also tried plasmapheresis. It worked for awhile and then started to work against me. Now I get one plasmapheresis every other Friday and I get an IVIG the day after the plasmapheresis. This combination has done really well for me. I haven’t been paralyzed from the throat down in several months and I’m starting to gain some strength back to the point I can hobble around with a walker for short distances in the community. The plasmapheresis used to make me really sick, but the docs found out it was the smell of the citrate. Now they literally have me eat lifesavers throughout the treatment and I am fine. I also had problems with the IVIG, but now I am premedicated with tylenol and an injection of 25mg to 50mgs of benadryl a half an hour before the infusion. The infusion is run really slowly and now I don’t have any problems. I guess I should say that I do take 1000mgs of cellcept. I tried imuran and rituxin, but they didn’t work. In fact, the imuran caused some blood problems. I hate drugs, so I’m glad my doctor was open to trying a combination of plasmapheresis and IVIG.
Well…just thought I’d reply. Hang in there and don’t be afraid to have your doctor try various methods to keep the CIDP at bay.
AnonymousJuly 30, 2007 at 11:31 pm
Hi, I am new and have CIPD. Re IVIG, I take it every other week. I started
in a hospital after being paralyzed about neck down. I had it also at my neuros office and now at home. I think its better at home. I watch movies,
snack, and try to drink lots of water – its really dehydrating.
I find that if I sit up I do a lot better than if I am in bed. I make sure I am up for about
2 hours and I dont seem to get headaches and nausea any more. I also notice the
difference between premixed and not. I like it powder.
I do not benefit as well as I could since I have “Iga Kappa” which I
have difficulty putting into words. Essentially my blood does not accept
the treatment. However I am not paralized any more, and while I cannot
walk, I am a lot better off with IVIG than without it.
There are a lot of things I need to know and am glad to network with others
and share what I can of this strange disease.
My next stop is rituxan.
AnonymousJuly 31, 2007 at 12:45 am
Yes, my ankles and feet swell as well…not very pretty at all. I have CIDP
as well, but for the last ten years.
I also, do my IVIG at home, it’s wonderful. There is a smaller Baxter pump
that’s about the size of a fat wallet, enclosed in a rayon backpack that can
be used instead of the pole pump…while I’m on a 100gram bag for 24 hours,
I go outside, get my mail, make lunch, etc. It is called a camin pump, it runs
on a 9 volt battery that at midnight I change for another one. My home
health company supplies it.
Also, if you are on the IVIG therapy, you might want to think about a chest
port. My veins collasped as well, so the port was put in under my collarbone
over my right breast. It frees my hands to do anything. Especially when you
need to use the bathroom from the IVIG.
Miami Girl 😎
AnonymousJanuary 1, 2008 at 6:49 pm
Hi everyone- Another newbie here. I was diagnosed with CIDP about 2 months ago, but, have had it for 2 years. I realize I’m lucky it only took 2 years for a diagnosis. Even though the Mayo worked on it, it was my GP with the help of other doctors that caught it. I am just trying to come to grips with living with it. Its frustrating, being mom of 4, a farm wife, and a crew chief, and now, going back to school.
How long does it take you all to accept it, and learn to (forgive the word…) manage it? Also, does your CIDP seem to be progressing fast or slow?
AnonymousJanuary 3, 2008 at 8:54 pm
A thread would be the same as a topic. If you want to start a new [B]thread (new topic),[/B] go to whichever section you want, eg. CIP/CIDP or Adult GBS, Underneath the blue bar that has User CP, FAQ, Member List etc on, you will see a little blue rectangular box that says New Thread. Click on that and you can start a new thread to ask a question etc.
To answer someone elses question, all you do is after the last reply on their thread or topic, click the little blue rectangular box that says “Post Reply” and you can type your reply in and click the submit reply button.
You are more than welcome to call me if you are still having trouble and want to talk. My number is 703 365-8231 eastern time.
AnonymousMarch 19, 2008 at 10:37 am
I’m Eric, I don’t inderstand “forums, Threads, Topics” etc, but I AM understanding more n more bout CIDP!
I was diafnosed in September, been on Prendisone 50 mg since. Worked, at first, but now Doc has me on IvIg, 5 day load, then a day a month, that isn;t helping at all and the Prend is killing me (but I relapse, almost immed if it reduces below 40 mg)
They dod the Nerve study/EMG and LP, it all matches CIDP. As do9 the symptoms, but I can’t help but thinking they asre barking up the wrong tree? Since the IvIg is having no positive effect?
