Ivig?

    • Anonymous
      March 19, 2011 at 8:23 pm

      I was diagnosed with a fairly severe case of GBS last May 17th. I’ll never forget that day. Any way 7 months in hospital(s) and 2 in a rehab facility and now back home still in rehab(out patient). I can walk now using AFO’s and a single crutch. Use a w/c for long outings. My only remaining pain is in my hands and feet and that pain is substantial. I’m told I had an IVIG treatment and followed by plasmapheresis. Like many of you I had nearly full paralysis for a time.
      My question(s):

      It seems that some go thru several IVIG treatments. My neurologist has never mentioned additional treatments. Does it make a substantial difference?

      My hand pain/numbness gets pretty severe at times and makes the simplest task nearly impossible. I take 1200mg of Gabapentin 4 times a day. I’m told that’s a substantial dosage. What might be alternatives?

      Thanks
      Wayne

    • March 20, 2011 at 10:53 pm

      I had the ivig treatment which didn’t work, so after the 21 day waiting period, they dragged out the blood washing machine ( plasmapheresis ) , of which I received 5 or 7 treatments. I went into the coma before the first ivig and didn’t come back out of it till the second to last plasma treatment. I never got any more ivig’s since then. I am 5 years out with the only main side efect is tingling, numbness, or lack of feeling nerves in both feet from the ankle to the end of the toes. The pain isn’t all that bad, so I take no medication for it. My main drawback is the loss of sense of balance, due to no feeling in the feet to tell my brain whether I’m leaning forward or back. Since no two people are the same with this as to recovery time, percentage of recovery, amount of pain, effective medicines, etc., all I can say is keep comparing notes on this forum.
      Good luck on your recovery.

    • Anonymous
      March 21, 2011 at 10:25 am

      There is a pretty good discussion about pain on-going in the Main Forum. It is called- Information Sought On Pain (Multi-page thread 1 2 3) by
      istaroaz it’s about 4 down from the top right now.

    • Anonymous
      March 21, 2011 at 10:58 am

      For what I understand, long-term or multiple courses of IVIG is usually reserved for patients with CIDP. Since GBS is acute onset damage instead of ongoing damage, those of us diagnosed with GBS usually only require the initial IVIG treatment or plasmapheresis. You would need to speak to your neurologist about additional IVIG’s or get a second opinion.

      Tonya Correll
      GBS May 2005

    • March 21, 2011 at 12:36 pm

      Other than your pain, has any weakness, tingling, ability to do things decreased? If not, then it is probably gbs and that would be why the doc has never mentioned it. If you do feel you are getting worse, not related to the pain, you should convey this to your doc to further investigate through diagnostic criteria that would compare initial ncv/emg to new ones to see if there is any diagnostic documentation that would support a new demylination indicative of cidp.

    • March 21, 2011 at 12:39 pm

      BTW that is a substantial dose of the neurotnin, maybe if it is not helping you can ask for lyrica to be added.

    • Anonymous
      March 21, 2011 at 9:52 pm

      I am very grateful for all the responses. I went into a very deep coma I’m told about 3 days into all of this. Coma lasted 2 weeks and did not regain consciousness for another 6 weeks. I’m getting better, just impatient I guess. Hand and foot pain gets wearisome. And yes on the weakness although I guess all that came from inactivity while being out. I was very strong and fit as a result of near 20 years of climbing and maintaining communication towers,(cell, radio and TV). Lost 45lbs while out. Heck of a way to diet.

      Wayne

    • March 22, 2011 at 10:42 pm

      In regards to being in the coma after coming down with the GBS, it was a medical induced coma. They put me into the coma so they could insert the trache, and although I couldn’t move much at the time, they did it partly as pain medication. The way it was told to me , they gave me 5 IVIG’s and brought me partially out of the coma, which probably caused the nightmares,so when I showed no progress, they put me back into the coma for the twenty one day wait before starting the plasmapheresis.

    • Anonymous
      March 23, 2011 at 9:21 am

      My coma was not medically induced, my GP and neurologist don’t have a conclusive answer as to why it happened. I went on a vent prior to the coma. But what happened and why is not important any more other than knowing if I can do anything to insure it never happens again. I’m just thankful to still be here, and if I can get the pain to ease up a bit I’d be really thankful!

    • Anonymous
      October 25, 2013 at 6:37 am

      Hi WBowyer,
      I am so glad that I have found you.. I have been searching for the answers in a long time. My father has been diagnosed with GBS – Miller Fisher Variant Plus since August 10, 2013. He was given two courses of IVIG with one week distance between the two courses. On Sept 3, He suddenly had a cardiac arrest and was in a comma (no concience + eyes are closed + no movement) until Sept 28. Then, he started to open his eyes, moved his legs and right arm but I can’t say that he’s consious.
      The Neurologist said that he can become forever in a vegetative state because the comma lasted for 25 days. But when I read your stories and assumed that you typed it yourself, I am thinking differently possitive.
      Can you please share more about your stories when you were in a comma. What did you feel, and how did you recover stage by stage. Did you have an additional batch of IVIG? How’s your heart rate and temperature?
      Please drop me an email at anne_red@hotmail.com if you have time.. I will be very gladly to chat with you..
      Please help me as my Father is ALL I have…

      Thank you very much, Anne Darmawan

    • Anonymous
      November 24, 2013 at 11:49 pm

      Hello Wb and All:

      1200 MG of Gabapentin 4 x a day = 4800 MG total/day. There have been patients here taking as much as 6000 MG/day in the past. But 4800 MG, because of the breakdown factors, should be of no concern as long as you can tolerate the dosage and is prescribed by your doctor.

