AnonymousMay 10, 2012 at 1:40 pm
I haven’t posted in years, but have been reading the posts again recently. I’ve had GBS–CIDP now, for over 14 years. The IVIG I received while totally paralyzed and ventilated helped a great deal, but after many years of use to improve my weakness/numbness/functioning, I had reactions such as the horribly painful aseptic meningitis headache that lasts for 48 hrs and a severe “flu like” reaction that takes around 4-5 days to get over. I’ve also tried azathioprine, methotrexate, prednisone, plasmapheresis, and have been taking Cellcept for the last 8-9 yrs. A couple years ago, I tried going off of Cellcept (Dr Ok’d) to see if I still needed it. After almost a year, I had gradual issues with not being able to take a deep breath, extreme shortness of breath when walking, and a sudden weakness and numbness in one leg so bad I had to use a walker. Started the Cellcept again, now my symptoms just fluctuate quite a bit.
Anyway, my question is—is there ANYTHING new coming down the pike for treatment of CIDP? I hate to take IVIG again, but may have to. I am a Social Worker and have worked about 10 hours a week as a therapist for the last 4 yrs and now work in a Cancer Care Center (same amt of hours) which I absolutely love. I want to stay being able to work!!!
May 10, 2012 at 3:01 pm
Cytoxan and rituxin are being used by many. Check out Pam H, Blue eyes for cytoxan info. Subcutaneous ivig also is being used by those who have difficulty w/ivig reactions. Check out Julie or Starli for info on sub-q. As well, several on the site have had the stem cell transplant at Northwestern Univ. in Chicago. Check out Linda M or Alice on the archives for info. They also are on facebook. Good luck
AnonymousMay 12, 2012 at 3:06 am
sub Q trial will be held at the Weill Cornell Medical Center using Hizeria IVIG brand. Call them for more info. Great news for those who meet the “regular” CIDP requirements. Unfortunately, while I was a big instigator/agitator to get this trial going I willnot be able to participate because I have “atypical CIDP” and SPS. For those who meet the “regular” CIDP identification markers and who live close to NYC, have your neuro reach out to the Center. I think they are accepting 100 patients for the trail. I have found excellent care there, with a truly supportive and dedicated staff. Good luck to those who get to do this study. Fromthe info I read on this forum and others, sub q is the way to go – you get the medicine without the side effects. I will be really interested in hearing how patients fare with this new delivery system.
AnonymousSeptember 4, 2012 at 6:13 pm
I have had a lot of success with a programme of diet changes, supplements and other non-medical therapies (after the initial treatment with 6 courses of IVIG.)
To give you some examples, I take a supplement powder called ‘UltrainflammX’ which my doctor tells me contains a substance that over time (years) will reverse my immune system out of autoimmune mode; I adhere to many of the diet and supplements recommended for people with MS as outlined here: http://www.overcomingmultiplesclerosis.org/Recovery-Program/Diet/ – not that what we have is MS but there are some similarities and we can benefit form what they have learned; lastly I have recently been reading up about a Chinese herb called Chang Shan which has been found to reduce the abnormal activity of TH17 immune cells in autoimmune conditions – I am considering trying this out.
I really encourage everyone to try diet and supplements to treat the root problem. There is a huge volume of growing evidence for the impact of diet on inflammatory and autoimmune conditions but doctors don’t generally know about it or talk about it and others will disagree with it (because it is not in their frame of training and expertise). Meditation and prayer have also been an essential part of my recovery.
After the first 6 month period and the 4-6 months recovery that followed, I have had just 2 small ‘episodes’ of symptoms of weakness, and that is with a very busy job and life in general.
I hope you find the treatment that works for you.
September 4, 2012 at 10:39 pm
It is typical of promoters of quack remedies to claim that “doctors don’t know about it,” or some such thing. When doctors don’t know about a treatment, it is generally because it has not been shown to have any medical value. That does not mean that there are not new treatments of merit to be found, only that before they can be considered medicine they must be shown to be safe and effective by the customary protocols of scientific research.
If there is indeed a “huge volume of growing evidence” for dietary treatment of autoimmune disease, somebody ought to be able to cite just one research study in this area so we can see in what regard it is held by the medical community.
I am aware of work being done at the Linus Pauling Institute at Oregon State University evaluating Vitamin B12 and alpha lipoic acid as treatments for peripheral neuropathy. I take these supplements myself, but their benefit is entirely speculative. I don’t make any claims because these can be supported only by scientific research, not anecdotes.
September 4, 2012 at 10:47 pm
The big new treatment for CIDP in the works is, of course, the stem cell treatment being developed at Northwestern University, which is in clinical trials. This treatment has been much discussed on this website.
August 23, 2017 at 10:54 am
The Foundation seems to be partial to Immune Globulin. To look at this website you would think that IG was the only treatment available.
August 23, 2017 at 12:58 pm
angelast, these forums contain whatever people decide to post. The Foundation does not dictate what we choose to discuss. IvIg receives a lot of attention here because it is the most common treatment and, usually, the first treatment that is given.
My primary treatment was plasma exchange, although I was first given IvIg.
Feel free to discuss whatever treatment interests you.
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