Doc is telling me to apply for SS, whichj I did. And to sut and wait, while using a cane? I’m a self-employed single Dad of 2. If you or anybody have another idea of what to look at oor do, I’ll try it! (Ot at least suggest it)
My regular Dr suggested I fire my neuro and he’d send me to UVA, I told him I’d give the IvIg another “shot” but, so far I’m worse, not better?
Sorry to burden you, my Neuro is short-staffed and thinks I’m a pain in the arse! (too busy to ask questions)
AnonymousMarch 19, 2008 at 11:20 am
UVA, is that University of Virginia? so I guess my next question would be if it is uni.VA, do you live in Virginia? My husband and I recently spent the weekend in Charlottsville and I stopped in at the UVA Hospital to drop some information off from the foundation. Unfortunately it was a Sunday so it was quite quiet, but I did manage to speak to someone in the ICU department. I may have some info for you if you do live in Virginia regarding possible places to go to if you are nearby. Give me a call if you are interested or send me your telephone number on private message. I need to go back and look at your posts as I dont know what you have written about your treatment with your neuro.
AnonymousMarch 20, 2008 at 7:13 pm
I was dx with cidp in nov and have went through five tx of ivig, which so far i have not had any real improvement. i seem to be in a holding pattern and some days i’m worse than others.
I was started at 80 mg of prednisone and this month started alternating 60 mg with 50 mg of Prednisone. Plus, i’m on Cellcept 2000 mg daily and Arava 20mg daily.
MD is thinking of trying plasmaphresis on me. i’m not sure when this will be started.
AnonymousMarch 20, 2008 at 10:27 pm
Asv to “Threads” , “Posts” etc- shame we’re not just talking?
So, Beth? looks like you and I are in tye same boat? Forsome reason my Docv is stuck on IvIg, doesn;t discuss Plasma phoresus? Saus it’s “harsh on the body? A gal I know down this way had it done and it saved her life (but she wasbad off GBS and in the Hosp, already)
Ali, please send me your # or if I’m allowed, here, my e-mail is heronemus@aol. Yes, I’m near Roanoke, but, UVA or Duke or WVU are all fairly close (UVA being my MD’s affiliation.
And anybody wanting to write, commiserate or suggest alternatives, I’m open to it! At 46, I’m not ready for the Rocking Chair!
He IS Risen!
AnonymousMarch 22, 2008 at 1:21 pm
My Neuro would not discuss plasmaphresis until i have went through six months of IVIG, Cellcept and Prednisone. The six months will be up in April.
When i see him on Mon. I’m going to ask to have the IVIG more freq than once a month until April 24th.
I’ve looked up plasmaphresis and it is harder on the body than IVIG. I’m willing to take the risk if it will let me walk or stand without a walker. I’ve also not been very accepting of the w/c.
I, too, am not ready for the rocking chair. Maybe I should be at 64. I exercise every day. They are sit in chair and lay on bed exercises, but they get done. Also, do standing exercises. Can stand alone unaided for 30 seconds now. YEA.
From this forum, I’ve found out that some type of exercise is really important.
AnonymousMarch 22, 2008 at 4:41 pm
For those of you who have seen this old post of mine, sorry 😮 , just wanted to post it for Eric. Eric, below are some notes I took during a discussion at one of the meetings in Philidelphia last year, one of the new neuro’s on the foundations medical advisory board was the speaker (I keep forgetting his mane – he is Greek). These are the steps he said he would follow if treatements didnt work.
……………..Here are some of the notes I took from his answer and question time. ….
# As we know, certain varients of CIDP react better to certain treatments. He said that in his experience, if the patient did not respond after 2 or 3 IVIg therapies then he added sterroids to see if there was a response.
# next step would be (I think the IVIg would have been discontinued when following this step), High dose sterroids everyday, then change it to every other day and add Cellcept or similar (up to 3g), and then lower the sterroids more.
# Then if that didnt work, he would try Plasmapharesis
# consider Retuxan (sp?)
These are from my notes, and I was trying to write them down as quickly as he was speaking. He was responding to a patient who asked him what would his treatments be if IVIg failed and what steps would he follow to find one that did work. He also mentioned a couple of treatments that may work for CIDP, but they have been removed from the market because they are so dangerous, so there is a possibility way down the line that some trials may be considered with some of these drugs, but that is still way down the line if it happens at all.
