IVIG Questions

    • Anonymous
      December 19, 2009 at 12:39 pm

      My IVIG has been delayed this month by a week. I will get it in 3 days. I am feeling very tingly, especially in my hands. Does this mean I can relapse and get GBS again or is it normal??

    • Anonymous
      December 20, 2009 at 8:15 pm

      Dear Carolyn,

      The 3-5 day delay of your IVIG will not cause a relapse. Actually, you are a lucky woman, because IVIG usually will not stop the “tingling or pins & needles”, known as paresthesia.

      Warmest regards.

      Jethro

IVIG Questions?????

    • Anonymous
      August 11, 2008 at 11:29 am

      Hi! All
      I am due for for my IVIG tomorrow. I get it every 3 wks. Last week I fell 3x’s. The week before I am due for my infusion I seem to get very week and off balance and stumble alot. At night my legs hurt really bad. Does this happen to any one else?
      Also I have heard alot about plasmapheresis (sp), Has anyone had this? Did it maske a difference?
      Thanks
      Cathy:)

    • Anonymous
      August 11, 2008 at 12:37 pm

      Cathy
      Got GBS oct.07, had 15 pp treatments, last one Jan. 08. I did good for a a few months now I am back to stumbling, off balance and sprained my ankle twice. Physical therapist says I need braces now and Dr. thinks I need more pp treatments. I’ve never had ivig but sounds like we have the same problems with either treatment.
      Good luck
      Shirley

    • August 11, 2008 at 1:34 pm

      Hi Cathy,
      Sorry you are feeling so bad. Falling and tripping used to scare Kevie because he would be embarrases at school wondering how he was going to get up. Anyway, just a thought, maybe you could ask the doc to make the treatments closer together. Are you getting loading doses or maint. doses. Some people on the site get loading doses plus pred. or solumed. or cell cept weekly. You just have to tweak your schedule according to your needs. The most important thing to remember is that you cannot let it come to FEELING symptoms. The fact that you are already tripping at the 3rd week indicates that the process has already started before week 2. You have to catch things before they start and they start even before you can feel them. Have you discussed the weakness prior to the 3 week mark w/ your doc? Being that he has you every three weeks currently, it seems he is a pretty conservative guy off the bat most docs do the 4-6 week schedule first. Maybe he would be receptive to closer treatments at loading doses.
      About the pp, we have no experience, only what I have read here. It is more intensive than ivig and cannot be done at home. Maybe you could try a pp and then follow it up immediateley w/ivig. Once the blood is cleansed w/ as many autoantibodies as possible with the pp, you could have a running start to get the ivig to work? Who knows, maybe you could ask, just a thought that popped into my head???!!!! I hope you feel better soon and figure out a paln that works for you.
      Dawn Kevies mom

    • Anonymous
      August 11, 2008 at 4:19 pm

      Dawn,
      Thanks for the info! I am getting maint. doses. I was getting them every 4 wks an now every 3. I have never been on prednisone not for gbs. I do pre-meds of tylenol & Benadrly. Even with the pre-meds I will still get headache/nausea. They also give me zofran prior to infusion and infuse over 6 hrs. When I receive 5 days if ivig I get deathly ill weith meningitis symptoms, high fever, BAD BAD headace and N/V.
      Thanks,
      Cathy:)

    • Anonymous
      August 11, 2008 at 4:21 pm

      Matteyrae,
      Thanks for the info. Tell me more about thed PP.
      Cathy:)

