Your Replies

  • September 2, 2008 at 10:34 am

    Hello everyone,
    I’ve been diagnosed since 1996 and have been on every treatment protocal used for CIDP and some outside the box, the most recent trial was Tysabri, the MS drug. After 3 months I saw only decline in my condition so the neuro decided tho give me a PE one week prior to Tysabri, and IVIG, 20 gr the day after the Tysabri.
    The day after the IVIG (which was used without success when first diagnosed) I noticed a few tingling sensations in my legs and some slight muscle twitching. I had a several day “surge” of energy, but attributed it to the PE and IV Solumedrol. I had another low dose of IVIG again on Thursday(with no PE) and have again experienced some additional tingles and twitching in my leg muscles, along with an energy surge that is still with me.
    Has anyone else experiened this and could it be a sign that the IVIG is working? My neuro says that since it did not work in 97, it can’t work now. Has anyone gone off IVIG to another treatment and returned to IVIG with success? I’m thinking of asking my neuro to consider a higher dose or a more frequent lower dose od IVIG for a couple of weeks to see if this perceived response is real or not. His current plan is to return me to PE with IV Solumedrol once a week.
    Any thoughts are appreciated. Thanks,

    August 6, 2008 at 12:39 pm

    Hi Eric,
    It has been an interesting and wild ride over the years. Some good, some pretty rotten, but it is what it is and I enjoy the good and try not to worry about the bad as it doesn’t help. Being an x scholarship football player, the initial adjustments were extremely difficult, but with time I found life much better for me and everyone around me to be much better if I just play the hand as dealt and look for the good or up turns when they come. I have also learned moderation when the good times show up, and am careful not to try to do to much at one time, because when I do, I pay for it over the next several days.

    I am afraid the new treatment protacol I have been trying may end this month as I was just notified by my neuro that Biogen has reported 2 new PML cases in users of Tysabri. Needless to say, I am very disappointed because I was holding out hope that “this may be the one” for me, despite no signs of change after the first 4 infusions. Guess it wasn’t to be, so I’ll go back to PE and solumedrol. I will try to get my doc to continue the IVIG with the PE for the next two months to see if that combination helps improve my leg strength and balance. Just another bump in the road, so we”ll keep on trying.
    Hope this finds you better and improving. Never give up, because you never know when something good will happen.

    July 31, 2008 at 1:59 pm

    If JH is dead set against plasma exchange(thought I can’t imagine why)
    you could consider contacting Dr. Carol Koski at the University of Maryland medical center. She is on the GBS/CIDP medical advisory board. I saw her for a second opinion a number of years ago and she agreed with my CIDP dx. I found her to be very well informed and interested in my situation even though I was not a regular patient. She came very highly recommed to me from people I knew in the medical community,(my brother is a doctor in PA) so I took the trip from Georgia to see her. Perhaps a call to her office to see if she uses PE as well as IVIG and other medications may be of benefit. It would be hard for me not to get another opinion if my treating physician refused to try a different treatment if the one he is using was not working for me. I am curious, if you have qualified for SSDI, how in the world can a doctor not consider your case “bad enough? It is extremely difficult to get a claim for CIDP approved with SS.
    As for treatment flexibility, I went from IVIG, to PE, to steroids, imuran, avonex, cytoxin, and rituxan along the way. The thing that worked best for me has been PE with IV solumedrol. Over the past few months, I have relapsed, so my doc is trying an entirely different approach now. Last tuesday I had a PE with solumedrol, then 7 days later I had an Infusion of Tysabri(MS drug), then yesterday IVIG, so 4 medications in 7 days. It is his intent to try this series for 3 months to see what happens. If I see any improvement, I will post a thread so others can talk to their doctors about if if they are not making any progress with their current treatments. As we all know, what works for one does not necessarily work for someone else.
    Just a thought. Hang in there.

