Bny,
I am glad you are feeling better! Would you believe as I write this I am fighting a cold too? Started on Friday – I have been using zinc lozenges and drinking gallons of tea but having a lot of sinus and ear pain setting in- trying to avoid antibiotics . On the plus side, since I have been on the Imuran although I am a bit more prone to colds I no longer have major relapses when I get sick . Dick S I love your quote about the dog and the hydrant – I needed that today!

Add me to the list ! I have mixed connective tissue disease, lupus, bechets vasculitis, and CIDP.

I am so glad you had a good response to your treatment- it is a long day- I can only go to 60 ccs/ hour. Luckily my infusion center is only 20 minutes drive . My reflexes are pretty normal now – the only time I lost them is when I was first hospitalized/ diagnosed with GBS at this point I was essentially paralyzed from chest down could not move legs and could not walk- since then have never gotten that weak again ( have been treated for relapses) and have not lost reflexes again. My neurologist jokes that my reflexes are mocking him. In terms of skin I do get weird rashes from time to time. Don’t forget your skin is your largest immune organ and people with autoimmune disease get all sorts of weird rashes . Add to that the meds which can cause rashes- I get something called solar urticaria which is like hives from the sun . I feel like living with autoimmune disease including CIDP is like a the line from Forest Gump- its like a box of chocolates- you never know what your are going to get! Hope your good days keep coming.

Thank you for sharing- I was diagnosed in 2008 and am in the process of slowly weaning down ivig dose ( currently on every 10 days) next step every 2 weeks. Spent last night in bed with terrible migraine after IVIG yesterday and would love to be free of it! I am also on an immunosupressant ( imuran) – Did they try any immune suppressants in your case? Keeping fingers and toes crossed for you!

Hi there- hope you are feeling better and sorry to hear you are still having ups and downs- It took very aggressive IVIG for that pattern to stop for me ( weekly) – to answer your questions about imuran, I was still getting weekly ivig for the first 10-12 months of treatment and my symptoms did slowly improve but also helped stopped pattern of relapses. I did try cellcept but did not tolerate it due to side effects in my case. I don’t stay out of the sun per se, but live in the great lakes region and we don’t get a lot of sun here- when I am in the sun I wear a hat and sunscreen – more for the plaquenil than the imuran. Don’t apologize for your questions- the more you know the better! Take care

Hello again- to try and answer your questions I started Imuran about 18 months after my initial dx of CIDP due to needing IVIG every 7 days it was very difficult to maintain that schedule and I was still getting relapses – the hope was the imuran would stop the relapses and allow me to extend ivig- after 1.5 years on Imuran I can say that I went a year without major relapse and am now getting IVIG every 10 days- I do have a lot of fluctuation of my symptoms with good days and bad days for sure- at some point I will probably try to go every 2 weeks with ivig- not sure when .
you mention feeling callous on your fingertips that can def be from raynauds – typically scleroderma causes swollen tight fingers that they call sausage fingers. I don’t know if I would call myself a success story as I am not cured but I am living with it and able to lead a fairly normal life – I have not given up hope of cure but for now I am not a candidate for stem cell as I am not weak enough – I am interested in sq ivig to get better control of symptoms – I might pursue trial being done in NYC at weill medical center – not sure if I am a candidate as my other autoimmune stuff may eliminate me –
When I first got diagnosed and started treatment the CIDP dominated my life physically, emotionally – now I still have to deal with it but it no longer dominates me- it is just a part of my life that I have to deal with and I refuse to let it win- you will find balance in time and I hope they find a regimen that works for you with the least impact on your life
I did get the biopsy for celiac ( done through an upper endoscopy of the stomach) which in my case was negative.
I feel for you with young kids- my kids are older now teen and pre teen – I don’t know how I would have handled toddlers! I cannot emphasize how important rest is- Do you have a disability policy through work? Many policies have partial disability that let you keep working and make up for lost income from reduced hours- not sure if doctors can give note you your employer to say you can’t work overnights? I fought it for awhile but eventually went on partial disability- now work about half my previous hours and I wish I had done it sooner- it really helps to be able to self care. Hang in there!

hi there- I am so glad you got in to see a Rheumatologist- I have been on plaquenil for about 6-7 years- I was taking it for possible bechets ( an autoimmune vasculitis) and inflammatory issues which were not fully characterized – then cidp started almost 4 years ago ( as with you considered atypical) saw neuro and rheum at Mayo clinic at this point only on ivig – this past year at my follow up at mayo I was found to have high ANA and RNP antibodies- along with joint pains and new raynauds- so now rheum has dx with mixed conn tissue disorder which is an overlap syndrome with features of many autoimmune diseases such as lupus, Rheum arthritis, sjogrens and scleroderma. I don’t know how this ties in to my cidp except that they are all autoimmune and that my cidp responds to IVIG- so I am currently on IVIG 20 grams every 10 days, Imuran 50 mg per day, plaquenil 200 mg per day and fish oil and a few vitamins. It seems my immune system is just looking for trouble- the plaquenil is very safe and side effects not bad and does not make you more susceptible to infection- helps the joint pain and fatigue a lot! I feel for you as you are going through so many of the things I did- I am still here and living a decent quality of life – pay special attention to getting rest ( not easy with kids I know I have 2) sleep deprivation is the worst and a natural food diet helps too- try gluten free sometimes that helps people feel better as well- I will go back to mayo for follow up this fall for both neuro and rheumatology- let me know if I can answer any more questions!

Hi Lori- Hmm you raise a lot of good questions- I have so far only seen case reports of PML with azothioprine ( Imuran) and usually when used with other immunosupressives – I don’t believe it carries a specific warning by the FDA but theoretically can cause – I also looked up info about the blood test- it was developed for patients with MS who go on an agent called Tysabri which is associated with PML- it is a blood test to look for antibodies to see if you have been exposed to the PML virus ( called the polyoma virus) that can become active when you are immune suppressed- they use it in patients who are considered at high risk of this before starting Tysabri – it was just approved by the FDA and not sure if available yet . the plot thickens yet again! I have a friend who is on Rituximab finishing a protocol of every 3 month infusions and also received cytoxan for a hematologic disease and has done very well works full time no issues except occasional sinus infection. I learn so much from everyone on this forum-