When the treatment stops…

    • November 4, 2010 at 12:09 am

      Hi everyone,

      I had GBS in 2006, then CIDP. I’ve been treating it with IVIG and prednisone (IV) for 12 months, stopped two months ago. Today I cannot walk!!
      Arms and legs are those of a multiple sclerosis patient. In the period of 2 weeks it started to get worse and worse, I can’t even stand up if I sit on the floor.

      I would like to know if anyone has gone through something similar.

      thanks for any help.


    • Anonymous
      November 4, 2010 at 9:03 am

      I have experienced set backs, but not to the degree you describe. I hope you can recover your strength, and get your condition evaluated.. Take care, Deanop

    • Anonymous
      November 4, 2010 at 9:59 am

      I start getting worse after about 3-4 weeks without treatment. Not as dramatically as you are describing though, more a slow descent.

    • November 4, 2010 at 11:12 am

      Why did your treatments stop? Your present clinical presentation will be proof enough for the doc to reume treatment. More than likely, a loading dose or two will be necessary until you stabalize. Unfortunately, treatments might be a lifetime necessity. Other options include more aggressive measures that can arrest the cidp, but they too come with their own set of complications further down the road. Sometimes it is a matter of the lesser of two evils. Many have seen good results with cytoxan, others have done the stem cell harvesting at Northwestern and regained their lives. These are difficult decisions that take great thought and research. Good luck to you. Others who have experienced the other treatments besides ivig/steroids will be able to better answer any questions you might have about the protocol. Currently, my 13 y/o is doing maint. doses of ivig, we seem to be holding….but is that enough? For now I say yes, but the other treatments are always in the back of my mind!!

    • November 4, 2010 at 12:11 pm

      Thanks to all for your kind replies.

      We stopped to see what good it did. With CIDP there is more than one treatment one could take and apparently we know now that without IVIG/pred things can get much worse. During the treatment I was able to walk fine, climb stairs and play ball with my kids.

      We are always hoping that a different treatment or a new drug will give us our lives back.

      Many thanks and take care,


    • Anonymous
      November 4, 2010 at 12:21 pm

      You said you were not from this country (I am assuming you mean the US??).

      Where are you from? I am sure treatment varies in different parts of the world and depending on how close you are to a “Center of Excellence”.

      Many neuros in the states though, believe in just stopping treatment rather than weaning to get a more clear picture of where a patient is at. However, I haven’t hear of stopping and letting one deteriorate as much as you describe.

      I remember years ago when we went from every 4 weeks to 6 weeks as a trial with my IVIG…I did terrible within a short time. We immediately went back to every 4 weeks and it took me a bit to catch up. I would think they would not have let you deteriorate so far before resuming treatment again.

      Have you notified the Dr? Have you resumed your “old” treatment?
      I hope you are doing better. Please let us know the results of this. I know you mentioned Ampyra in another thread, but you need something, like your old treatment to get you back where you were!

      Good luck!!

    • November 4, 2010 at 9:55 pm

      Hi dJunk,

      I’m from Brazil.
      I’ve been doing my treatment in a very good hospital (I actually enjoy going to that hospital; Albert Einstein Hospital in São Paulo). I did one year of IVIG/pred. The first 3 sessions were 5-day sessions, then once every 3 weeks. I was feeling well, not great, but well, adjusted to my live.

      My last IVIG was around Sept/1-2. I started this new job, lots of travel, planes, taxis, and I became more difficult to climb the steps to board the plane (many airports don’t have fingers). Then, 3 weeks ago I was in the North of Brazil and got diarrhea (one day only). I went to Peru 2 days later. That’s when things started to deteriorate. Called my Dr. and he said it could be lack of potassium (prednisone is known to change the amount of potassium; it has happened before; tendons become very stiff after IVIG/pred). Started to drink lost of gatorade, couldn’t get SlowK in Peru; it became very hard to walk. Got back to Brazil after 3 days, a little improvement. Then, got in a plane to the US last Sunday. At the SAn Jose airport I was already walking very slowly on Monday morning. That’s when I realized something terribly wrong was happening. Then I fell over at the hotel, could not stand up on my own, went to the hospital.

      I told my doctor about the results of the tests I did on Monday. Levels of Potassium were normal, they could not find anything “wrong” and sent me home to the hotel. I fell over again when walking to open the door for room service.

      Talked to the doctor again who prescribed oral prednisone, but I can’t get it because I don’t have a prescription from a US doctor. (I tried at Walgreens. At least a good thing about Brazil, most medications you can buy without prescription. If you are responsible about it and have seen a doctor, I guess it is OK).

      I’m pretty sure what I’m experiencing now is the effect of the “demyelinization” of the nerves, both legs and arms. I’ve lost the capacity on my legs to a point I’m afraid to walk because I could easily fall. At least I made it to my hotel room.

      As soon as I get back I’m going straight from the airport to the hospital already told my doctor, to resume the treatment (that is if I get get better and don’t need to go back to the hospital here).



    • Anonymous
      November 4, 2010 at 11:28 pm

      Gosh, good luck, Marcio. I hope you make it safely back to Brazil for some treatment!!

    • Anonymous
      November 5, 2010 at 12:02 pm

      I am one of those who had the stem cell transplant treatment mentioned by Dawn Kevies mom. I was discharged from the hospital on Sept. 26; since then I have noticed improvement, particularly in the areas last and least affected — arms and hands. Also, I have renewed energy, despite the fact that I am still recovering from chemo. CIDP really sucked the life out of me.

      My legs and feet are about the same, but that is not surprising, since I have suffered axonal damage there, and that takes quite a while to reverse, if it does at all. The good thing about the SCT procedure is that it gets rid of the old immune system, and therefore the factors responsible for your CIDP. The idea is that the stem cells are introduced into a pristine environment (bad cells destroyed by chemo) and therefore can grow into healthy immune cells. That means no more drugs. In fact, I am about to go off prednisone all together.

      I would recommend investigating this treatment option. It is headed by Dr. Richard Burt out of Northwestern Memorial Hospital. The good news for you is that there is an affiliated program in Brazil, also headed by Dr. Burt. I can’t tell you where, but I suspect it is located in one of the 2 major cities.

      Check out his website, stemcell-immunotherapy.org.

      Oh, I should point out that this is an autologous stem cell transplant, meaning they use your own cells–so no concerns about compatibility

      Good luck.


    • Anonymous
      November 5, 2010 at 3:10 pm

      My advice is that you need to either get into a hospital here in the US or get back to Brazil ASAP. You are rapidly progressing & that is cause for concern. If you start to feel shortness of breath, have trouble breathing at all, chest pains or trouble swallowing you need to seek medical help immediately.

      Honestly, if I were you I would get on the 1st plane back to Brazil. If you go to the hospital here in the US you are going to be stuck with some pretty hefty medical bills to pay for. If you leave soon then you can (hopefully) get back before your illness progresses any further.


    • November 15, 2010 at 5:09 am

      Hello all,

      I made it home. I’m still not able to walk properly, very weak, even after 10 days of oral prednisone.

      After all those terrible moments away it is good to be home again.

      thanks for all your support.



    • Anonymous
      November 15, 2010 at 9:55 am


      I am glad you made it home. I know how you feel, the multitude of emotions, and the desperation to get better. I hope God gives you the strength you need to get through this battle.