Hi there! I am new to this group and new to any type of online forum. That being said, I was diagnosed with CIDP 7 months ago and started IVIG treatments right away. We have seen improvement since then but my neurologist is suggesting that I start taking Immuran to see if this will help me more. I cannot take steroids because I have type 2 diabetes. I am nervous about taking the Immuran because of the higher risk of lymphoma. Is anyone else taking this medication that could possibly give me pros and cons?
Welcome to the world of online support, Catt. I hope that you will find this a good place for information and support. Like with so many other things, what you get out of a support forum depends a lot on what you put in. Great that you have started your own conversation.
One almost-invisible feature of this forum is the search -- you can find it up at the top right. Have you tried using it? (I ask because a lot of people never notice it.)
Good luck on your CIDP journey, Catt.
Welcome Catt64. I am sorry I do not have any insight on the Immuran. But, I do wish you the best and hope you have continued success with your IVIG treatment. Which IVIG are you on?
I really hope that you find this online support is helpful and useful. I get on even if I am bored to see what is going on and read up on any other news in our circle of CIDP friends.
I have only been on IVIG since August 24. I will have my 3rd treatment at the end of the week. I am on Gammaked.
I’ve been on IVIG since being diagnosed several
Years ago…my neurologist feels this treatment
Offers the least problems in terms of side effects
& long term issues. The only problem with it is
The astronomical cost. I have remained stable
Since starting this treatment. I am doing better
than many members on this site…I’m keeping
My fingers crossed. Good luck & I hope you
Have the same results
I do not have any insight on Immuran either, but I have heard of great results with Cellcept. Ask your doctor about that and see if he is open to that. It may take 6 months to notice any differences, but your doctor can explain to all to you. I was diagnosed in January 2013 and I am now in remission and no longer have CIDP from having a Stem Cell Transplant in Chicago by Dr. Richard K. Burt. I am 18 months post transplant and just got back from Chicago friday for a follow up visit. My EMG and Nerve Conduction test came back with significant improvements. I am walking again, riding a bike, as a matter of fact, I just completed 36 miles for the Bike MS this past weekend in San Antonio TX. I dont ride for CIDP because the GBS/CIDP foundation does not have bikes rides, but my passion has become that of helping others with any autoimmune disease.
Good Luck and I hope that the Immuran or Cellcept helps you. There's a possibility of those putting you into remission.
Look into Calmare treatment. I have been on IVIG’S and improving. God bless you
I was on Imuran for 25 years, with no side effects at all. Unfortunately, with menopause the Imuran became less effective. Now I have started a short-term course with prednisone, even though I also have type two diabetes. So far with careful management of my diet , I have been able to maintain moderate control of the blood sugar. Admittedly, my CIDP experience has been mild compared to many. Praying for the best for you and for wisdom in your decision-making.
Go ahead why not i am taking it for the past 7 month and its better than not to take it.
Try it now and its better than to use predison because ivig might be less effective with time and you will need some extra support and you will find it in the imuran Instead of relapsing
Hello Catt64,
I was diagnosed with CIDP In September 2013. I started IVIG treatment right away, it was effective for about 9 months, thereafter the effects were minimal. My neurologist suggested Prednisone.
Like yourself as a Type 2 diabetic I was concerned about the impact of Prednisone.
At first my numbers were very high and weight gain was also a problem. Having said that I got my numbers under control and started loosing weight but the impact Prednisone on CIDP was rather minimal.
Imuran was the next course of action. For 2 months all went well but after that my liver function dropped to 32% and bone marrow break down was also becoming an issue. I have been off Imuran for 4 months, my liver function is still low and is becoming an issue.
I don’t know what my Neurologist will recommend next but I do know that if Imuran is the only option available I would rather let the CIDP take its course I will never go on that drug again.
I hope this helps and please keep in mind that each and every case is unique unto itself.
Good Luck and God Bless!
Hello and welcome to the group! Let me say that one of the things that I have learned from this site is that every person and every single case is unique. What works for one person isn’t necessarily going to work for another. With that said I can tell you that I took Imuran for approximately six months. I did not see any noticeable improvement in my CIDP and I thought that the Imuran was irritating my G.I. tract. I had a lot of nausea and bloating from it. Since then I knew neurologist has upped my dose of IV IG and I am doing remarkably well. I received 2 g of IVIG per kilogram of body weight. I realize this is a high dose and I will not be on it forever. In the meantime my doctor is considering putting me on prednisone to help with the IVIG. His ultimate goal is to get me into some kind of remission. The best advice I can give you is find a very confident neuromuscular doctor. His ultimate goal is to get me into some kind of remission. The best advice I can give you is find a very competent neurologist that specializes in neuromuscular diseases like CIDP and go with his or her recommendations, as well as visiting the site frequently and getting ideas and feedback from the members. Good luck to you and the best of health 
I apologize for all the typos in my post. I use a voice recognition software because it’s easier for me to do that then type
I used Imuran for about a year. I didn’t have any side effects but it also did not help me to stay stable. I also tried Cellcept for about 8 months. It did not keep me stable and gave me thigh bone pain. Nothing serious. I just didn’t get any benefit with them so why continue. Hope it works for you. Mary
Thank you all for sharing your thoughts and experience with me. My IVIG is Gamunex and I feel fortunate that I am being seen by a neurologist who specializes with CIDP. They have been very open and informative about their recommendations for treatment. I like that they leave the decision to me but because this is so new to me I am sometimes scared to make the wrong choice. I will keep everyone posted on how things work out!
steroids is wrong,dont do it
The risk is not nearly as high for women as it is for men....... Discuss this with your doctor of course BUT metanalysis suggests that the risk of lymphoma is real, but the individual risk is rather low, and decision analysis suggests a favorable benefit/risk ratio in the long term. A lot of gobbldy-goup to suggest the chance of bad things happening to you from NOT treating with Immuran (or similar) is much higher than Treating with Immuran.