      Dawn mentioned Lyrica as a possible pain reliver for you. 150 MG of Lyrica may do wonders for pain…it is a great pain killer. You may want to ask your doctor about Lyrica.

      Best regards.

      Jethro

ivig

    • Anonymous
      May 26, 2010 at 2:10 pm

      hello,ive been on ivig for the past five years 30g over five days every six weeks ,lately its not working as well as it use to do,last week i started on imruan.is there anybody out there on same.paddy

    • Anonymous
      May 26, 2010 at 5:42 pm

      Look at the top medium blue bar and click on the ‘search’ feature w/a down arrow? Type into the box that is shown “immuran” And it’ll list all threads [continuous conversations] on the topic immuran.
      Click on each post? And start reading! Likely may will refer to web sites and other resources as well as what to expect, how it feels and the less nice aspects of this treatment over others. No sense in starting from ‘scatch’ when so many have invented/or been thru versions of this ‘wheel’! Read, then ask questions! I suspect you will know where to address your questions tho. Always helps to get the rite folks!
      Hoping and more that it works for YOU! Truly!

    • Anonymous
      May 26, 2010 at 7:16 pm

      [QUOTE=paddy]hello,ive been on ivig for the past five,lately its not working as well as it use to do,last week i started on imruan.is there anybody out there on same.paddy[/QUOTE]
      Hi Paddy, If you go to the main forum and search with the spelling Imuran, you will lots of info. from members with experience. My husband had a bad experience with Imuran a couple of years ago. Once the dose got increased, he got sepsis and wound up very ill in the hospital. There is a test that can detect sensitivity called a TMPT. Hubby didn’t have this test prior to starting Imuran. There are several members who have taken Imuran who have not had problems, but do some reading to alert yourself to possible bad reaction. My husband started with back ache and high temperature which progressively got worse until he needed hospital.
      Laurel

    • Anonymous
      May 26, 2010 at 8:37 pm

      being on ‘IVIG for the past five’ means? Is this five months or five days…. There are a whole different slew of ways of approaching IF IVIG works or not? ASK your doc or nurse what brand of IVIG and how much IVIG and how much each day…. It ALL adds up to make a big difference. Why? Because mostly ‘loading’ doses [the first ones] are smaller but over a longer period of time… TO see if you can tolerate it at first? Then, they’ll do or should do blood tests to see if there are changes in your overall basic inflammatory indicators w/the blood. After that? Things could go up, especially if you can tolerate infusions [some folks simply cannot?] and then, further it becomes a question of HOW much does it take, IF Any, to make a difference? Face it if you read up on IVIG? For some folks it does not DO a thing! But, for many, IF prescribed a good brand, and at a good dose over an adequate time? It can work! The odds vary widely as to how it works? Mainly because we mite not have what we ‘think’ we do? Or what’s given us isn’t the rite product WE/You need!
      I went thru a spell where I was given other than the brand prescribed to me. I thot I was going crazy, as IT’d worked soo well before? Once I found out of the substitutions [which are against the law[subs], for many reasons?] I knew WHY I was feeling less effect. It was done by a respected medical provider? And they’d cheated-using less expensive IG products for several months without notifiying either the prescribing neuro or myself… Worse yet? My insurance was billed for the higher cost product, when what I got wasn’t even NEAR it! I truly WANT to know WHAT is being put into me! IF there are any SUBS? There are LAWS that aren’t always enforced and who suffers the consequences? WE do and the Insurance co’s do! Before I get and deliver a new prescription for IVIG? I make a copy of it that goes to the specialty pharmacy. I’ve proof then of what they SHOULD provide! Start asking questions about ‘substitutions’ for IG products? I bet you will get some eye-opening experiences!

      Don’t give up yet? Please, Talk to your neuro and ASK hard questions! Are there substitutes [HE/She can get access to key info] Is IT enough? Doc can tell, in part by bloodwork-ups.. etc.. Then, most important of all? Once you get the dosage right? RESULTS! And that IS what I hope for you!!! Right Dosages+ right Product+ right timing = results- Plain and simple? Not really but, should be?
      Keep asking questions and pushing things along…for now? ‘Nicely’? Because if you come on hard and agressive? They all are gonna back off and maybe shred key docs! This is where the being ‘dumb/smart’ comes into play. Non-threatening, yet, ‘curious’? That’s what I did and I’m amazed at how well it worked? Had to call the state’s insurance regulation board for ‘blood products’ [After contacting my congressmen fed, and local to get the legislations] and wow! Their investigation turned over that infusion center BIG TIME! Don’t forget, knowing what’s right? Helps not only you, but OTHErs who have NO CLUE! Think on it? No doctor is a ‘god’, least last time I looked? Besides, docs like ‘challenges’! We keep them from getting ‘dull’!
      Hope for the future? Let us know, please!!!!!!!!!!!!!!!

