Remission with IVIG treatment?

    • Anonymous
      January 20, 2011 at 4:51 pm

      For those who have CIDP & receiving only IVIG treatments (for which I have been getting for 1 year), am I ever going to get off of this treatment? Am I ever going to get remission?
      Or is this IVIG only a temporary cure-all? I am better with the ivig and when my MD tries to increase the number of days inbetween treatments, I go downhill again (weakness in legs and arms) & have to start from square one again. Does this mean I’m never going to get well? IVIG is the only tx my doctor has me on. I don’t really have much neuropathic pain although I have electric shocks to my extremities at least 7-10 times/day.

    • Anonymous
      January 20, 2011 at 5:47 pm

      Good question. My husband has been on IVIG since 2007 and receives it now every three weeks. Goes downhill when they space it out to every four weeks, and recently went downhill when they decreased the dose. I am thinking it maintains, but doesn’t facilitate remission. But hubby has a bad case of CIDP with atrophied right hand and forearm and some foot drop so maybe it depends on the severity of the CIDP? I’ll be interested to read other responses.

    • Anonymous
      January 20, 2011 at 6:37 pm

      In the approximately 1.5 years I had treatment by IVIG only I did not experience significant remission, merely a slowing of decline. I certainly would not classify any conventional treatment as a cure-all.

      One answer to your question, at least in the opinion of this neuromuscular specialist from the University of California San Diego (UCSD) at La Jolla is, “IVIG alone does nothing to promote remission.”

      The Phoenix Neurological Associates website (a part of 1 of 7 Centers of Excellence for GBS-CIDP) has this to say,

      “CIDP Cure Once the process begins in CIDP there does not appear to be any way to cure it. There are however many form of medical therapy to treat the disease. The disease also may have periods of remission and then have periods of relapse but in most patients they will require some form of therapy for life.”

      And that brings us to consideration of The Phase 1 Clinical Trial of Stem Cell Transplant, which may provide remission and/or cure.

      I recently went to IVIG 3 days every three weeks for about 4 months. But, I experienced continued decline. I am now back on 1 time per week.

    • Anonymous
      January 20, 2011 at 8:08 pm

      No two cases of CIDP are exactly alike. No treatment regimen will affect any two individuals exactly the same. That is the nature of this disease. Sometimes IVIG simply doesn’t work. Sometimes it works wonderfully. Sometime it works for awhile and then stops working.

      I have CIDP and receive only IVIG. It has done well for me since I began my therapy last April. I have showed continual improvement. My neurologist’s philosophy is to discontinue IVIG completely once a plateau is reached, and then to wait and see if the improvement is maintained. My neurologist is fairly renowned and he tells me he has no idea what the future hold for me because this disease is so unpredictable. Unfortunately, no one knows if your husband will go into remission or ever be able to discontinue his IVIG therapy. Time will tell.

    • Anonymous
      January 21, 2011 at 1:41 am

      AIDP stands for Acute Inflammatory Demyelinating Neuropathy, which is another name for the standard rapid onset GBS that most people hear about. The anacronym for CIDP is the same, just change the A to C for “chronic” which means it doesn’t go into remission in the majority of cases. Most who quit treatment do relapse, as in any chronic illness.

    • Anonymous
      January 21, 2011 at 12:40 pm

      My daughter is 4 and has cidp. I have read that 70-100% of children go into remission. My daughter goes to a well known neuromuscular specialist and he looked at me at one of her appts. and said “You know that 50% of adults with cidp go into remission.” I about died. That sounds high. Just a thought.

    • Anonymous
      January 21, 2011 at 4:21 pm

      Just to add: My neurologist says he will take me off IVIG in another year. He says by that time, my immune system will probably calm down. Don’t know if I should believe him. My reflexes have pretty much come back; but my nerve conduction study 2 months ago still shows “slowing” in the nerves (even after 1 year of IVIG). Another neuro specialist I go to–told me, my nerve conduction test may never be normal. So I’m thinking, if my reflexes have pretty much come back & I felt pretty strong at the time of my NCS, why does it still show “slowing” in much of the nerves?

    • Anonymous
      January 21, 2011 at 11:47 pm

      I was going to add that back when I was on the old forum from 2002-2006, the CIDP Chilren’s thread was very active. I do remember reading many stories of children who had gone into remission. Also, young adults & teens seem to fare much better once off of treatment. I do know a few adults who have been without treatment for years, but their CIDP left them pretty disabled, like in wheelchairs.

