How long does IVIG last, on average?
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July 24, 2007 at 12:29 pm
Well it’s been about a year since I’ve posted on here. A lot has happened and my diagnosis has gone full circle back to CIDP/GB – they are still trying to decide which one. I am also thinking hard about this and I was wondering what the average length of time IVIG works for most people. I’ve read anywhere from a few weeks to a year or more. It’s been about 10 months since my last IVIG and I’ve just started getting the shooting nerve pains again.
Also, has anyone run a fever from IVIG? I mean like I’ve had a fever non-stop for 10 months now and we’ve run a ton of infectious disease and rheumatological disease test, cancer etc. but nothing has come up so I was wondering if IVIG could have boosted my temp up.
At any rate I am much better now, I really only have paralysis when I am stressed/fatigued and my muscle strength has improved as well. I still don’t have any reflexes and my stamina is pathetic but that could be due to the fever.
Somehow I knew I’d end up back here eventually so let me just say it’s good to be back amongst people who more or less understand this rediculous disease. And thank you for not saying “but you LOOK so much better!” 😉
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July 24, 2007 at 12:40 pm
Hi Julie,
I received IVIG for 9 years. 1st year every 8 weeks, second year every 6 weeks, 3rd year every four weeks and then next 6 years every 3 weeks. This schedule kept me basically symptom free. I never had a fever associated with either the IVIG or CIDP.
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July 24, 2007 at 12:42 pm
Julie
Hello there, just like you, I had a temperature when I first started the IVIG.
It went away after about two weeks. Whether it was caused by that or not
remains a mystery.I first started out with an infusion once every six months, then every four
months, then twice every month. I did notice a difference in muscle strength
within a couple of days. It has worked beautifully ever since.It really depends on how your condition is. You mentioned that it could be
either CIDP or GB…each have different reactions. In this month’s newsletter
from the foundation, it said that a lot of patients are usually dx with GB
before they realize that it is more chronic as CIDP.Hopefully you’ll find an answer to your question from one of your doctors.
Let us know if you do.Miami Girl
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July 24, 2007 at 2:29 pm
Hi, Julie, and welcome back, although I have to say I wish you hadn’t needed to come back–we like you, but would prefer that you not be going through this!
As you know, there’s a broken record on the CIDP forums that keeps repeating itself: no two of us are alike; no two of us are alike.
I’ve had CIDP for seven years and have managed to go anywhere between five months to a year between IVIg infusions. My neuro wanted to put me on in January, which would have been eight months, but because I was dealing with the diagnosis of another autoimmune disorder I opted to wait. I see my neuro tomorrow, and am well overdue for treatment–my body and I aren’t currently on speaking terms, and I’ve just graduated from walking stick to crutch. I hope to have IVIg next week, which will be over a year since my last infusion, and at the moment I’m paying the price.
At any rate, some people have to have it monthly, some quarterly, some a couple of times a year, some occasionally. That’s one of the peculiarities and frustrations of CIDP–you never know. And just when you think you know, the disorder can change courses.
According to Prof. Richard Hughes of Guy’s Hospital, London, who is one of the leading authorities on GBS/CIDP, if you don’t give IVIg within the first couple of weeks of GBS it won’t make any difference, since GBS runs its course within about four weeks–IVIg stops the one-off attack but doesn’t help in the regeneration of the myelin sheaths. If the patient continues to worsen for more than eight weeks, it’s possible he has CIDP, which normally responds to IVIg but which generally requires ongoing treatment of some form to stop the relapses or slow the progression. Of course, there is also recurrent GBS…
Keep fighting.
Deb
London -
July 24, 2007 at 10:21 pm
julie;
i”m certianly no dr. but as the name implies chronicinflammation
is the culprit. turn off the infammation fever goes away nerves get better
voila normality. the flame within needs to be extinguished. -
July 24, 2007 at 10:51 pm
Hi Julie,
I have had C I D P for 4 1/2 years. The I V I G is the thing that got me out of the wheel chair to my feet and going again. I have been on a monthly dose 3 days each. I am also on prednisone that gives me strength also, but is not good for the body. And Imuran. I have been feeling better and cutting back slowly on the pred. and have just started the I V I G at 2 bottles in 3 weeks. In a 3 month period that will be 2 less bottles. Only time will tell if this will work. I honestly thought I’d have to do 3 bottles every 4 weeks for the rest of my life. What ever it takes to keep me going, I will do.
Your exaustion is part of the illness. Everyone has it. Rest is the only answer. I think this CIDP has made me into a professional time waster!
My mind wants to do so many things, but my body just won’t cooperate. Best wishes sweetie, I hope the I V I G brings you back up quickly. I also hope you get the other autoimmune thing taken care of. I’ll be praying for you.
Your fellow Virginian, Mary Ann -
July 25, 2007 at 2:14 am
Hi Julie,
I believe the half-life for IVIG is 21 days, so at 42 days it is out of our system. Most people are on monthly infusions after initial heavier doses. This November will be 4 years for me with CIDP, I started with a mega dose, then every 2 weeks, now am every 4 weeks and it seems to work well. You are in my thoughts and prayers, we are always here for you.
