We were hoping that we would be off of ivig by now as we have been on it for 2 1/2 years. We know what the cause of my daughter’s cidp is and research has shown that a know cause usually means a quicker remission, but…… We started sub-q 12 weeks ago and my daughter started to go backward about week 6 and we figured out she was being underdosed and it was increased. This disease is AWFUL. Not very many things compare. It is so rare as well. Our doctor says that 50% of adults with this go into remission. I think that sounds high. Prayer changes your odds! God is not into statics.

I went into remission almost 8 years ago, thanks to the cytoxan treatment. I haven’t had an MRI since 2002, but I would be willing to bet that I wouldn’t have any inflammation, as my CIDP or my condition has been the same since2004.

hi, i am new to this site, my daughter was diagnosed with cidp in dec of 06 at the age of 11, was reading ur post today, in dec of 08 she had an allergic reaction to her ivig, and we decided to lay off it for awhile to see how it goes and believe it or not she went into a remission and we thought thank goodness ur better well unfortunatly it didnt last after a whole year without significant symtoms it came back strong and now she has been back on ivig since jan 2010 so to answer ur ? u can go into a remission but it always has a chance of coming back, its a disappointing thought believe me she has learned to live with it and the uncertanty we r now looking at other treatments hopefully we will find a subsitute because her veins r not taking very well anymore i try to joke with her and tell her they r tired too of all these needles we do the best we can…i hope there is some relief for u soon…

I wasn’t going to respond because if I read correctly Kitti was asking if it’s normal to go on and on and not go into a remission. I do believe that I went into a remission 7 to 8 yrs ago (diagnosed with CIDP 1998) because I have not needed treatments or medications since I was taken off them in 2003. I believe I was in a remission in 2002 but I am a slow turtle, a super cautious person when it came to withdrawal. I was hit with heavy residual damage that I cannot heal from, one being dependent on wheelchair, but the “whys” are another story.

I guess I can say that I am in remission, since I haven’t had any treatment since 2003 & I am no better & no worse every day when I get up in the morning. But I am in remission only because of the cytoxan arresting my illness. It isn’t like I am illness free, I have foot drop which forces me to walk with AFOs, use a chair for long distances, my hands have virtually no fine motor, etc.

I think it is called CIDP for a reason, the “C” standing for chronic. Either one has the relapsing/remitting which is treated with IVIG, PE solumedrol, etc. or one has the slow progressive, for which most treatments don’t work (but it is very slow deterioration.) Liz always speaks of remission, but stil depends on a wheelchair to navigate. The only cases of remission I ever remember hearing about were years ago from the children’s forum, & they were teenagers.

I guess I can say that I am in remission, since I haven’t had any treatment since 2003 & I am no better & no worse every day when I get up in the morning. But I am in remission only because of the cytoxan arresting my illness. It isn’t like I am illness free, I have foot drop which forces me to walk with AFOs, use a chair for long distances, my hands have virtually no fine motor, etc.

I think it is called CIDP for a reason, the “C” standing for chronic. Either one has the relapsing/remitting which is treated with IVIG, PE solumedrol, etc. or one has the slow progressive, for which most treatments don’t work (but it is very slow deterioration.) Liz always speaks of remission, but stil depends on a wheelchair to navigate. The only cases of remission I ever remember hearing about were years ago from the children’s forum, & they were teenagers.

Dawn,
You are right to hold out on anything more drastic for Kevin at this point. For one thing, he is leading a fairly normal life right now (not including IVIG infusions), whereas Ryan is not for a 20 year old. But from reading back 7 years now, I also used to ready a lot on the CIDP children’s thread & remission in children was not uncommon. Be patient & always assume it will be “best case scenerio.”

HI MAR, HUN KEEP UP GOOD WORK AN PLEASE STAY STRONG. I got gbs in aug 05 an am disabiled from it perm. I had simialer situation. but I fought tooth an nail I looked like frankin stien but I didn’t quit even though it would have been easy. So from sound’s of this u need to get him to hospital so they can watch him 24/7 until his treatment. This is nothing to mess with. As I learned hard way it strikes when u don’t exspect. I am always scared that i’m going to fall or go in rev but I leave it in GOD’S HAND’S. I am praying now an prayed as i read I know how your husband feel’s. But don’t show fear to him be positive an love an somtimes you have to pep talk him. But as he does get better he may never recover like he was. an this is hard to take I still cry. An the pain is best desribed as hitting your hand’s and feet with hammer as hard as you can. so if he cries out of know were just hold him. it pain an knowing he’s not the same. This still happens to me . I’m only 40 now but this ruinned my life in a way but gave me life in another. It openned my eye’s to how disrespectful I was to other’s in wheel chair’s an walker’s. Wow eye open’er I cried i felt like a terd really I did. but the life I was given I’ve read my bible now 6 or 7 time’s an gave my life back to JESUS i’m far from perfict but i’m forgiven with his mercy. So be ready for a roller coaster of pain tears an all thing’s he took for granted cause it will come rushing in after he get’s back to moving around. just trying to help so you can love himthrew it an keep his will going. pep talk every day all the time give him praise for every thing. cause truth is he’s like a baby he has to learn all over again. an learn his limit’s my wife get’s mad at me cause i go to far an she pick’s me up. some how i’ve found humer in it now i’ll cuss at my leg’s an laugh at same time now.but let’s get ur hubby better. i’m praying for you an your husband. Hun I know it’s hard my wife is tough an she loves me an my three kid’s are tough they were 6,10,9 at the time now they are 11, 14 ,15 an they no when daddy’s in pain cause they get to play x box cause daddy goes nap time every day. have ever since this happend it takes alot out of u . Sorry for rambling but I hurt when I here of other’s having this it makes me cry. I know but when you know how much pain is involved both ways physical an emotional. it hurt’s an still can’t spell or hit right key’s lol. I don’t wish this on my worst enemy. Cause I know the truth I live with it every day 24/7 so i’m praying again as I know other’s are to hope u can read my spelling bad an I hit wrong key’s lot frankin stien hands still lol. night an GOD BLESS GOOD LUCK TO U AN UR HUBBY UR FRIEND JIMMY K.;)

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

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.

Hi Trish,

One of the highly qualified neurologists who spoke at the 2008 symposium said that you are in a remission ONLY when you are off all drugs/medications that are used to control progression and ONLY if you remain stable as the months, years pass. If you came off the drugs and relapsed, you need them, that’s not a remission.

I have been in a remission for about seven years now, stable, no relapses and I have been off all drugs to control my CIDP for five years and remain stable.

BUT, as far as things go for me, I have RESIDUAL DAMAGE, from untreated progresssion during my first two years, that probably will never away. I learned how to “JUST KNOW” and my residuals are not signs of relapse.