    July 28, 2008 at 7:40 pm

    Hi Eric,

    My neuro has never mentioned PML with cellcept, and he has quite a few MS and CIDP patients on this drug. I have taken it for a total of about 5 years since my dx in 96. My dosage has been 2000 mg/day. When we discussed the MS drug Tysabri, he told me about the FDA pulling it off the market in 2006(?) due to 3 deaths from PML. The FDA subsequently found that the deaths were due to the use of two Biogen MS drugs together, Tysabri and Avonex. My doc’s practice has over 600 patiens on this(including trial studies) and has told me there have been no reported problems, so I am taking the risk, and I am a very, very conservative person, but with a “half full attitude.”
    Cellcept has been around a long time so any deaths reported from use of this drug should be available. Your doctor should be able to tell you where to find out, or better yet, should be able to tell you. Primary use is in organ transplant patients to help prevent rejection of the new organ.
    As for the PE, my neuro also insisted on the IVIG and steroids as his front line treatment, but after about three months, he agreed it was not working, so we started PE and have continued it off and on since early 97. It has clearly been my life line. Everyone responds differently to the various treatments, so you need a doctor that will work with you to try other protocals until you find the one that works for you. Good luck and keep pluging away at him.

    July 25, 2008 at 11:12 am

    Atlanta got together a GBS/CIDP chapter meeting a few weeks ago, my first in twelve years since dx. It was great to meet new friends and discuss the changes in our lives. Thread is a great idea.

    July 25, 2008 at 10:52 am

    PML is Progressive Multifocal Leukoencephalopathy, a rare infection of the brain. Most often causes severe disability or death. It’s bad stuff because there is no treatment or cure for it. The risk factor increases when the body is on medications that weaken the imune system. This is one of the potential side effects of the drug I am now on for my CIDP, Tysabri.

    July 24, 2008 at 2:57 pm

    Forgot to ask. If the IVIG is not working has your doc suggested plasma exchange? IVIG did not help me initially so they switched to PE with IV Predinsone at the end of the procedure and this has kept me going for 12 years. The PE is also done without the steriods with good results in many cases and there is minimal risk, if any, with PE’s. If your veins are good they can do them without a port. They can even use an angio cath in the wrist for the return line. Something to consider if your doc hasn’t already suggested it. I’ve had nearly 400 PE’s in the past 12 years, so they must be pretty safe!

    July 24, 2008 at 2:45 pm

    Many on this site have been on cellcept without problems. I have taken it for over 4 years without problems. Its a risk reward assessment for many of these medications as most list some pretty heavy side effects. Steriods have lots of bad potentials as does cytoxin and rituxan. I decided to try Tysabri, an MS drug that the FDA took off the market because of PML deaths reported. Its back on the approved list, but as other treatements have lost their effectiveness, I decide, for me, the risk is worth the potential reward. Do your research, weigh the potential gains against the risk, then decide what is best for you. Good luck in your journey.

    July 24, 2008 at 2:27 pm

    Has your neuro suggested a sural nerve biopsy as a diagnostic test option? I know many on the site talk this test down because of bad results and residual pain, etc, but mine went fine and have never had any residual side effects from it other than the “dead” spot where the nerve was removed, but it did give the doc a positive cidp dx. It can be frustrating for sure. Hang in there.

    July 23, 2008 at 2:46 pm


    I too did not respond to IVIG when first diagnosed in 96 and switched to PE.
    Have been on a varity of treatment over the years, IVIG, PE, oral steroids, IV steroids, cytoxin, avenox, imuran, rituxan,cellcept and now trying Tysabri infusions.
    After three months without PE, cellcept and IV solumedrol, I have noticed significant loss of strength, balance and mobility. Declinded so much I had to quit driving amost 3 weeks ago. So I got a PE yesterday followed by 1/2 gram IV soulmedrol. I have had overnight benefit. Balance is better today, able to walk more stable and most of my pain is gone. If this improvement sticks with me I expect to return to driving in a day or two.

    As you will see on this site, many CIDP’ers respond differently to the various treatments, so the key is to find the combination that works for you. Hopefully your doctor is up to date on the various treatment protocals and will work with you to try different things to see what works for you.

