Relapse! info needed on immunosupressants

    • Anonymous
      June 5, 2006 at 9:06 pm

      Hi Everyone,

      My internet service has been down the past couple of weeks, but just came on about an hour ago. I have missed and needed you guys terribly since then.

      As many of you know, I have had quite a hard time with my CIDP. I have been in recovery for exaclty 2 years returning to walking on my own for 6 months now from complete paralysis and a ventilator. Two weeks ago my fingertips started to go numb, next my feet, and now I am falling all over the place. I keep telling myself that I am tired, and these are the residuals I am stuck with, but this morning I got and was no longer able to stand on my tippy toes, and I feel really weak. I have an appt. w/ my nuero. tommorrow and I don’t want to go and hear that it is coming back even though I know it is.

      I had my mind set on the hope that it would not come back, especially so soon. I am absolutely devistated. For me, I had many trials and errors w/ the IVIG, PP, steroids, etc. The only thing that worked was the combo of Cytoxan and Cyclosporine. I quit the Cyclosporine 5 weeks ago because I started vommitting every day for 4 months, losing over 50 lbs ( I now weigh 105), and I was in remission. Once I quit the Cyclosporine, I quit getting sick.

      I am so scared and upset. The last two months I have felt better then ever , I finally have started to reconnect with the outside world and get somewhat of a life back. This is my 1st relapse since I had my initial bout that started 3 years ago. I am 23 years old and have come to the grueling realization that I wil probably have this for the rest of my life, even though I knew there was the possibility, I wanted to hope for the best.

      I would love to hear from those who are on other immunosuppressants such as Cellcept and Imuran, and if you have had any problems with them.

      Please keep me in your thoughts and prayers,
      Emily (a.k.a. Nala)

    • Anonymous
      June 5, 2006 at 9:39 pm


      So sorry to hear that you are having more problems. I don’t take any of those you mentioned trying, however my brother has been taking Cellcept(he has Lupus)for quite a long time and has had very good luck with it. I take Plaquenil because I also have Lupus and have not had any issues with it. Not sure Plaquenil would do anything for CIDP though. Anyways good luck at your Neuro. appt. and let us know how it goes.

      Take care,

    • Anonymous
      June 5, 2006 at 11:56 pm

      Dear Emily,

      Im so sorry to hear that you are not doing so good. the only thing that i can tell you is that i have been on immurine since march and my nuro told me it would take 3 months for it to start working. well it has been 3 months and i cant tell that i am on it.

      i was dignosed 8-05 at first my nuro told me it was gbs, then after a 2ed opinion he told me it was first we tried pp we did that from 9-05 untill 1-06 on and off. at first i thought it was helping but i kept having relapses.then in the begining of march my nuro sent me to the university in the state we live in ( west virginia ) it is a teaching hospital. i met another nuro there. and she put me in ivig. we have been doing that 2 times a week for 2 months then we will go to 1 a week for another month.

      to tell you the truth i feel like shit. i am so weak i can hardly walk. and the numbness and tingling is there all the time.but the worst is the ache all over my body.when i go out now i have to be in a wheel chair.

      i am 42 and have always been active, i was a manicurist for 20 years and had my own bussiness and now my life is reduced to going to the hospital 2 times a week and i have lost all my indepence.

      sorry to be so depresing, i guess i just need to vent:(

    • Anonymous
      June 6, 2006 at 11:26 pm


      Relapses are hard, and maybe even harder for you since it has been so long without one for you. My heart goes out to you as you work your way through this one.

      One of the hardest realizations come when it hits home that the CIDP may return, and affect you from now on. It took me a long time to deal with all of the things that go through one’s mind: family concerns, children, how you will handle it long term, job worries, insurance concerns. The list can overwhelm you if you let it. BUT…………….

      The most important thing you can do now is whatever it takes to get better. Your neuro will hopefully get on the ball and get you into treatment ASAP. You know what is happening to you better than anyone. Make sure they listen to you. Early intervention makes the best chance of a shorter relapse and quicker recovery.

      You will recover from this relapse as well. Make sure they take care of you, and then you take care of yourself. Deal with NOW. Later can wait.

      Your neuro will probably try to solve the crisis first, and then wotk on long term prevention. I was on Imuran for three years with mixed results. It works for some. Cellcept is another drug in the same class, it works for some as well. There are others as well.