Ivig

    • Anonymous
      June 4, 2009 at 9:10 am

      Just what is IVIG and what does it do for us with CIDP.
      It’s made with human blood correct?
      Does it fight the bad anti bodies in our blood?
      People ask what it is and i’m not to sure what to tell them
      Thanks
      Mudbear

    • Anonymous
      June 4, 2009 at 10:41 am

      IVIG is made from plasma – which is the protein part of blood.

      No one knows for sure how or why IVIG works. The 3 most common theories are:

      1) IVIG essentially tricks the immune system to start attacking it – instead of the body.

      2) IVIG provides anti-bodies that the patients body doesn’t have.

      3) IVIG sends a signal to the immune system that it is over active & it allows the immune system to slow down.

      I personally feel that it’s a combination of all three…but I’m just a mom & not a professional researcher.

      I had to come up with a way to explain how IVIG works to Emily when she was 4 years old. This is what I told her:

      When the IVIG goes into your blood it starts looking for the CIDP antibodies – it sniffs them out. Once the IVIG finds the CIDP it gobbles them up & then you poop & pee them out.

      Yeah…not very creative but it worked for her.

      If you are trying to explain it to adults tell them that IVIG is an immuno-modulator – it alters the state of your immune system.

      Do you get IG Living magazine? It is free & has excellent info about IVIG. Here is a link to sign up:

      [url]https://secure.igliving.com/web_pages/register.aspx[/url]

      Kelly

    • Anonymous
      June 4, 2009 at 3:41 pm

      LOL! Kelly! Well at least you explained it enough to where I can understand! 😀 😀 😀 I think if you would have used the adult term, I probably would still be lost trying to understand it myself! But you did fantastic explaining! Thanks! Hugs
      Linda H

    • Anonymous
      June 4, 2009 at 4:48 pm

      Very well explained Kelly.

    • Anonymous
      June 4, 2009 at 7:02 pm

      [SIZE=”4″]IVIG made my strand more aggressive.[/SIZE]

Ivig

    • Anonymous
      October 10, 2008 at 11:59 am

      I know that when you get IVIG they give you something like 1 gram per pound of your weight. Does anybody just get like half of that every other week or something like that. I have been getting really bad side effects getting the treatment(major headaches-nausia).And also they say IVIG only stays in your system for 42 days I guess this is when after feeling good one day then you wake up the next and your fingers are tingling again and your legs start feeling funny again. I try and hold off as long as I can before treatments I guess this not a good thing right
      Ron

    • Anonymous
      October 10, 2008 at 1:06 pm

      My wife had similar problems until they changed from 8% to 10% dilution and lowered her flow rate to 75 (start at 50 and raise to 75 after 15 minutes). The headaches and bad feelings went away and haven’t returned. They also changed brands a couple times nad this one works. But that’s unique to the patient.

      Thing is don’t give up on it. They should work with you until it’s fine tuned.

    • Anonymous
      October 10, 2008 at 2:06 pm

      Here are some things to think about.

      1) Pre-meds are important. Do you currently take Tylenol or Motrin AND Benadryl? If yes, then you may want to speak with your dr about ordering a small dose of steroids before each infusion. Some people have success with this. Some people also use the pre-meds for 24-48 hours post infusion as well. You should ask your dr how he/she feels about you doing this.

      2) Hydration is key. Make sure 2 days before & 2 days after each infusion you are drinking water often. I cannot express how important it is to stay hydrated.

      3) Flow rate is another concern. Make sure you are starting off slowly & gradually ramping up. You can ask that your flow rate be slowed down some to see if that helps as well.

      4) IVIG brands play a role in side effects as well. You might want to speak with your dr about what other brand of IVIG would benefit you.

      5) Dosing plays a roll as well. You could also speak to your dr about breaking up your 1 day dose into 2 consecutive days. So if you receive 60 grams a month you could get 30 grams on a Monday & then Tuesday get the other 30 grams instead of taking the whole 60 grams in 1 day.

      6) The solution of your IVIG could also cause side effects. Do you get liquid or is it powder that needs to be reconstituted? Some people report having side effects with the powder & then doing better on the liquid.

      7) Your nurse should make sure you don’t get air bubbles in your line. IVIG is very bubbly anyways but checking to make sure you don’t get “champagne bubbles” is important as well. They are the little teeny tiny bubbles that some nurses will ignore. We noticed an increase of side effects with Emily when she gets too many of these bubbles.

      The “normal” maintenance dosing for IVIG is 1 gram per kilogram of weight. A loading dose is normally 2 grams per kilogram of weight.

      IVIG has a full life of about 41-42 days. That means around 21 days it’s at half life – meaning it has lost 50% of it’s efficacy.

      You absolutely should NOT wait until you start to feel CIDP symptoms before getting treatment. Damage starts before you feel anything. If you keep waiting you will continue to lose ground & never start to make gains. Every time your body gets attacked it gets weaker & more damage is done.

