Can you be in remission with CIDP?
AnonymousSeptember 2, 2009 at 4:12 am
I have been DX with CIDP for five years now – though looking back over my life I had symptoms of CIDP for more years than I can remember. Five years ago I was really sick. Having to receive solumedrol IV treatments weekly for 9 months PP for 6 months, IVIG and more meds than I can list here. Currently for the past year I am only taking 30mg twice daily Morphine and Zoloft once daily. My question is: Am I in remission? I suffer with extreme fatigue and weakness in my arms and legs which I refer to as residual. Is CIDP the chronic part with you always? I read of folks have episodes and that is why I am asking. Also is CIDP hereditary? Thank you in advance for your thoughts. Always in my prayers……..
September 2, 2009 at 11:34 am
Questions that I too ponder. I notice that Kevin feels weak and tired, increased shocks etc. during a cold or doing too much. However, his last ncv/emg was normal in most areas and borderline normal near his ankles where most of his “residual” area is. The difference between you and Kev, is that you are not on any meds other than pain, Kevin is on ivig. So I cannot make a clear distinction if this is residual pain but still considered remission, or ivig that has put him into a medicinal remission. In my uneducated mom opinion, since you are not on any ivig or steroids etc. any longer it would seem like a remission. The only question I would have, could the morphine be masking pain in a way that you are not certain if it is worsening or not? Is it possible to get off the morphine slowly to guage the level of pain? Do you think the morphine could mask the weakness allowing you to forge on and not be aware that weakening is happening? This stuff is so hard to figure out. We are currently winding down on ivig ourselves to see if we are in true remission. We have gone from 125g to 80 this month and 70 next month. We are going to hold at 70 to see if there are any declines, if after 3 months of positive results we will lower again. Good luck to you! I hope you are in remission!! That gives us all hope!
Dawn Kevies mom
AnonymousSeptember 2, 2009 at 11:45 am
We are told that CIDP is not hereditary, but since we really don’t know how CIDP starts, it is possible for other members of our family to have it.
And YES, you can go into a remission with CIDP. I am proof of that. I have been in a remission for seven years now. I think how much we can heal is unknown and probably depends on how soon treatments like IVIG’s were started. After seven years I know now that I will not recover from the damage done during the progressive years of CIDP. I was misdiagnosed during my onset and told I was hopeless, treatments would be useless so it was almost two years later before I found a neurologist who told me otherwise.
I am in a remission. I have needed no treatments for CIDP for seven years now and I’ve shown no sign of a relapse or CIDP progressing again. I don’t think that I can get better then what I am but I feel confident I won’t get worse.
The only way to find out if you are in a remission is to withdraw from all treatments used to control progression. If months or a year can go by and you DON’T RELAPSE, you are in a remission. If you start to relapse without the treatments you are usually on, you ARE NOT in remission. I would go by the longest length of time you’ve done in-between treatments and go without a little longer then that. Do not try withdrawing on your own, do it with your doctors monitoring.
The pain medications we need would not be counted as a treatment used to control progression.
I too refer to what I was left with as residuals, the things I won’t heal from. And fatigue will always be a part of my remission.
AnonymousSeptember 2, 2009 at 1:49 pm
i 2nd what codystanely (liz) and dawn said.
it is possible to be in remission and the best way to know is to be off meds that “hold it at bay.”
i hope you are 😉
i tried twice over the past year to ween off prednisone– only to begin to relapse. i felt it important to know for sure that cidp was still alive and well in me before eradicating my immune system with chemo… (you may or may not know that i am heading to northwestern for a stem cell transplant, beginning sep. 8th.
wishing you the best,
AnonymousSeptember 4, 2009 at 1:06 am
maybe you would call your situation a “plateau”. Symptoms are not getting worse, but you still suffer from residuals. I am kind of in the same place. I get a little worse over time, but it is so slow…….
But I still suffer from residuals, and probably always will.
As to hereditary. If you check into Autoimmune diseases (CIDP is one) you will find that a tendency towards autoimmune disease can be hereditary, but not to any specific one. If that makes sense. Look back into your family history. I’ll bet that there is some kind of Autoimmune disease there. Graves disease, Rheum. arthritis, some diabetes, lupus, gosh the list is long.
Go to An Autoimmune website and read up. I found it to be illuminating.
AnonymousSeptember 4, 2009 at 9:57 am
[QUOTE=Dick S]maybe you would call your situation a “plateau”. Symptoms are not getting worse, but you still suffer from residuals. I am kind of in the same place. I get a little worse over time, but it is so slow…….
But I still suffer from residuals, and probably always will.Dick S[/QUOTE]
[B][COLOR=”Sienna”][FONT=”Georgia”][SIZE=”2″]I like the use of the word “plateau”. It could be where you’ve gotten worse and then leveled off … it could be that you’ve gotten better and then leveled off. I’ve gotten a little better and am leveling off, though, as you say, there are always the residuals.[/SIZE][/FONT][/COLOR][/B]
AnonymousSeptember 4, 2009 at 12:34 pm
I also ponder this subject and the newest GBS news letter addresses this and says that there is not set answer as of yet. The Dr. who wrote the article said that if you have been receiving no tx for up to 5 years you are in remission and that if it is over 5 years, you may be considered “cured”. Let’s here it for Liz being an inspiration to us all. As far as autoimmune disorders being hereditary, we have NO autoimmune in our family on either side except my husband has a cousin that is diabetic and that is all. THERE IS NOTHING ELSE. Now heart disease is another subject. Ha
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