    • August 11, 2008 at 4:41 pm

      Cathy,
      Is your dx gbs? How long have you had this? Typically with gbs, ivig is not continual. If they are continually giving you ivig it is probably cidp. If it is gbs, then yes, you are right, steroids are not appropriate. It is a good sign that the doc recognized the backwards slide and switched you to 3 weeks, maybe he would be open to the every 2 weeks with a pp first. Someone on the site who is experienced w/pp will be on soon.
      About the pre meds, after 23 months of ivig (on and off in the beginning, now monthly)we have just now at about month 21 figured out how to keep it under control. I don’t even know if it is the pre, during, post meds, the fact that his body is used to ivig, or his new level of pain tolerance. Every one is different, but this is what we do.
      In the beginning we had gammaguard s/d, a powder form, that is when he had the aseptic meinigitis reactions the worst, we switched to liquid and continued the premeds around the clock for 4 days. Then we figured out that the zofran did not help w/ the nausea and may have contributed to his headaches as that is a side affect of zofran. So this is what we do now. 1 benadryl, 2 reg. str. tylenol (stronger than 1 extra str) followed 2 hours later by an aleve. We take the tylenol/benadryl every5-6 hours and the aleve every 12 hours. We do it for 24 hours every day during the treatment (4 days) and now 3 days post as he had started to get the reactions two days post treatment. At present he is 3 days post treatment and I just stopped the premeds. This time as the last two, it was only a 6/10 headache, which is tolerable compared to the past fever, chills, headache, body aches, puking. I promise it DOES get better once you figure out what works best for you.
      Dawn Kevies mom

    • Anonymous
      August 11, 2008 at 4:53 pm

      Dawn,
      Thanks. My diag. is gbs. Has not been changed to cidp. That is why I was wanting to know more about pp. My daughter also wants me to go to a ruhmatoidologist for some blood work and work up for some of my other symptoms. I go next Mon. to my GP and she is great at listening to me & doing what I ask of her.
      Thanks again,
      Cathy:)

    • August 11, 2008 at 6:56 pm

      Cathy,
      Kevin was initially dx with gbs, had ivig, instantly better, 5 months later, it was back. More ivig, better, 5 months later, back. now it is cidp and we have gotton ivig monthly since Oct 07. The first dx took about 4-5 weeks till he plateued at his worst. the worst being unable to walk, go up stairs hold a wash rag or pencil to picu for 10 days. Gbs is dx for some in as little as 24 hours but as long as 4 weeks. Kevin fell in that gray area. Ultimately the response to ivig and repeat ncv/emg comparisons was the final diagnostic tool. Today I believe, Ali posted something like”Whats in a name” Linda. Read it, it is VERY informative. Good luck.
      Dawn

    • Anonymous
      August 11, 2008 at 11:36 pm

      [URL/]http://www.gbs-cidp.org/forums/showthread.php?t=3717[/URL].

    • Anonymous
      August 11, 2008 at 11:42 pm

      [URL/]http://www.gbs-cidp.org/forums/showthread.php?t=3717[/URL].

      Hi Cathy

      There has been alot written about pp over the last few months. One good thread is the one that I copied above. Have a read.

      I had pp for 9 weeks; approximately 3x/week. It made all the difference for me I think — it isn’t the easiest thing in the world. I have a purely sensory CIDP, I went from not being able to wear shoes, to wearing at least something on my feet (in the winter, that is helpful!) Some people have a single round (of x weeks), through to people who need to have it on an ongoing basis. I had it 18 months ago and I have not needed it since. My calcium has been a problem ever since I had it though, the process removes the calcium from your blood because the molecule is too big to pass through the filter. I had calcium infusions every day during the 9 weeks, but it has been an issue since the pp. Otherwise, aside from the catheter, I didn’t find it any more difficult an the IVig. I have that for 2 days a month and have had it on an ongoing basis for 5 years. I would saythat I am stable at the moment.

      I hope that you find something that gives you some relief. I would be happy to talk about my experiences more – either through pm or on the thread.

      Take care

      Debs

    • Anonymous
      August 12, 2008 at 2:53 am

      I can’t wait for treatment but will be scared at first. The learning about it before hand though really is helpful knowing about what to expect. Thanks for all the information here. This has been very helpful to me! Hope you get well soon and have a fast speedy recovery.