      Hope that helps.
      Kelly

    • Anonymous
      October 12, 2008 at 2:03 am

      [COLOR=black]Hello Ron,[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]IVIg is said to have a half-life of 21 days. As Emily said, that means at 21 days, half of the dose remains. However, it does NOT mean that at 42 days, it is completely gone. It means that one quarter of the dose remains. At 63 days, one eight of the dose remains.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]However, that may not mean much in the dose/frequency for you. For example, let’s say you find that 1 g/kg every other week is more effective than 2 g/kg once a month. The total load at one time is not so different, but you may need just that extra little bit.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Do all the things Emily said to do. While I have only gotten IVIg when it seemed plasmapheresis was not working (turns out I needed a more aggressive combination therapy), I did most of those things and suffered only a headache, and that was clearly flow dependent.[/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]Godspeed with this. It may take a while to find the right dose, brand, frequency, rate, and so on, but keep with it. It is worth walking. [/COLOR]
      [COLOR=black] [/COLOR]
      [COLOR=black]MarkEns[/COLOR]
      [FONT=Calibri][SIZE=3] [/SIZE][/FONT]

    • Anonymous
      October 12, 2008 at 7:22 am

      Ron, I take pepcid for the nausea and it seems to work pretty well – I also try to munch on plain crackers (not salted) or eat oatmeal to absorb the extra acid, and of course lots of water. It seems like if I can control the amount of acid in my stomach the nausea stays under control. For the headaches I did end up taking prednisone but I suspect if we slowed my rate down to half the speed I’m getting it my side effects would not be nearly as bad. Good luck, and no, you shouldn’t postpone it for all the reasons Kelly outlined. 😉

    • Anonymous
      October 12, 2008 at 10:03 pm

      Most publications place the half-life of IGg at 21 days. However, further research will reveal that there are four distinct classes of human IGg. The half-lives of IGg1, IGg2, and IGg4 are approximately 21 days. The half-life if IGg3 is approximately 7 days. I’m not a chemist or a physician, so I don’t know the differences between these subgroups. I do know that my neurologist, who specializes in the treatments of CIDP, GBS, and ALS, has told me on numerous occasions that the effective half-life of IGg is from 12 to 14 days.

      Ron, Kelly had a number of good suggestions. The flow rate of the infusions and the amounts/types of pre-medications seem to have considerable success in avoiding/mitigating side-effects such as headaches. Your staying hydrated is another great suggestion. In addition to helping with the potential side-effects, hydration will pop those veins up and will make it easier for the nurse to locate them.

    • Anonymous
      October 13, 2008 at 12:27 pm

      I do take the pre meds like the benadryl and tylenol. I try and keep hydrated . I drink gatorade before during and after . The flow rate is not high I believe we start at around 60 bump it up to I think 90 and keep it there.I’m not sure about the air bubbles. I know I have had many different brands and don’t know which one worked any better than the other. The steroid thing might be something to try. Still if one can do a dose every other week wouldnt that work also?
      Thanks for all your comments
      Ron

    • Anonymous
      October 13, 2008 at 12:44 pm

      Hi Ron,

      I get IVIG 40 grams every week. I take Zantaz 150 as well as Advil and the nausea is not too bad. i usually just don’t feel like eating that day or like Julie, have a non salted cracker or cottage cheese sometimes works. the rate really affects my headache though and i do well on 3.5 hours total infusion time. that mght be fast for some people here but it works for me. if they do two hours, my head is exploding. good luck to you!

    • Anonymous
      October 13, 2008 at 1:33 pm

      [QUOTE=mudbear]I do take the pre meds like the benadryl and tylenol. I try and keep hydrated . I drink gatorade before during and after . The flow rate is not high I believe we start at around 60 bump it up to I think 90 and keep it there.I’m not sure about the air bubbles. I know I have had many different brands and don’t know which one worked any better than the other. The steroid thing might be something to try. Still if one can do a dose every other week wouldnt that work also?
      Thanks for all your comments
      Ron[/QUOTE]

      Ron,
      I drank gatorade with my infusions for a long time and what I found was that it made me retain even more fluids, it’s harder on my kidneys because of the extra salt in addition to the IVIg syrup, and I was still getting dehydrated. I switched over to water about four months ago, or very diluted juice (about 1:10 ratio) and I’ve lost 10 pounds, my headaches are better, and my kidneys don’t seem to hurt as much. I still get a bloated belly during the infusion and for about a week after, along with my kidneys hurting but it’s better than it was when I was drinking gatorade and it doesn’t seem to stick around as long as it did. That’s just my experience but you might try cutting out the extra salt during your infusions and see if it makes any difference in the side effects… it did for me.

      I don’t know about the every other week thing, everybody responds differently and every neurologist is different. Your flow rate is pretty low compared to mine – I get 200mL/hour from start to finish (I can just hear Kelly and Dawn choking) which is about as fast as you can go. I think we’ll slow mine down a little bit since I’m having kidney problems – if that doesn’t work we may look into the every other week thing too.

      Good luck and let us know how it goes.

      Julie

    • Anonymous
      October 13, 2008 at 2:22 pm

      Julie – I am choking over here, LOL. I’m not going to give you the lecture. You already know what I’ll say.

      Ron – The concern for me about getting IVIG every other week is breaking up of the dosage. If you usually get 60 grams per week & then you go to only getting 30 grams a week, you are not getting all of those antibodies inside of you at one time. My concern is by not flooding the system completely with the good IVIG antibodies the bad CIDP antibodies are still left & able to attack.

      I agree with Julie about the Gatorade. It’s great for electrolytes when dehydrated but not so great in preventing the dehydration alone. Switch to water & increase your intake before, during & after the infusion.

      So you are saying you don’t receive the same brand of IVIG for every infusion? It’s switched up on you often? This could be the problem. IVIG is still made from human plasma but each company cleans it differently. Some people will react to different solvents or preservatives. That’s why it’s important to stick with 1 brand – that way you know what you react to. In my opinion, it’s bad medicine to switch brands around.