Jerimy
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July 25, 2007 at 3:02 am
You all are so sweet to welcome me back. I can’t thank you enough for responding, it’s good to feel that there are people who care. Joe you cracked me up with your comment about the inflammation causing the fever. It does seem the most logical answer but I can’t get any of my doctors to agree with my logic, they keep looking for another answer. At any rate the fever is manageable and my body has adjusted to it. I’ve never run fevers in my life so it was a bit of a surprise to suddenly run one all the time but unless it gets over 102 it doesn’t give me the shakes anymore.
Mary Ann I know what you mean about wasting time. My eyes have problems so I can only read for about a half hour before they blur and I get a headache. TV is boring and mind numbing to me so I had to find something else to do with myself other than watch the dogs and fish. Right now the best thing I have to distract me is this online world called Second Life. I went and checked it out because another ill friend of mine told me about it, and it’s free. I’ve met so many interesting people from all over the world I’m amazed and many of them are full time patients with a variety of illnesses. Most of the time I just build houses, caves, etc. on there because I don’t have to see well to do it and better – people actually buy them. Who knew? I don’t think a couple of pennies here and there will have an impact on my potential disability payments but it has done wonders for my self esteem and I actually feel productive when I am wasting time now. Get tired and shakey – go make another house and sell it. It’s a distraction anyway but if any of you all decide to check it out send me an IM in world – my name on there is Sukiri Qinan – and we can chat “face to face.”
Back to business, and other question, it’s been awhile since I delved into the research but isn’t there some kind of test you can do to determine if you have CIDP? Proteins in the spinal fluid? I had an Anti-MAG test that came back negative so I assumed that meant I don’t have CIDP but now here we are full circle again. I have to trust this new Neurologist – Johns Hopkins has that kind of reputation where you just have to believe them – but for once I’d like someone to tell me that my case is NOT complicated and they know exactly what is wrong. ha ha ha.
One thing he said stuck in my mind so I thought I’d share it. He was asking about what led me to being stuffed in the ICU for 9 days and my symptoms etc. He asked me if I was confused and both my husband and I said that I was (really I had no idea what was going on.) well he told me there is something they call ICU psychosis – at which point my husband jumped in and said “I’ll bet it’s caused by lack of sleep” which, of course, is something you are rarely able to do when they do your IVIG infusions at night and wake you up every half hour or so. (really, you would think they’d have some sense there – it wasn’t until I got crabby with my doctor and told him I was crawling home if he didn’t do the IVIG during the day, then I finally got some sleep and got better.) So he threw that symptom out and told me it’s more likely that my mental fog is due to lack of sleep (I wake up sweating a lot) and the Foltx I have to take. He is checking to see if I can take Provigil with my blood condition to help with the fatigue and brain fog – I read up on it and I’m psyched! “increases energy, improves outlook and attitude, lose weight.” what more could you ask for? Except that it is a controlled substance…
Well that’s about all I can read right now though I can’t tell you how handy it is to use Ctrl and the mouse wheel to make web pages bigger, what did we do without technology? Did you know that Adobe Acrobat will read outloud to you? And there are thousands of books you can download for free and listen to if you don’t mind a mechanical voice. 🙂
Thanks again ya’ll, be as happy as you can be.
Julie -
July 25, 2007 at 7:47 am
Julie,
I’ve been taking Provigal 200 mg for over two years now and it’s a Godsend. I think I’d spend most of my time on the sofa or in bed without it. I still take naps but it helps me have some kind of life.
Pattie -
July 25, 2007 at 8:14 am
Julie – seems to me that I remember Doc David having an interest in elevated temperatures with CIDP – I believe that was a long term symptom for him. Sort of think he even wrote a paper on this subject – maybe he’d refresh our memories about his findings. Bonney
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July 25, 2007 at 11:18 am
Julie,
Provigil …… It has been a life saver for me. I have just tried to go off it with horrible results and have got a call into the doc to put me back up the the 200mg dose. As for weight loss ……. :rolleyes: hmmmmm, how about weight gain??? well, it seems that way for me in any case 😮 , but for all the other things, its spot on 🙂 . If you dont mind me asking, could you let me know via pm where in VA you live?
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July 25, 2007 at 11:20 am
[B]Joe[/B]
Welcome to the forums! Often when members join, they post a brief history of their GBS/CIDP. Is yours under control at the moment and what treatments have worked, or not, for you.
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July 28, 2007 at 6:16 pm
My son seems to be able to go 3 months between IVIG treatments. We’ve tried spreading them out but his symptoms return almost exactly 3 months.
Adam has had fever and a lot of pain with the treatments (I explain in more detail in a post in the CIDP/Child forum). The side-effects last anywhere from two days to two weeks.
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July 31, 2007 at 10:44 pm
[QUOTE=ali][B]Joe[/B]
Welcome to the forums! Often when members join, they post a brief history of their GBS/CIDP. Is yours under control at the moment and what treatments have worked, or not, for you.[/QUOTE]
ali
i am a type 2 diabetic . my cidp ismost probabaly diabetic
neuropathy which progressed over a period of serveral years.in june of
2006 i started falling down at work and having trouble gripping things.
these problems led me to seek medical assitance and eventually to a very
fine neurologist.in july of 06 i went thru my first series of IVIG treatments.
the miracle was completed in august of 06 with the second series of IVIG.
because i was wheel chair bound at the beginning of treatment and now in seaming almost total remission.i have taken a very aggresive approach toward the dibetes,lifestyle ,eating habits ,drinking etc more to come.
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