    • Anonymous
      August 12, 2008 at 5:52 pm

      Debs,
      Thanks for the info. I am going to check out the web site here in a few min. Just wan’t to say thanks and stay in touch. Do you walk okay by yourself or need a cane, walker etc?
      Cathy:)

    • Anonymous
      August 12, 2008 at 5:55 pm

      Linda,
      Thanks for the info. Learn all you can about your options for tx. I think that is very important. Good luck & keep up up to date on your progress.
      Cathy:)

    • Anonymous
      August 12, 2008 at 7:49 pm

      Hi Cathy

      I walk “ok” by myself. I use a cane from time to time (mostly when I want to let other people know that there is an issue), but have never needed a walker. My feet are dead in places, have no reflexes or sensation to pain, and yet also have very bad pins and needles and electrical shocks. It makes for an odd mix.

      When I walk any sort of distance, afterwards I have horrible neuropathic pain. In the morning my feet are stiff and dead, it takes awhile to wake them up (like the rest of me!). I trip and fall easily because my balance is poor, and wearing high heels is history!! (sniff — I love shoes)

      My hands are somewhat the same. I used to have lovely handwriting, but I can’t write for more than a few minutes without severe pain.

      My neuropathy is very painful, so I take quite alot of pain meds (Neurontin, Tramadol, and OxyContin). They give me some relief. I have an appointment at the pain management clinic this afternoon — they are great, and always are looking for ways to try and relieve the symptoms.

      Hope that you find a treatment that helps. I found that the IVIg has helped — it can take awhile to feel any real change, apart from increased energy (which is great!). I don’t get any side effects from it other than a headache and the need for a nap after my first day of infusion.

      I think that the pp “cleansed” my system of bad antibodies. I improved alot after that, but I would say that now my bloodstream is probably back to where it was with all the crap in it. 🙂

      Debs

    • Anonymous
      August 13, 2008 at 7:07 am

      [QUOTE=Cathy C.]Hi! All
      I am due for for my IVIG tomorrow. I get it every 3 wks. Last week I fell 3x’s. The week before I am due for my infusion I seem to get very week and off balance and stumble alot. At night my legs hurt really bad. Does this happen to any one else?
      Also I have heard alot about plasmapheresis (sp), Has anyone had this? Did it maske a difference?
      Thanks
      Cathy:)[/QUOTE]

      Hi Cathy,

      It is also typical for me to go downhill the week before treatment, however, over time the downhill slide has gotten less and less. It may be that you are not getting enough IVIg to last you through to your next treatment. How much are you getting? After playing around with my dosage and timing for the last year or so we’ve found that 35-40g/day * 3 days every two weeks is enough to carry me through but not enough to give me a raging get-out-of-my-face headache. I still do get nauseated, apparently that isn’t an unusual response according to my nurse, but if I keep eating during the treatment I rarely throw up anymore. My usual fare are crackers, goldfish (nabisco kind…) or oatmeal – anything to absorb acid and keep my stomach settled. I also try to drink ice water as that seems to help more than any other liquid.

      It took awhile to notice the improvements with the IVIg but once I did I decided I could put up with the headaches and nausea as a fair trade off for being able to walk without falling again. :rolleyes:

      Julie

    • Anonymous
      August 13, 2008 at 8:56 am

      Julie,
      Thanks for the insight. I also get the headaches & nause post infusion. I am receiving 35g every 3 weeks. Just one day. Anything over one day I get deathly ill & have to be hospitalized for big time meds & tons of fluids. :confused:

      I con’t my benadryl and tylenol for 2 days post infusion and that seems to really help with the headache. Which we all know really sucks!!!!

      Did you see the new letter this month? Great articled on where IVIg comes freom. Check it out.

      Cathy

    • Anonymous
      August 13, 2008 at 9:16 am

      I have alot of motolity problems. It depends on where I am at. If I grocery shopping I use the cart to hold on to but walk slowly. If I am in my back yard I can get so far and have to struggle to make it back in the house. Walking long hospital halls I have to use a wheel chair. Shopping in a mall I need a walker and usually don’t go to places like that. In my house I am okay walking alone because I sit and take rest periods in between. I got that newsletter yesterday in the mailing and found it very interesting. I wonder if they have research books around on CIDP? That would be interesting to read. Hope you get better soon Cathy! Wishing you good luck!