    • Anonymous
      January 22, 2011 at 3:15 am


      [COLOR=black]In the peripheral nerves, there are many, many short pieces of myelin surrounding the axon. When the myelin regrows, it does not do so perfectly. It can be improperly shaped, like an onion, rather than the overlapping cylinders it previously was. There can be more, shorter pieces of myelin. Just because remyelination has occurred, it is not necessarily as good as it was. That might help explain the NCS results.[/COLOR]

      [COLOR=black]It is possible that eventually you will not need treatment. Dr. Gorson presented information at the Symposium in November (see K. C. Gorson, I. N. van Schaik, I. S. Merkies, R. A. Lewis, R. J. Barohn, C. L. Koski, D. R. Cornblath, R. A. Hughes, A. F. Hahn, M. Baumgarten, J. Goldstein, J. Katz, M. Graves, G. Parry, P. A. van Doorn, “Chronic inflammatory demyelinating polyneuropathy disease activity status: recommendations for clinical research standards and use in clinical practice,” [I]J. Peripher. Nerv. Syst[/I]. 2010 Dec; 15(4):326-33. doi: 10.1111/j.1529-8027.2010.00284.x) that suggests that remission and/or cure (using oncological definitions of no disease activity and no continued treatment) in approximately 30% of CIDP cases. This does not mean that there are no deficits, just that the disease is not getting worse and the treatments do not improve the deficits. The number might have been higher if more patients who had CIDP longer had been included in the study.[/COLOR]

      [COLOR=black]I don’t know that IVIg cures CIDP. My guess is that is does not, at least not in the same way that an antibiotic cures pneumonia. For those that go into remission/cure, what I think happens is that the IVIg keeps the disease process in check and that the body eventually recovers its proper equilibrium. As a practical suggestion, you might try to reduce the dose rather than lengthen the time between treatments. Maybe that is the way for you to discover the proper equilibrium.[/COLOR]


    • Anonymous
      January 31, 2011 at 9:48 pm

      I have had CIDP for 5 years and have been treated only with IVIg infusions. I receive 90g every 7th week. I started at 12 weeks and we worked until my body stopped progressing. That is when you are in remission. No you will not be able to stop. The “C” in CIDP stands for Chronic which means life long unless there is a cure.

      I also take 90mg of Cymbalta every morning for nerve pain and have been taking it for the past 2 years and it has helped a lot. I still have pain, but I am able to teach to 26 2nd graders on a daily basis and have for years.

      I credit this to my neuro and his deligence and patience with me. I was diagnosed very quickly…once I finally went to the doctor. Hang in there, it will become part of your life.

      Do some research on the “half-life” of the IVIg. See if a higher dose less often will work for you. Not as intrusive in your life, and the benefits are the same. I have permanent nerve damage in both feet and hands and also Rheumatoid Arthritis. Be proactive and question your treatment if it isn’t working for you. You are the customer, if you don’t like or aren’t comfortable with your physician, go find another!

      Good luck and stay on your feet!

    • Anonymous
      February 1, 2011 at 12:05 am

      I read an interesting article in the Summer 2009 “Communicator” for the GBS/CIDP Foundation pg 3-4, titled “CIDP Disease Activity Status (CDAS): Recommendations For Clinical Research Standards”. I went to find the link to it on this site but it is broken. 🙁

      The article was about coming up with “an easily applied grading system to classify patients with CIDP following treatment.” ….”Some points of discussion were: 1) Can a classification system be developed that allows for a variable disease course and treatment response, with variable duration of followup, and be simple and easy to apply? 2) Does the concept of cure apply to patients with CIDP? 3 )How would a “clinical remission” be defined? 4) How would patients with persistent but stable weakness, sensory loss, imbalance or walking difficulties be classified? 5) How would patients be classified who are receiving periodic treatments, like IVIG or plasma exchange?” All very interesting questions.

      They came up “with a standard definition of cure that is used as an outcome measure in cancer patients [disease-free survival for 5 or more years, off treatment].”