AnonymousMarch 22, 2008 at 5:37 pm
[FONT=”Comic Sans MS”][SIZE=”2″]Beth,
Plasma Pheresis turned the corner for me.
Hospitalized for insertion of the catheter and first exchange, then outpatient for the next 6 (every other day) which meant driving there and back (90 miles round trip) myself as i live alone.
At first i had a hard time loading my walker, and had to use both hands to turn the key in the ignition from the passenger seat, then hoisting myself over the console to the driver’s seat, but i managed and by the third treatment, was able to graduate from walker to cane, and at the end of the two week course was able to start PT.
That was 5 months ago and i no longer need a cane.
Started Pred (60 mg) at the same time, now down to 30mg + 2000 CellCept, and am back to work.
Catheter is kind of a pain, have to wash hair in kitchen sink and sit in bathtub for the rest, but it sure was worth it, and will probably be having it removed in April, whoopee!:D
Am also down to 2400 Neurontin from 3600.
Reckon i rave on about PP because i used to have to hoist myself into bed using a rope tied to one of the bedposts, and butt bump my way up and down stairs (not something you want to do in public:) ) and once the snow and ice came this winter i was sure happy not to have to try to negotiate with a walker.
Anyway, this is kind of a long winded way of encouraging you to try [B][I]whatever[/I][/B] it takes to get you on the road to recovery.
Seems like everything these days has potential side effects, including eating and breathing 🙂 so weigh it with your Doc and see what’s right for you.
Best wishes to you, and be good to yourself
AnonymousMarch 23, 2008 at 8:16 pm
I see that you mention that you are soon getting your catheter removed. Is that because you expect to be done with plasmapheresis? How long has it been since your last round of treatments? If it has only been a month or two, you might want to wait another few months. If you don’t need any by then, it makes sense to remove the catheter and then install another if you need plasmapheresis again. If you need it every three months or so, you then have to decide which to deal with, a new catheter each time, or the hassle of maintaining the one you have.
Godspeed with your decision and Happy Easter
AnonymousMarch 24, 2008 at 6:39 pm
Thanks all for the encouragement. “Old Bat” with two cats I’m praying I have the reponse you have had. MD said today I will probably need Plasmaphresis for life if I have a positive response to it. Just do not know the frequency that I’ll require.
Moving on up???????????? How long does your plasmaphresis take, told me it would be six to eight hours.
AnonymousMarch 25, 2008 at 1:28 am
For treating CIDP, plasmapheresis is typically administered over the course of three to five sessions, spaced every other day. How long each session lasts depends on your weight, red blood cell count, and sex, with weight being the most important. For a fat man like me, a session lasts about 2.5 hours from beginning to end. I doubt any one session would take longer.
When I was using plasmapheresis alone, I would have five sessions over the course of nine days. I would then go fifteen days until the next round. While really frequent, it did keep me going. Now that I have added prednisone back into the mix, I have three sessions over five days, and then I go between thirty and thirty-seven days before the next round.
AnonymousMarch 25, 2008 at 2:59 am
[FONT=”Comic Sans MS”][SIZE=”2″]Hi Mark,
April will be 6 months since the cath was last used, i really don’t mind it, but if it isn’t being used ( not since the initial 7 treatments) would just as soon be rid of it, i guess.
Am kind of ambivalent about that since it seemed such a miracle cure, but neuro is very pleased with my progress without further PP.
Anyway will be seeing him 7th April and we’ll make the decision then on whether to leave it or not.
How are you doing?
At the time of my treatments i weighed 116 so the sessions lasted about 45 minutes. Had seven (every other day) over the course of two weeks, none since but have had no relapses (Knock on Wood:o ) and continue to do exercises at home, mostly stretches, balancing on the ball and exercycle. I avoid weight bearing on my hips as much as possible and only do enough to keep me somewhat limber, in other words, if it hurts [I]stop [/I]
Hope all goes well for you, keep up the good fight!
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AnonymousJune 7, 2006 at 12:22 pm
Hi I am a new member to the forum. I have had cidp for 4 years and have tried many treatments. I had 37 plasma treatments done and I been on IVIG for the last 3 1/2 years. I currently take neurotin. It has been a long road but for the last 3 years I have been reading other members posts and have received comfort from them.
AnonymousJune 8, 2006 at 10:30 am
Welcome to the forum, glad to see you finally posting! It is nice to share our experiences with CIDP, as it is so rare. I had 17 PP & over 40 IVIG infusions during the first 8 months after my Dx, but it was IV steroids that kept me functioning (just enough to be at home.) It was actually 9 months of cytoxan infusions that finally arrested my CIDP.