      Kelly

    • Anonymous
      October 13, 2008 at 3:56 pm

      Julie! You gave me an idea here that I never thought about and might try it out! The oatmeal for absorbing stomach acid. I get GERD alot and that drives me nuts. Going to try the oatmeal and see what happens. Thanks!
      Linda H

    • Anonymous
      October 14, 2008 at 7:58 am

      actually I went a whole year without IVIG. I thought thaat was GREAT, Then I had a treatment in March, then one in August, now I feel I need another one? That is why I was wondering about every other week
      Ron

    • Anonymous
      October 14, 2008 at 8:50 am

      I think you should see how your dr feels about it. He/she will know your history & be able to tell you if it’s a good option.

      Kelly

    • Anonymous
      October 14, 2008 at 3:37 pm

      I had IVIG in Mid-August and am in the middle of one again now. I am going to have to talk to my Doctor about some sort of maintenance program. Getting on a program the prevents the symptoms from coming back so bad that would be the best option.

    • Anonymous
      October 20, 2008 at 12:00 pm

      has anyone had just a iv steroid for maintence. My doc wants me to do a steroid every other week and see how that does. since IVIG is giving me side effects.

Ivig

    • Anonymous
      October 9, 2008 at 9:26 am

      I got more ivig yesterday. Last month i felt it didnt help and this month i feel the same way. My leg has a dull ache this morning. Do you think this means i can stop getting the treatments now?

    • October 9, 2008 at 9:41 am

      Hi Carolyn,
      Today is the first time I read ALL of your info under your signature. How courageous you are and how very positive you are. It humbles me when I think about the things I complain about. Well, back to topic, was the doc contemplating to change the dx to cidp? I was just wondering what made him think ivig now. As I mention, take my comments with a grain of salt, just a mom thinking out loud. Are you continuing to worsen? has your activity level increaased perhaps causing residuals if it is gbs? If the level of activity is the same and you are worsening, or a repeat ncv/emg was done and there is worsening, I can understand the ivig approach. If all things point to cidp now, and the ivig has not helped for the first two times, some possibilities to explore would be were the first two treatments loading doses, if not, try a load. If they were, try a load again and follow it up with another in two weeks, if that fails, maybe in two weeks another load with solumedrol. At this point perhaps try pp followed by ivig. If all else fails some with this situation take ivig in conjunction with cell cept. Is there axonal damage in your legs, if so if it is cidp, ivig would not help that. Check out the post by With Hope regarding repair of damaged nerves under a post about the Ohio local chapter meeting or something like that. Maybe you could find something there worth researching as a possibility in the future. What has made the doc change his mind regarding gbs vs cidp. I only mention this because if it is gbs, you are right, ivig would not help. Honestly, from reading here for the past two years, I would venture to guess you are over working and gbs residuals may be making you feel different. So as mentioned above, ivig would not help that. ps, you should consider writing to the foundation to be on the front page as a success story. Being a mom to two kids is hard enough, not to mention all of the hurdles you have over come in such a short time! Keep up the awesome courage and hard work. I wish I had half of your courage!
      Dawn Kevies mom

    • Anonymous
      October 9, 2008 at 9:54 am

      Aw, thank you so much! My neuro really seems to have no clue, so i am going to see a GBS specialist at Columbia next month. I have been getting IVIG for 5 months now and think its just time to end it. I am pretty sure its not CIDP. I have been improving month to month, I just think the IVIG has done all it could. Neuro wants me to continue it until December.
      Thank you for the advice, I appreciate it!!

    • October 9, 2008 at 10:12 am

      I guess you are kind of in a situation. I did not realize you have been getting the ivig for 5 months straight. Based on your remarkable recovery, wheelchair to cane, it is hard to differentiate if you just repaired that quickly from gbs, or if the ivig stopped any further demylienation and has allowed you to repair. FYI, Kevin was in a transitional phase such as yours twice. We would go from gbs to cidp to gbs and now for sure cidp. The thing of it is, each time we went off the ivig, w/in 5 1/2 months he would relapse again. At this point, all that we gained with ivig was lost when we stopped. We had to start all over with the flooding of antibodies and the repairs that we gained were lost. I guess you could do a couple of things, you could ask for a repeat ncv/emg to see where you are now in relation to the beginning and go off of the ivig and then repeat the test again in a few months to see if there is any diagnostic change. This would be concrete evidence either way. Or you could just go off of the ivig and see if your condition or strength worsens. IT is such a hard decision. Good luck.
      Dawn Kevies mom

    • Anonymous
      October 9, 2008 at 12:27 pm

      hi carolyn. i was misdiagnosed at first and went 7 months untreated. let me clear that up a bit. i was properly diagnosed at jefferson hospital in philadelphia. i was given ivig 5 consecutive days. after the first treatment, my vision came back. i was still mostly paralyzed, but i knew i’d somehow be okay when i could see clearly again. when i was released from jefferson, my neuro. told me i was misdiagnosed and this was all in my head. i went 7 months w/o treatment. still paralyzed, went to get a second opinion. was told i had gbs. he sent me to a neuromuscular specialist who confirmed the gbs. he quickly and aggressively put me on, ivig, cell cept and cytoxan. (chemo.) he said with the nervous system, whatever doesn’t return in 18 months to two years, probably never will. i’m now approaching my 7th anniversary of gbs. i’m now on permanent disability, asleep from the nose down and some body parts are permanently paralyzed.
      all i can suggest is, please keep your positive attitude. i have one and i believe it helps. keep fighting hard. physical and occupational therapy are a MUST. keep doing the treatments. they may not feel as though they are working, but keep up with aggressive treatments until every avenue has been exhausted.
      you are in my prayers. feel free to private message me if you wish. keep fighting my friend.
      with love,
      deb:)