      After recovery, you can think about those other issues. If you add them to your stress level now, your recovery will suffer. Think as positive as you can, and get all the support you can from your family and friends. Get lots of rest, and I wish you the very best !!

      Take care
      Dick S

    • Anonymous
      June 9, 2006 at 10:23 pm

      Hi Emily,

      I think I wrote to you under another title a few days ago…

      I sure hope you are feeling better…
      I’ve been reading this website a lot lately and I’ve been in shock.

      I’m just now starting to go into remission after four years of non-stop plasma pheresis and 2000 mgs of Cellcept a day. I’ve been going to the gym five times a week to gain strength. At my worse I couldn’t even hold my head up in the hospital or open my eyes. Breathing was a chore etc. Now I can take care of my family, walk up stairs, but I still get very sharp pains in my lungs.

      Anyway, I just wanted you to know Cellcept has been a very good autoimmune suppresant for me. I’m down to one or two a day. it’s tough on your stomach though. Plasma pheresis every two weeks also helped me a lot more than i.v.ig.

      I don’t know if we’ll be stuck with this thing for the rest of our lives or not…I sure hope not, but if so, let’s pray they come up with better ways to treat it. I’m sure you’re like me…I want to help make a difference for someone else.

      Take Care.

    • Anonymous
      November 28, 2008 at 8:40 am

      how are things going for you now?
      i was reading an old post of yours and saw that you tried cyclosporine– i take that now, for the past 2 weeks. i would love to know your experiences and whether it helped at all. also, i would like to know more about the cytoxan…

      i really hope you are doing better these days…

      i’m still unable to walk unassisted. i’ve had this thing for about 11 months now and am feeling like i want to get more aggressive with treatment. i’ve even been courting the northwestern clinical trial with stem cell transplantation.

      looking forward to your feedback emily, and wishing you all the best.


    • Anonymous
      November 28, 2008 at 2:41 pm

      Hello Emily,
      I remember you and your story from our old forum. Have you tried to get ahold of your old good strong friend Pam H to talk to? I can’t relate to you but I thought a hug from all of us would help.


    • Anonymous
      November 28, 2008 at 10:00 pm

      Cellcept has worked for me. I have been on it for about 1 1/2 years now, along with plasmapheresis. My doc said the Cellcept takes about 6-8 months to start working well. Took about 10 for me.

      Be aggressive. I have not had any side effects I could attribute to Cellcept. I decided I could deal with any unpleasant side effects much easier than I could deal with the effects of CIDP. Seems like the longer the attack the higher probablility of lasting damage. Do whatever it takes to make it go away and deal with the side effects (if any) that come along.


    • Anonymous
      November 29, 2008 at 4:58 am

      Hi, Emily.

      After six years of IVIg which worked, the past two years it stopped and I’ve been on a downward spiral: gone from a walking stick to a wheelchair. I can’t take oral steroids — they make me very sick — but I can handle high dose IV steroids (3000mg over three days every month), along with azathioprine (Imuran). I’ve only been on the azathioprine for a month, so don’t know how much good it’s going to do — it takes several months to make a difference — but at least it’s not causing any problems.

      The only problem is the withdrawal from the steroids: for a couple of days, while my adrenal gland is coming back to life, I have a lot of pain and difficulty moving, but then I have a couple of weeks in which I see some short-lived improvement (which is why I’m also on azathioprine — we’re trying to extend the improvement).

      The fun of experimentation!


    • Anonymous
      November 29, 2008 at 11:50 am

      I hope that most who read this post realize that it is from June of 2006 & not a current one. I did talk to Emily last summer & I know that she is doing really well at age 25 now, living in a large condo by herself & was going out a lot with friends, driving (even walked away from a bad accident), & was thinking of going back to school to become a medical transcriptionist. I”m not sure if I even have a current phone number for her, & I think she only uses the computer rarely when she has access to one. I believe that the only treatment she is now getting is IVIG once a month & she can even run! That is about all I can remember from the last email I received from her…

    • Anonymous
      November 30, 2008 at 4:28 am

      Hi, Pam.

      Thanks for this. This isn’t the first time I’ve been caught out by ignoring dates!

      I’m glad to see that for Emily it’s out of date: it’s always a joy to read of people who are beating the beast.

      Keep fighting.