Hi Lori- If it helps,almost all the cases of PML in patients using Rituximab for autoimmune disease were in patients who had prior or concominant immunosupressive therapy- I don’t know if you are on any steroids or other immune suppressing drugs but when you are looking at rate of 1 in 1000 you may be looking at all people treated including those with cancer on multiple chemo agents. I think that if they think it will help and if you are otherwise healthy you may not be in the high risk group for that complication. No one can give you guarantees unfortunately- I myself am on Imuran which comes with its own stuff and I was on cellcept ( briefly) which also carries the PML warning . good luck with your decision

Hi there- I wanted to chime in and let you know that I had issues with my cranial nerves when my CIDP was diagnosed and at relapses- I too had many atypical features which led me to the Mayo clinic for diagnostic confirmation. I did not experience a definite obvious droop but had bad facial numbness , difficulty chewing, swallowing weak cheek muscles and my voice was very thready and difficult to project. I also experienced some blurry/ double vision and had some weakness in my eye muscles. I do get facial fasciculations and have even had tongue fasciculations ( muscle twitches) that was truly one of the weirdest sensations I have ever had! That does not happen now that things are under better control. I think so many of us have had the ALS scare and truly only time and knowing as each year and month that passes and realizing that you will be ok will put that fear at ease.

Thank you for asking I am doing ok – no major relapse in about one year ( a record for me) – I think due to the combo of imuran and IVIG – i am still getting 20 grams every 10 days. I cannot go above 60 ccs per hour myself – I do get that chest pain and shortness of breath if I go higher even just 65-70 is worse for me- My headache is usually gone by the next day with the lower rate. Luckily because I am small I only get 20 grams so usually done in about 3.5-4 hours. I am trying to increase my physical activity to see how far I can go as I have been inspired by Mitch’s recent updates. I have been trying to walk about 1/2 hour every day – I have been having some more cramping but unless I actually get weaker I will try to push through. I know for me I had a lot of atrophy of leg muscles and could not reverse that until I stopped the cycle of relapses so I am very glad you are on a regular schedule now- wishing you continued healing!

e -mitch ,
thank you for the kind words and your inspiring story. Have you ever thought of going to the media with your story? I see weight loss stories all the time on various morning news shows like good morning america but rarely a story like yours! Few people have ever heard of CIDP much less any understanding of what it means – again I thank you for sharing your story and I know you have already inspired many right here on this forum.
Lori- Although our individual stories are unique I see more similarities than differences as I read this forum. I am going to try and get in better shape and I will report my experiences.

Wow- what an inspiring story even without CIDP ! Thank you so much for giving hope and I am wondering if you would feel worse with your workouts ( i.e. more fatigue, cramping, tingling etc) initially and how did you manage this? If so did the initial worsening get better as you got into better shape? I also have been told not to push too hard and because I get a lot of symptoms when I do exercise I have followed this advice but now I am questioning . Thanks for any advice !

Lori, to answer your questions- I am still on ivig but am in process of weaning down slowly- I see a neurologist at mayo clinic who recommended a wean over a year or two so currently I am on every 10 days from every 7 days – it has helped with the relapses – it has been one year since my last relapse whereas before imuran even on weekly ivig , I was still having relapses some requiring hospitalization. In terms of cellcept, I had severe abdominal pain, nausea, felt shaky and “wired” all the time and had terrible insomnia I lasted 3 weeks to see if side effects would go away but I just could not tolerate it- many people do very well on it however so don’t let my experience scare you off. I take imuran in a pill form I take a relatively low dose once daily. I do have to get bloodwork every month while on it to check blood counts and liver function- I have a port so they draw it when I am in for my IVIG treatments. I found that if you go on Lupus or Rheumatoid arthritis or Chrons disease info sites or forums you find lots of info on these meds as they are used routinely for those autoimmune conditions –
I too keep my eye on the stem cell transplant and If I got worse I would certainly consider but the neurologist at the Mayo gave me a great quote that I often think about when considering treatments ” The punishment must fit the crime” So true! Please don’t hesitate with any questions for me if I can help.

Thank you so much for taking the time to give an update and I am so happy that you are doing well on sq ivig! Do you still have your port for back up or have you been able to remove it? Is there and issue with the skin and tissues becoming less absorbent over time? I know kids with primary and acquired immune deficiencies use sq as their main therapy but don’t know the data regarding this- I know this is being looked at with studies for CIDP and I think that since no well done studies yet neurologists are reluctant to recommend yet – thanks again

Hello there- hope you are doing well today! In terms of prednisone I have taken only a few times for relapse until I could get loading doses of ivig but I tolerate it very poorly- very jittery , can’t sleep, stomach pain. Before considering adding another drug to your regimen , you might want to ask for more frequent ivig as it is safer and will not suppress your immune system and put you at risk of colds/ infections. I myself have not noted a large increase in colds/ infections on imuran but when I do get sick it is def worse and usually end up on antibiotic for sinus infection. Prior to immuran , I never required antibiotics. I also lost weight with my initial dx of cidp largely due to a huge loss of muscle mass- when your nerves are not serving your muscles properly you will get atrophy of muscles- as I have stabilized this has improved and my weight is about what it was before I got sick. In terms of hormones, I do notice a change of my symptoms for the worse when I am cycling. I also take fish oil and started turmeric as was recommended by a rheumatologist- it has a known anti inflammatory effect. Gluten free did not help me and I actually had the biopsy of small bowel which was negative for celiac- you have to be careful with gluten free to get nutritions grains – a gluten free diet can run the risk of low fiber and lack of nutrients like b vitamins found in whole grains. Hope this helps!