    Having tried all of the treatment mentioned above, the one constant for me has been the PE’s. I have had over 400 so far ranging form 5 days in a row to 3 days, to 2 time a week, weekly, every other week, monthly and every other month. I have gone as long as 6 months, but when I did that I had to have a jolt of prednisone, so I would get 1 gram IV daily for three days. I almost alway get a “boost” from those. Of course the PE’s stop when the doc trying one of the other medications mentioned. The side effects I get from the steroids are rapid heart rate for about a day, kinda of “antsy”/can’t sit still feeling and a huge appetite for several days, then all goes back to “normal”

    I have 3 more Tysabri infusions to go, but after the first three, early indications are that it is not helping, so I will most likely go back to PE, cellcept and the 1/2 gram IV solumedrol after each PE.

    Many of us, including me have had some real low points, but have bounced back, so the best advice I off you is DON”T GIVE UP.

    Best of luck to you and hang in there.


    P.S. Consider installing a “comfort height” toilet in one of your bath rooms. They are much easier to get up from than a standard toilet.

    July 20, 2008 at 4:56 pm

    Hi Emma and Kristin
    Appreciate your input and have made some notes on the T-3 and will talk to my doc on the 29th. Sure is interesting how may cases are misdiagnosed and how everyone reacts differently to the various treatments and medications. Until last week, I was not aware that some react differently to different name brands of IVIG. Sure do learn a lot of things here which is great.
    Thanks to all

    July 20, 2008 at 4:46 pm

    Hi Alison,

    Thanks for your encouragement with the tysabri. It is cutting edge therapy and I go for infussion #4 on the 29th. Have seen no respose from the first three, so doc is going to give me a PE on Tuesday and has also indicated he will give me one IVIG infusion with the tysabri on the 29th. This to is a rather unique treatment protocal. He has tried everything I’ve seen posted on this site and have researched on the net, so I am confident he is up to date on what’s going on with this disease, but was taken aback when he said CIDP does not cause pain. I plan to share with him the responses I have had from others in our family and ask him what his basis for that comment is. As to the risk for brain damage, some days I don’t think I would notice a difference!! Its one of those risk reward things, and as my response to other therapies lessens, one tends to reconsider things. I feel great about the decision and am hoping the reward will be there.
    Hope this finds you well.

    July 16, 2008 at 3:37 pm

    You may want to consider Dr Carol Koski at U of M medical center In Baltimore. She is on the GBS/CIDP advisory board. I went to her many years ago for a second opinion to confirm my dx. I liked her and she seemed to be on top of things.
    I see Dr William Stuart at the MS Center of Atlanta. He stays up with all of the new treatment protocals and is not affraid to try different things. An example is, he is now trying me on Tysabri, an MS drug, to see if it will produce similar positive results as are being seen in MS patients.

    Good luck in your search.


    July 16, 2008 at 3:26 pm

    I had shingles about a year before the CIDP came to visit. Back then there were no pills and my episode lasted about 3 weeks. Know how painful they can be. Good luck and congrats on the chair. They (the chair) sure makes like easier!

    July 16, 2008 at 3:19 pm


    Yes my doctor is a neurologist and has about a dozen CIDP patients. He is also the medical director for the MS Center of Atlanta and is over seeing several drug company clinical studies for MS. This is how I got on Tysabri infusions. He wanted to see if CIDP reacted as well for me as many of the MS patients have responded to Tysabri in the clinical trials. The severe pain developed about about two months before I started the Tysabri treatment, so I can’t totally blame it on the new drug, although the pain has gotten a lot worse since I’ve been on it.
    I saw another neurologist several years ago and he was in total ageement with the treatments I was getting at the time, (PE with IV Solumedrol). I went to see a neuro surgeon last week and he said the pain was due to the progression of the CIDP and gave me a rx for VIcodon. Since my treating doctor refered me to him, it will be interesting to see what his response will be to that when I see him on the 29th. Hope your husband make positive movement. Thanks for your input.