    • Anonymous
      October 9, 2008 at 3:52 pm

      Hi Carolyn! Bless your heart! I think maybe trying what some of the other’s suggested. Maybe the PP instead. 5 months and that is a very long time! Certainly very costly too! I hope something comes up for you that will be treatable and get you better! Sending cyber hugs your way!

Ivig

    • Anonymous
      August 8, 2008 at 9:22 am

      I got a 6 hour treatment yesterday and today is going to be the last day. The nurse just called and said she is sick. The ivig has to be refrigerated and taken out the night before to come to room temperature. I have $10,000 of treatment on my counter now. If she cant find a replacement, can i re-refrigerate it??!

    • Anonymous
      August 8, 2008 at 3:11 pm

      Carolyn, The agnecy should be finding you a replacement to give you the ivig. I take my ivig out of frig 1 hour berfore my nurse gets here. Shoud be all right to put it back in the frig, but call the pharmacy of your agaency for direction.
      Emma

    • Anonymous
      August 8, 2008 at 3:42 pm

      Thank you!! They couldnt find a replacement so they r coming Tuesday. The doctor said 5 days in between was fine.

    • Anonymous
      August 8, 2008 at 3:44 pm

      do you get an answer about the ivig?

    • Anonymous
      August 8, 2008 at 7:10 pm

      the nurse said it would be ok to put it back in the fridge.

Ivig

    • Anonymous
      February 12, 2008 at 6:14 pm

      I had 3 treatments and feel alive again. Anyone else have comments???
      What’s the longest a person can survive on IVIG???? I have MGUS and IGG subclass immune defiency.
      Thank you,
      Geri

    • Anonymous
      February 12, 2008 at 7:29 pm

      I think until your maker says it’s time:)) There are many folks on here who have done this for a longggg time!

    • Anonymous
      February 12, 2008 at 8:30 pm

      Hi Geri,

      I guess your longevity depends more on your illness than on IVIG. Do you have primary immune deficiency? Do you also have CIDP or GBS? I’m afraid I don’t don’t much about PID, but IVIG in itself isn’t going to kill you unless there are the rare complications like clots or renal complications.

      Kat

    • Anonymous
      February 13, 2008 at 1:40 am

      Hi Geri,

      I have MGUS, CIDP and also IgA deficiency among other things. I have been receiving IVIG on and off for 20 years. Now am receiving monthly forever as far as I know. I haven’t had any serious complications ever just minor issues, the key is finding a brand that works and sticking with it if possible. Also pre-med if needed Tylenol and Benadryl works well for me. Lastly the rate of infusion can cause issues too, find a rate that works without issues and make note for future infusions.

      Jerimy

    • Anonymous
      February 14, 2008 at 6:21 pm

      Thank you for responding, I have IGG subclass immune deficiency, and IGG kappa light chain MGUS, the IVIG has really given me some energy and I can’t believe I can finally do some things around the house. I sure hope it last, I go every 28 days. I’m so greatfull to get back to living. I work full time and am looking forward to some happier times.

    • Anonymous
      February 15, 2008 at 5:46 pm

      Since my diagnosis of immune deficiency, mgus, I feel that a cross word hits me harder, and bothers me more, I just can’t let things roll off my sleeve.
      I’ve always been able to take care and stand up for myself and walk away but sometimes I think people know I’m not up to pare, and are taking advantage of it. It’s basically all work (Government) related but I know the real me will be back, it’s hard right now. Retirement and disability don’t sound to bad to me right now but that’s not my personallity. I get knocked down but I get up again because I’m a tough cookie and around this place you have to be. It just isn’t right.

    • Anonymous
      February 16, 2008 at 8:12 pm

      Geri,

      Life with these things can be a rollercoaster, you have a great attitude and as far as I am concerned that’s key. Learn your limits, you may need to find new ways to do certain things. For example, my memory isn’t what it used to be, I have learned of several ways to cope with it. Your still the same person, it just might take new ways of doing the old things. Take care and please contact me if I can help.

      Jerimy

    • Anonymous
      February 19, 2008 at 6:13 pm

      Thank you Jerimy, are you still working???

Ivig

    • Anonymous
      July 23, 2007 at 11:18 am

      Hi everyone I am always a nervous person especially if things happens unexpectedly. Well I found out that my IVIG treatment should have started today. The secretary thought the Doctor had called me and the DR must have thought that the Secretary had called me. Well now I go the next 4 days this week and next Monday. I called the daycenter and they say it may take about 4 hours the first day and maybe less the other days.

      I was hoping to stay at Rotel for the days of my infusion but they don’t have a room for tomorrow or Wednesday but to call around 12pm today and ask again. I don’t know where I could stay if I didn’t feel like driving. The driving is 90 minutes with no traffic or road construction. Last time I saw my DR at the Hospital it took me almost 2 hours to get there because of the road work.