What is your present contion? I walk with AFOs & take a cane when I go out alone, also have gotten about 80% of the use of my hands back. I wish I could be even better, but will settle for where I am now, compared to being stuck in a power chair for almost 3 years. We are all so different, but our losses & pain are all the same.
AnonymousJune 9, 2006 at 7:41 am
And welcome to your new family, where we feel what you feel. We are here for all sorts of purposes, even to play fun games, cry and vent our frustrations.
PP’s and IVIG’s don’t always bring about improvements and an increase in strength, another very important purpose is to try to just control the progression of this syndrome. If the progression can be controlled, myelin can re-generate and we can heal.
That’s what happened to me. I am healing and my outlook to walk again is good.
AnonymousJune 11, 2006 at 10:32 pm
Welcome! You have found a tremendous place with many friends and a community for us all. I am very LUCKY, to have found this place. It makes you feel that you are not alone, someone else has, and is making the same journey. Good Luck, I think we have all found a good home. Paul.:)
AnonymousJune 12, 2006 at 3:57 am
I was diagnosed with CIDP on Jan 18, 2006 so I am pretty new to this. But I have found a wealth of support and information in this forum.
I see Dr. Garreth Parry in Minnesota at the U of Minn. Neurological Clinic. Dr. Parry is the best. At least for me.
I have improved immensely due to his protocol of steroid use. I take a high dose of methlyprednisone one day a week.(for about 3 months – then he lowers the dose and you come back in three months and so it goes) The results were amazing even with the first dosage. But I must admit that the treatment is pretty rough on me. It takes me 3 to 4 days to feeling strong and alert. Though I still try to get out of the house. Before I had to stop driving but I can drive now. My endurance is very low and I can stand on my feet for no more than 10 minutes because then my knees start to go out. I fear they may be permanently affected. I am not complaining about the steroid treatment I merely state the truth of how I feel and react. I get really off the wall about 2 days after ingesting the weekly dosage. Yikes. Cranky, too. But though the cure seems to be worse than the illness (Parry’s remark) I am very grateful for the progress I have made. I mean, I am walking with just a cane and I can take a shower all by myself. (I formally needed my oldest son to help me with my hair. I didn’t have the stength in my hands to put any pressure on my hair with the shampoo and he was a professional gem doing that for his mother. I am so proud of him. It is wonderful when your family supports you in ways that you never think they would tolerate. My husband had to dead-weight lift me 3 times and I am obese. Really. 265#. He is a strong man. I love him.
Things are much better for me. I use a cane when I go out in public…mostly for balance and sympathy…Hah.
But, of course, I must use the riding carts at Cub or Wal-Mart. Endurance is a huge problem.
Hope you are getting the support and info you desire. But I just wanted to share a little with you. Things will get better.
Best of my heart to you.
CIDP Jan 2006
AnonymousJune 12, 2006 at 10:38 am
Welcome… There was a lot of mention of Dr. Parry in the old forums before they were lost… I am sure you are in very good hands… Please keep us all updated on your progress and join in on any observations you may make as to this strange, strange disease…
AnonymousJune 15, 2006 at 11:27 am
Thanks for all the replys that I received. I was first diagnosed with GBS in July of 2002. After all my plasma treatments I was relapsing quite often and my doctor changed my diagonsis to CIDP. I then started my IVIG treatments and I seem to relapse every year about this time. I am feeling pretty good right now and am having IVIG treatments every 9 weeks and taking neurotin on a daily basis. I have problems with my balance and have nerve damage in my feet.
AnonymousJune 15, 2006 at 11:54 am
hi cindy! i am just new in this forum…but i am very happy that i recieved replies…
it is great to hear that your in good hands with a good doctor…
how i wish i can also have a good doctor… for GBS in our country was rare…
so i really do not know what to do… for my neurologist tells me that he have nothing to do to me now… all i need is to exercise to get strong… anyways my upper x is strong now, it is 80 to 90% strong… but my lower x is still weak if i will going to rate it it is just a 2 to 8% i guess??? cause, i cannot move my fingers on my feet, and i cant even raise it high…
and like everybody, endurance is also my problem… i can easily get tired doing simple exercises…
i hear that almost all of you are taking medicine… while me are not…
what can you advice me friends??? :confused:
but on the lighter side, we are blessed for we have someone who loves and support us…and we have this forum to find comfort…:)
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