    • Anonymous
      August 13, 2008 at 9:28 am

      I made a “didn’t have enough coffee before posting” typo – I get treatment every 3 weeks, not every two weeks and you are right it’s always on Day 2 and/or after I have 45g in me that I notice side effects. It was better at 30g/day but not lasting long enough. Haven’t seen the newsletter yet, haven’t been to the post office this week but I’ll check out the article on IVIg. I was pleased to go to a family reunion this weekend and hear how many of them donate blood and plasma. 🙂

    • Anonymous
      August 13, 2008 at 12:49 pm

      Linda H.
      Hey Girl,
      Got my IVIg yestereday. Still taking benadryl & tylenol every 4 hrs. So I am douncy:confused:
      It really does seem to help at least with my pain and balance. Although I cannot walk alone. Especially outside, the ground is just so unlevel:eek:!!!
      I love to check out all the flowers and the different stages of blooming but I just can’t even walk around the house. So I check out the ones I can see from the windows.
      Talk to ya soon!
      Cathy:)

    • Anonymous
      August 13, 2008 at 12:55 pm

      Julie,
      I went to a family reunion this weekend also. I faired much better this year. Last yr. I had a medication reaction and a resp. arrest. That makes for an exciting reunion 😀
      Talk to ya soon!
      Cathy:)

    • Anonymous
      August 13, 2008 at 2:14 pm

      Cathy, I am so happy for you that you are getting the treatment now and I will keep you in my prayers and hope that someday soon you will be able t walk again.
      I have been seeing me getting worse everyday and no treatment is getting depressing. I’m dealing with alot of nerve pain. It’s constant. Hopefully soon they will have me diagnosed. It’s the wait that gets frustrating but I’m trying to deal with it the best I can! I wish you my best and hope you have a fast recovery! 😉

    • Anonymous
      August 13, 2008 at 9:48 pm

      Linda,
      Thanks for the enouragement. I hope yor Dr.s get it together SOON!!!! I know how bad you must feel & I’m so sorry for you.
      Keep in touch and feel better.
      Cathy:)

    • Anonymous
      August 14, 2008 at 4:17 am

      Thank-you Cathy! It’s been a rough road here in my house dealing with this. I did finally get my referral into Duke today. So hopefully things will get rolling now! Here I am up at 4 in the morning since 12 last night! My ritual I guess!

    • Anonymous
      August 14, 2008 at 9:28 am

      Linda,
      You are up alot a night. Are you able to rest during the day at all? Girl! you have to rest, that is so impoortant, I so hope they get things figured out soon. Keep you chin up & keep us posted on your progress.
      Cathy:)

    • Anonymous
      August 14, 2008 at 2:58 pm

      Hi Linda,
      I’m also a night time person. I stay up until the wee hours of the morning and then I don’t want to wake up the next day. I don’t sleep good past 7:00am so I know I don’t get a lot of rest but boy do I love those naps in the afternoon when I can get one. Try to sneak one in whenever you can. They really do help. Take care and God Bless.

      Sherry

    • Anonymous
      August 23, 2008 at 1:31 pm

      Hello Everyone,

      Well, I started treatment today,and boy I really don’t feel that well. They started me on 80mg of Prednisone (SP) everyday for 3 weeks and then they are going to start me another medication, I forget the name of it but they use it in transplant pt, My husband has the paper. When they start me on that they will wean me off the prednisone very slowly. I don’t know about anyone else but when they started prednisone did you feel weak, I feel weak but my muscle are not tight but they hurt. I don’t know if this is in my mind or I’m just having a bad day. Just thought I would let everyone know whats going on. Talk to ya soon. I am going to bed.

