When the treatment stops…

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

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

Marcio,
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!!

Marcio,
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!!
jdunk

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

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.

Sharon

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.

Kelly

Marcio

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.