Hello everyone, my husband began IVIG treatment in December. He had 4 days of treatment and then another 4 days in January. He has seen no noticeable improvement. In fact, after the last round of infusions, his hands have gotten much worse. He is having difficulty picking up anything. The muscles in his hands have atrophied and his hands are so much weaker. Before the infusions, he had the most problems with the neuropathy in his feet and lower legs, foot drop in his left foot and weakness in that left leg. He had difficulty buttoning shirts and writing, but nothing to the extent of the weakness he has now. Is this typical of IVIG treatments and will his hands improve? Thanks so much for any advice/encouragement! Dora
The first few IVIG treatments take a lot out of most people. I would see if his neurologist would repeat nerve conduction studies to compare to pre-treatment readings, Also, make sure an IgA level has been checked-- if elevated, it may be a contradiction to IVIG treatment.
Good luck and God bless,
Everyone is different but it may also depend on the amount of IVIg that he was given. Personally I had 400ml of 10%w/v for 5 days in a row then have had the same dose once per month since and it has stopped me getting worse.
I found that with the first IVIG. The first 5 or 6 days were not that that pleasant. That NEURO was giving me infusions for 2 days on an 8 hr drip. I changed to another Neuro ( because of an office miscommunication…too long to go into) This Doc put me on 45m for 3 days on 3 and half drip for 6 months. Then we went for another 3 months. (still with first few days of not feeling all that great). Now I am on 60 mg once a month on 5 1/2 drip. Took 2nd of new drip last Monday but had long hrs at work and most stressful week which is a big no-no. I feel that the stress attributed to this being the least successful of all treatments thus far. I am only affected from my hips down so no experience with hand motor ability. You probably need to check back with the doc and also, I have kept a diary of how I feel each day and what part hurts , it has been very helpful in remembering how I felt each day before, during and after eac IVIG infusion. And, yes, water plays a big part of it. I now drink tons of water and I hate water!!
I would tell you that patience is the key. I was having, and still do, infusions twice a month since Jan 2011. I still got worse but stuck to the regimen, did not choose steroids, and am now on the upswing. Everyone is different but I do believe this is one of those syndromes that takes time and patience. Best wishes!
It’s been two years now for me and this last treatment finally gave me some gains. I’ve gone 12 weeks w/o IVIg, but symptoms are returning now and I’m scheduled for 2/6/13. 12 weeks is my RECORD!
I have been getting the IVIG infusions for over 3 years now. My 1st infusions were in Nov 2009 for the 5 days. I did extremely well. In Dec. I did the 2 day. The treatment plan was 2 days every month. In January my legs stopped working. I was in the hospital for 6 days. They gave me all night drips for the 6 days and I was sent home with a walker. My doctor continued the 2 days every other week. By the time I went in for next infusion I would be using my walker. Then my doctor added celcept, and prednisone. She changed my infusion to once every 3 weeks I get the full dose on one day instead of over 2 days. I was on prednisone for 9 months and it gave me my life back. I am doing really well. I do start getting a few symptoms back just before my next infusion. If I get really stressed I may have a slight relapse. The point I am trying to make is sometimes it is trial and error finding the right treatment and the right dose. For me I find diet makes a huge difference. I drink lots of water and avoid grains.
Hi, I have had CIDP for 7 years. I started with numbness in both feet and difficulty walking. They started me out with steroids and plasmapheris every 4 weeks. This went on for several years. I have been weaned off of steroids several years ago and moved onto IVIG starting at four weeks and building up to 6-7 weeks and back to 4 week intervals. About 10 months ago I started developing tremors in both hands. It is very difficult to eat and button clothing. I would like to hear from anybody that has had this issue and anything that can be done or has been done to help this symptom. I have not heard of IVIG contributing to this issue.
Thanks Johnz
I've had CIDP for 3 or 4 years. I'm not really sure, the onset was very gradual. I was started out on IVIg and Prednisone. After the first 3 months of IVIg, I had to be taken off of it because it was causing my IPF numbers to crash. Once off of it, my IPF numbers leveled off.
I started developing tremors LONG after I was off IVIg, so I don't think that's your cause either. My Neuro suggested that the tremors were most likely from the Prednisone, but I'm not so sure. Over the last 9 months, they have been reducing my Prednisone as they thought it was contributing to Muscle Myopathy, and my tremors continued to get worse. So they want me on a non-steroidal immuno-suppresent. They tried IMMURAN first and that nearly did me in. I was in the hospital for 4 days, 2 in ICU then 5 weeks in a nursing home rehab unit. Right now, I've been on CellCept for about 6 weeks and I go for another EMG/NCS test tomorrow, so hopefully I'll have good news.
Henry said:
I've had CIDP for 3 or 4 years. I'm not really sure, the onset was very gradual. I was started out on IVIg and Prednisone. After the first 3 months of IVIg, I had to be taken off of it because it was causing my IPF numbers to crash. Once off of it, my IPF numbers leveled off.
I started developing tremors LONG after I was off IVIg, so I don't think that's your cause either. My Neuro suggested that the tremors were most likely from the Prednisone, but I'm not so sure. Over the last 9 months, they have been reducing my Prednisone as they thought it was contributing to Muscle Myopathy, and my tremors continued to get worse. So they want me on a non-steroidal immuno-suppresent. They tried IMMURAN first and that nearly did me in. I was in the hospital for 4 days, 2 in ICU then 5 weeks in a nursing home rehab unit. Right now, I've been on CellCept for about 6 weeks and I go for another EMG/NCS test tomorrow, so hopefully I'll have good news.