      Cheryl

    • Anonymous
      August 23, 2008 at 4:02 pm

      Hmm! Normally that high of a dose for someone never taking it will make a person more aggitated but more energetic. I never noticed myself getting weaker on the prednisone unless I was dropping down the dosage to much meaning weaning off the drug. You could be having a side effect, but I normally don’t see people getting worse. Unless! You are misdiagnosed. Prednisone with GBS can make things worse and a person that has Cognitive Disfunction can react worse to Prednisone along with Fybromyalgia. I would call my doctor and let him know what is going on. I think that drug you are talking about is called Celcept. Normally, depending on the disease, prednisone will help. But some people do have problems. Not all but some may! I just have never had any bad side effects from mine. Give me 50mgs of that I am up and going then! Drop my dosage and I poop out! Hate to hear you are feeling so bad Cheryl! Cyber Hugs heading your way!

    • August 23, 2008 at 9:54 pm

      Dear Venav,
      One side affect of prednisone is weakness in the legs. It makes it difficult to figure out if it is your gbs/cidp worsenning or the prednisone. were you able to find out if it is recurring gbs or cidp. As I mentioned, if it is gbs, steroids ARE NOT reccommended. Is there any way you can convince the doc to start fresh w/ ivig asap? Good luck to you,
      Dawn Kevies mom

    • August 23, 2008 at 10:02 pm

      Cheryl,
      Is the other drug cell cept or imuron? If so, usually those are used as a last defense. Standard protocol is usually ivig, or some docs do start w/prednisone. If ivig alone does not work they introduce prednisone. PP is next, cell cept and imuron are last. They have serious side affects. Of course if you have to use them because nothing else has worked, you have to. They are used to supress your immune system. Find out the name of the drug, and google it. You will learn so much that will help you make the decision that is right for you. Good luck to you, my thoughts are with you in this very scary beginning part of the journey. It will get better, I promise.
      Dawn Kevies mom

    • Anonymous
      August 24, 2008 at 8:30 am

      Cherly,
      I do IVIg every 3 weeks, I am on full dose Imuron & I have done well on it. No major side effects except weight gain from some of my other meds. NO Prednisone. But dawn is so right if it is GBS you should not be on prednisone, Please get a clairification from your Doc. We all woory you are getting the BVEST tx. there is. Hang in there. 😉

    • Anonymous
      August 24, 2008 at 9:16 pm

      I AM FEELING MUCH BETTER TODAY, I CAN FEEL THE BOTTOM OF MY FEET AND LITTLE AND THE TOP, AND PART OF MY LEG, I HAD A RECURRING UTI THIS WEEKEND THAT WAS MAKING ME WEAK THE DOC SAID, I FELT GREAT TODAY I WENT TO SEE MY MOM AND SAT WITH HER FOR ABOUT AND HOUR AND THEN MY IN LAWS ( i must be feeling good);) SORRY I HAVEN’T ANSWERED ANYONE BACK I CAN’T FIGURE THIS WEB SITE OUT YET, MY PRIMARY CARE DOC DID CALL ME FRIDAY NIGHT AND SAID IT WAS CIPD, I SEE MY NEURO DOC ON WEDNESDAY. THANK YOU ALL FOR YOUR SUPPORT. TALK TO YA SOON.

      CHERYL

    • Anonymous
      August 25, 2008 at 12:42 am

      Cheryl
      Glad to hear you were feeling well this weekend. Don’t over do it. Just remember to rest and enjoy the progress.

      Take care and congrats.

    • Anonymous
      August 25, 2008 at 8:53 am

      Glad to hear you are feeling better! Am also glad you are getting some feeling back. This sounds like good news! Get well soon with cyber hugs heading you way.

    • Anonymous
      August 25, 2008 at 10:30 am

      Cheryl, Glad things are looking up a bit for you. I hope you are getting the info you need here. Take care of yourslef, don’t over do it and listen to your body. It will tell you when you need to rest. When that happens, listen. Don’t do the old “just a bit more” stuff, it will do you more harm than good. Have a great day and talk to you later.