      I will be getting myself ready with a suitcase just in case tomorrow. So if I can get a room or if I feel sick I can have cloths and my medication on hand to stay there till Friday.

      If I feel good I may go shopping after my infusion this week. I have just received last week a Handicap parking spot hang tag for my car.

      Will post more later if I know more before I leave to go to Ottawa tomorrow.
      My appointment tomorrow is for 9am so that means I would have to leave Cornwall around 6:30am to make sure I have plenty of time during rush hour and with all the road constructions. I will not sleep much tonight. I wish I had more notice now I will be stuck on the toilet today because of my nerves.

      Sue

    • Anonymous
      July 23, 2007 at 11:54 am

      Sue,
      I’m so glad you’re finally getting the treatment you need. I pray that the IVIG works for you as well as it did for me. It truly was a miracle in my case!

      I, too, was really nervous about getting it, but by the time I was hospitalized I was so weak I would have tried anything! I hope you get lucky and can either stay at the hospital or at a nearby hotel so that you don’t have to endure the drive more than once. I didn’t have any real reaction to the IVIG, but I felt pretty wiped out after the 3rd treatment when I got home — and I didn’t even have to drive!

      Please let us know how it goes. We’re all rooting for you. 🙂

      Caryn

    • Anonymous
      July 23, 2007 at 12:06 pm

      Hi Caryn I can’t stay at the hospital as where I am getting the infusion is a daycenter that closes at 4pm. It where people get out patient treatments. The same place I had my Spinal Tap.
      Caryn were your treatments longer then 4 hours a day? They said for me they figured 4 hours the first day then less the following days.

      Thanks for your best wishes

      Sue

    • Anonymous
      July 23, 2007 at 12:09 pm

      Sue

      Excellent news on your IVIG. I hope that this will make you feel better.
      Do you have anyone who could stay with you during those days?

      It seems like such a long drive!!! Good luck to you and just relax and get
      some rest.

      Miami Girl 🙂

    • Anonymous
      July 23, 2007 at 12:19 pm

      Thanks Miami Girl. No I don’t have anyone with me but I will have my cell phone and will call my family with an update after my infusion and if I feel to sick I will find a room somehow. Also if the infuse is only 4 hours then I should be done just after 1 pm so if I feel sick I am sure I will be able to stay there till 4 pm when they close.

      Thanks for your best wishes

      Sue

    • Anonymous
      July 23, 2007 at 12:19 pm

      Good news about your IVIG. In my case it took about 6 hours at the start then went faster as I could tolerate it well. I received 80 mg (800 ml) per session 2 days in a row 3 weeks apart. I felt week after the first day but really picked up after the second. Mind you, when I started I was in a wheelchair and even needed a lot of help getting in and out of bed, you seem in a lot better shape, so the effect should be a lot less.

      Good luck

      Paul

    • Anonymous
      July 23, 2007 at 12:46 pm

      Thanks Paul. You are right I have a mild case of CIDP but felt weaker in the last few months and it affect the way I do my job at work to the point they wanted me to apply for a disability pension.

      Also for the last 9 days both my ears are blocked so I have a hard time to hear and I wonder if it is my CIDP doing that. My hearing was affected around the time I got CIDP then it improved. I know I have tendinitis in my hands that can’t seem to go away. Been like that since February. Maybe the IVIG will help me in that area also.

      Thanks again

      Sue

    • Anonymous
      July 23, 2007 at 12:55 pm

      Sue,
      4 hours sounds about right for the first infusion. They start it really really slow and ramp it up very slowly too, to be sure you don’t have a reaction. I think the next ones were more like 2-1/2 to 3 hours.

      I actually felt pretty good after the first two treatments, but the nurse on the third day started it “full speed” since I hadn’t had any reaction beside a very mild headache, and that was the time I felt pretty wiped out. Even if you don’t have any reaction, it shouldn’t be started at full rate — I learned this from my home infusion nurse. They can just ramp it up a bit more quickly. I think nurse #3 wasn’t too familiar with administering IVIG; I’m told that it’s something of an “art.”

      Caryn

    • Anonymous
      July 23, 2007 at 1:06 pm

      Where I am going for my infusion that is all they do is infuse people with different stuff. My uncle went there and he says they are great. If I ever needed it again I will try to get my family DR to order it so I can get it at my local hospital.

      Thanks Caryn for your information

      Sue

    • July 23, 2007 at 8:35 pm

      Hi Sue,

      I am so glad you are finally getting your treatment! I cannot wait to hear from you when you are done. We noticed such a difference in Kevin after his first treatment. Please make sure you watch the flo rates, we started at 12, then 28, then 50 for the max. We had 95 g over three days for 7 3/4 hours each day. Be sure to continue your pre meds after you leave. We learned that the hard way. The last infusion we had, we continued the premeds for 24 hours post. Good luck and catch up on some reading or TV! We will say a prayer that all goes well!

      Dawn Kevies mom 😮

    • Anonymous
      July 23, 2007 at 9:13 pm

      Thanks Dawn. My IVIG is spread out in 5 days. MY DR offered to do it in 2 days but I took her first option of 5 days.

      Will post when I am back at home on my computer.

      Sue

    • Anonymous
      July 25, 2007 at 9:40 am

      Sue,

      Good news that you’ll be getting your IVIG. I think you were wise to get it over 5 days, instead of 2 days. It’s heavy duty stuff and can wipe you out.