You are dealing with serious stuff here (we all are) but it is rare that you should fear medication more than the disease.
TJ from ModSupport
Hi Catt, my guy was on Immuran for 8 months with no change in CIDP symptoms. In Canada Canadian Blood Services puts much pressure on the Docs to decrease IVIG because of cost, and you must try a program of high dose steroids and Immuran before the Neuros can reorder IVIG. The next step now is to try Celcept for a year and see if that will reduce the need for IVIG. Each reduction of IVIG caused a flare up. Some people have great results with Prednisone and Immuran, I think it’s worth a try. Hopefully it will work for you Catt
It took me nearly two years to get a correct diagnosis. Before that I saw a neurologist that did everything in her power to get me approved for IVIG, but I didn’t qualify with my diagnosis at the time. I tried steroids and apparently I am allergic, which is rare. Also had repeated nerve blocks until my reaction to them and so was transitioned to Botox (back, shoulders, neck, and scalp). Started Methotrexate (immunosuppressant) which helped initially (less fatigue, some return in sensation in my hands, regained some sense of smell, less spasms, less pain). But, not enough and the other symptoms continued to progress.
I was referred to Mayo Clinic in Rochester, MN. After baseline testing, they took me off of all meds (immunosuppressant and seizure meds) and had me return in three months. I was initially diagnosed with small fiber neuropathy, voltage gated potassium channel antibody syndrome, and fibromyalgia. They started me on a 12-week protocol of IVIG and Rituxin. I saw huge improvements immediately. It gave me my life back to some degree until they began to taper the IVIG. Then, I went back to ‘Hell in a hand basket’ so to speak. Returned to Mayo, they did more testing and I was finally diagnosed with CIDP. (Although, my diagnosis label for my discharge reads autoimmune inflammatory demyelinating polyneuropathy, they are the same.)
My new med regimen is IVIG (Carimune) once weekly and CellCept (immunosuppressant) twice a day. My neurologist at Mayo Clinic said the transplant rejection meds (Immuran and CellCept) -immunosuppressants- are being used more now because the side effects (some nausea) are less/better tolerated than some of the others, like the Methotrexate I took in the past.
So far I’m happy with CellCept, but I’m new to it. Each person is different and will have their own, unique, response/relief to their drugs so keep that in mind. Our bodies are different and this disease process will be different for each of us. That being said, the IVIG has been the most helpful in giving me relief and the two blasts of Rituxin I had this summer also turned things around for me. Rituxin is a type of targeted chemo, it’s a monoclonal antibody targeting B-cells. It stays in your system for six months or more. I liked it better than oral immunosuppressants, personally, but I had a skin reaction so I most likely won’t have that treatment again.
There is currently no cure for CIDP. The goal of treatment is to stop the progression before any further damage can occur because some damage cannot be reversed by treatment. We can all hope for a full recovery, but I will take any gains I can get at this point. In regards to risks, that is a personal decision you have to make for yourself. My father has lymphoma and so I have seen what it does to someone. He was also treated with Rituxin and so we laugh over our shared experience. Anyway, not to make light of cancer, but for me it is worth the risk of developing lymphoma if I can get my quality of life back. Again, it’s a personal decision you have to make for yourself.
I also wanted to applaud you for looking to the future and what may result from decisions you make now. Some days I find it so hard to think past getting relief in the moment. It’s good that you are really thinking through your treatment options. I, unfortunately, research extensively in regular life which has carried over to trying to find answers and relief for myself. All of the drugs used to treat CIDP come with significant risks, but so does delaying treatment of any kind. Think about that and understand that there is hope in many forms, you just need to find the right recipe for yourself. I hope my message helps. I’m brand new to the forum as well.
I did try the imuran,but it did not go well, as my cell count dropped. My neuro felt this was due to my previous history of plasmacytoma in 2009. this is only my experience and I hope you can be helped.
Reading these posts it looks like I may have some options. My insurance company approved IVIG right away but I talked with my neurologist that my conscience would not allow me to take IVIG or Plasmapheresis as I am one of Jehovah’s Witnesses. He said that there are synthetic IVIG products and I said I had no issue with them. That was two months ago never heard from him again till I contacted him saying my condition was getting worse by the day.
His response was have I considered changing my religion as he has no other option and that if I change my Mind call him. At least looking thru this discussion there are a few immunosuppressive drugs to try first.
Thanks
Its about a year i am using imuran;twice daily. I also went through prednisone and ivig, but what i know is that imuran will show it’s positive effects on your body after at least 3 months of using it!