    • Anonymous
      August 25, 2008 at 10:56 am

      Cheryl,
      I am so glad you are feeling so much better;) I really sucks when your feeling bad.

      If you need anything or have any other questions just let us know. I will help to the best of my ability.

      I am still learning the web site also. We are all in the nsamew boat. 😎

    • Anonymous
      August 31, 2008 at 9:46 am

      Hi All,

      Sorry it has been a while since I’ve been on line, Their has been a change in my dx, The very first neuro doc I was seeing is back in the picture, my PCP sent him my spinal tap result and EMG result and he had a team of docs look at it, they do not believe that it is GBS OR CIPD, they had me stop the prednisone and they are admitting me on Tuesday, at Beth Israel Hospital in Boston, MA. They believe that it is some kind of virus so they want to do three more spinal taps while I’m in the hospital and bloodwork and xrays. I hope that they find what they are looking for so they can treat me. I hope everyone is doing ok. I just wanted to let you guys know what is going on, I will write more when I get back from the hospital.
      Thanks
      Cheryl

    • Anonymous
      August 31, 2008 at 9:55 am

      Cheryl,
      Good to hear from you. I guess this is a good thing (I hope:confused: ) Do they have any idea what virus it is your dealing with? I will be praying for you & thinking of you & please keep us informed.
      I go on Tuesday for my IVIg tx.
      Good Luck & take care, cyber hugs:)

    • Anonymous
      August 31, 2008 at 10:45 am

      Hi Cathy,
      No they don’t, they said they are going to be doing a bunch of test to see what it is, I hope they find out what it is, I’m so tired of being in pain and also being tired, My boys have football games tomorrow and hope that I will be able to go them, If I take my pain meds I might be able to make it but it hard to judge how you are going to feel. Well I hope that you are feeling better.talk soon
      cheryl

    • Anonymous
      August 31, 2008 at 1:11 pm

      Cheryl, thanks for keeping us posted. I have been thinking of you. I hope they can nail this down for you so you can get a firm diagnosis and treatment.

    • Anonymous
      August 31, 2008 at 6:30 pm

      Cheryl,
      How old are your boys? It is hard to keep up with kids when you are tired & not feeling well. I’m lucky my girls are grown & have families of their own. But when my grandkids are here sometimes I get sooooo! tired:p
      But I love it when they are here.
      Good Luck with your admission & keep us posted.:)

    • Anonymous
      August 31, 2008 at 9:25 pm

      Hi Cathy,

      My Oldest (anthony) Will Be 14 Tomorrow And My Youngest (vincent) Just Turned 11 In August, I Have Changed My Mind Out Going To Their Games Tomorrow, I Am To Unsteady And It Will Be Hard For My Husband To Coach And Watch Me. The Boys Are Okay With It, I Promised Them I Will Be At The First Home Game, It Breaks My Heart Not To Go, But In The Long Run It Will Be Better ( I Hope). Talk To Yo Soon, If You Don’t Hear From Me I Will Give A Post When I Get Outof The Hospital.

      Take Care And Good Luck With Treatment.

      Cheryl

    • Anonymous
      September 1, 2008 at 1:20 am

      I had 9 PP treatments when I first got sick and it saved my life, well with God’s help. Cathy, do you have GBS or CIDP ? I think most people who get the maintenance IVIG dose are mostly people with CIDP. I hope you get help before you fall and break some bones. That is not a good thing.
      God bless you,
      Drummer

    • Anonymous
      September 1, 2008 at 8:57 pm

      Drummer,
      I have GBS. It really does seem to help for the n3 weeks. But I know hen it is time for a tx. Which is tomorrow. Thanks for the advice.

    • Anonymous
      September 2, 2008 at 7:33 pm

      Hi Cheryl! Ohh dear! So sorry to hear this and hope they find out what the problem is! I feel for ya! And will keep you in my thoughts and prayers! Good luck at the hospital and keep us posted! Hope you get well soon! 🙂