      I wish you a good week and easy time with your infusion. 😉

      Cathy

    • Anonymous
      July 27, 2007 at 6:41 pm

      Just got back from Ottawa.
      I got 4 days of IVIG and next Monday my 5th day. The first day they started slowly from 40 to 80 to 120 to160. Wednesday and Thursday was 40 for 15 minutes then 160 today I had 40 to 160 down to 140. I took Tylenol everyday but just Tuesday I also took the benedryl. Tuesday I was tired because of the benedryl and Wednesday without the Benedryl I was fine but Thursday I felt the flu like symptoms and today because I had to drive home I didn’t take the Benedryl but in the last 45 minutes I got them to lower the rate to 140. Monday I will keep it to 140 max also.

      I got the Gamunnex 10% worth $100. a gram but free for me and I am getting 25 grams a day for 5 days a total of 125 grams.

      In the last 2 weeks my hearing has really dropped and my ear DR is away on holidays so Wednesday I went to the ER and they couldn’t find nothing wrong. They got me in to an ENT DR for a hearing test and results and the woman said I have what seem to her hearing lost due to possible autoimmune disease. Since she didn’t know anything about IVIG or CIDP she couldn’t help me but suggested that steroids would help me. I have inflammation and nerve damage. She is sending a letter to all my DR’s to let them know of her findings.
      I really have a hard time hearing in both ears. I will have to get my hearing aid I wear in my left ear adjusted for now. My family DR is on holidays also so I will be seeing another DR on Tuesday that works at the clinic to read the report from the woman ear DR and hopefully the DR will give me steroids temporarily to fix my hearing loss.

      Sue

    • Anonymous
      July 30, 2007 at 9:09 am

      Sue,

      Oh my gosh, I’m so sorry to hear about your hearing loss. Didn’t know autoimmune disease could cause hearing loss and nerve damage. Best of luck to you – hope the steroids help your hearing loss.

      Cathy

    • Anonymous
      July 30, 2007 at 10:51 am

      Sue,

      Here is the information I found on Autoimmune Hearing Loss from [COLOR=Blue]aarda dot org[/COLOR]:

      [FONT=Tahoma][SIZE=5][COLOR=Red]”Autoimmune Inner Ear Disease (AIED)[/COLOR][/SIZE][/FONT] AIED is an unusual form of progressive non-age-related sensorineural hearing loss and sometimes vertigo. It occurs in both ears with cochlear and vestibular symptoms that progress over a period of weeks to months and affect hearing, and often balance function, in both ears.
      The classic presentation is with bilateral fluctuating but progressive sensorineural hearing loss occurring over several months, leading on to severe deafness. Tinnitus (ringing, tinkling, buzzing, or other sounds in the ear) and intra-aural pressure may occur, as well as dizziness or vertigo.
      For more information on Autoimmune Inner Ear Disease (AIED)”

      More info available at these sites:

      [COLOR=Blue]rarediseases.about.com/cs/innereardisease/a/011202.htm
      tchain.com/otoneurology/disorders/autoimmune/aied.html
      american-hearing.org/disorders/autoimmune/autoimmune.html

      [B](Cut and paste into a browser)[/B]
      [/COLOR]
      Many, many more links if you do a google search using this search:

      [B]autoimmune+ear+disease

      [/B]Jerimy

    • Anonymous
      July 30, 2007 at 5:52 pm

      Thanks Cathy and Jerimy. Jerimy I will look at the links when I cool down.

      Just got back from Ottawa. Found out I had some messages on my answering machine. One from my GYN. For August 8th for my special test in the private area. I got the appointment pretty fast I like that idea but I hope it is not because I have very serious problem. Because I reads that people with cancer should try to get rid of any inflammation in there body so as to not spread the problem. Well I got lots of inflammation in my body hands and what not.

      I just finished my last IVIG treatment hopefully I won’t need to go again since I got sick in the fall of 2004 it’s the first time I got treated for it.

      Now just hope the DR I see tomorrow will give me steroids.

      What a way to spend my holidays running around to medical appointments.

      Thanks everyone.

      Sue

    • Anonymous
      July 30, 2007 at 6:29 pm

      Jerimy started to read some of the links you gave me great links. The first one mentioned cancer I don’t want to think about but it also mentioned the treatments. The second one mentioned Ankylosing Spondilitis which I wondered if I has psoriatic arthritis because I tested positive for HLA-B27 and other symptoms. But it could be also otosclerosis because I had 2 ear surgeries in the late 80’s (stapledectomies).

      Thanks

      Sue

    • Anonymous
      July 31, 2007 at 6:20 pm

      Sue

      The time usually depends on how many grams are to be infused and whether or or not it is a 5% concentration such as Carrimune or a 10% concentration such as Gamunex. Also the patient’s body weight comes into play. A 200lb person can be infused more quickly than someonee who weighs 125lb. Good luck.

      Ron

    • Anonymous
      July 31, 2007 at 6:32 pm

      Hi Ron I got the Gamunnex 10% and I had it at 160 most days but lowered it on Friday near the half way mark to 140 and yesterday I had it at 140. I had 25 grams a day for 5 days. Took around just over 2 hours to do the infusion.
      Done my 5 days of IVIG and hopefully won’t need it again.
      My first time getting IVIG since I got sick in 2004.

      Sue