      And now what I found the most interesting part, “based on clinical assessment by the treating physician from the time of diagnosis in 101 patients consensus-defined CIDP cases..” they came up with the following disease activity status:

      1. Cure: >5 years, off Treatment 15 patients (%) Cure
      A. Normal Exam 6
      B. Abnormal Exam, Stable 9
      2. Remission: <5 years, Off Treatment 17% patients Remission
      A. Normal Exam 9
      B. Abnormal Exam, Stable 8
      3. Stable disease: >1 year, On Treatment 48% patients Stable
      A. Normal Exam 15
      B. Abnormal Exam, Stable 33
      4. Improvement: >3 months, On Treatment 5% Improving
      A. Normal Exam 1
      B. Abnormal Exam, Stable 4
      5 Active disease: abnormal exam, 16% Active
      progressive or relapsing course
      A. Treatment Naive 4
      B. Off Treatment 7
      C. On Treatment 5

      It is just a proposed classification system of disease activity status, and with a small number of patients looked at, but I found the results hopeful. There seem to be a number of patients in the cured and remission categories, though the majority were classified as stable. They did note that a almost a third of patients had normal neurological exams at their last followup no matter what their treatment status.
      Also they did note that patients “can be cured, but have many persistent but unchanging neurological findings.” In other words, deficits can remain despite the label “cure”.

      I apologize for being long winded, typos or errors in interpretation I may have created with this post. I would really recommend reading the whole article if you can find it. It made me feel hopeful.

      Now I really need to go rest. 😉

    • Anonymous
      March 6, 2011 at 12:15 pm

      hi, i am new to this site, my daughter was diagnosed with cidp in dec of 06 at the age of 11, was reading ur post today, in dec of 08 she had an allergic reaction to her ivig, and we decided to lay off it for awhile to see how it goes and believe it or not she went into a remission and we thought thank goodness ur better well unfortunatly it didnt last after a whole year without significant symtoms it came back strong and now she has been back on ivig since jan 2010 so to answer ur ? u can go into a remission but it always has a chance of coming back, its a disappointing thought believe me she has learned to live with it and the uncertanty we r now looking at other treatments hopefully we will find a subsitute because her veins r not taking very well anymore i try to joke with her and tell her they r tired too of all these needles we do the best we can…i hope there is some relief for u soon…

    • Anonymous
      March 6, 2011 at 9:18 pm

      Especially since STANDARDS for diagnosis aren’t yet consistent? Now, they are declaring ‘remission’ standards? It’s not computing in any reasonble sense IMHO.
      When I did research at my onset and subsequent diagnosis. I did extensive research as to what was available as treatment/therapy and what the long and short term implications could be. Steroids were out due to other medical issues and Plasmapheresis was, to me a heap more invasive than trying the IVIG, and The IG worked! I am grateful for that, and that I can get it on a regular basis.
      That said? Remission…that is like ‘cancer’ isn’t it? Unlike cancer, which has a slew of tests that confirm or deny the existence of it, CIDP is more of a mystery in that ONE’s OWN Body has reprogrammed itself for unknown reasons to attack your own nerves! Some part of our systems have become essentially mutant. Still? No researcher knows why this happens per se, only how it does attack.
      A cancer you can cut out or kill via chemo. A mutation[of sorts] is a ‘bit’ harder to deal with? So far, the steroids, Plasmapherisis and IVIG are our lifelines…and soon hopefully the ‘self-stem cell transplants’ for the future.
      I’m not condoning any one way over another. I am grateful that I have been successful having IVIG and that it has worked. But…I realized that unless research did a time-speed-warp jump and soon? I’d likely be on IVIG as long as the insurance and my life savings could sustain it.
      Then, and don’t get me into THIS? Are the definitions of ‘remission’ and how they vary!
      Me? As long as I can and do get around on my own steam, with or w/o aids is about as good as it can be! Its a joy to be able to even go to the grocery store on MY own w/o a scooter? And, it’s good for me! Set the bars low at first? Aim higher each time! I truly hope I’ve not scared you? But that is a reality w/any chronic medical condition!
      Keep faith in yourself and how much you can improve!
      Laurel? I’d sit down and talk hard facts with your docs! You can’t penetrate their envelope unless you try!
      Good luck and hope for you truly!

    • Anonymous
      March 7, 2011 at 5:07 pm

      To me remission is when you are off of all medications, you are steady in your condition (no worsening) for a period of time.

      I would say if Emily gets off of IVIG (FINGERS CROSSED…WE ARE SO CLOSE) and she does not get worse within…maybe 6 months…I would consider her in remission.

      In my opinion cancer is just another autoimmune disease. Your body makes bad cells that do not leave your body. They attach themselves & grow. Well…that’s pretty much what CIDP is. Your body is making bad cells and they are attacking the peripheral nervous system. They will continue the attack until they have enter your autonomic nervous system causing your heart & lungs to stop working. This progression could take years or months, depends on the person…same as with cancer.

      As there are many differences between cancer & CIDP, I think there are many similarities as well. Also, some people have reported a CIDP remission with using chemo…the same drugs used to kill cancer.

      I think it’s interesting discussion.