quick poll on remission

I have this abstract that has a chart of 10 patients that were followed. Some went into remission w/in 2 years, one was 14 and all other ranges in between. As well, a couple still were on ivig at the time of the conclusion of the study. Just my mom opinion, not sure how much it is worth, but if you are having weakness, tripping and issues with your hands, maybe you need to have the treatment schedule adjusted, maybe every 3 or 4 weeks apart. When Kevin is on a regular schedule and not having what we think might be leaky gut symptoms, he is pretty cidp symptom free. Currently we are trying to wean down and our other problem is flaring, so I am having difficulty telling a cidp relapse from our other issue. There are a few people on the site in remission, but for the most part, not. On the other hand, more than likely, those in remission probably do not come on the site anymore, so we do not have a true sampling. With the exception of the few…Pam H, Cody Stanley (Liz) no others come to mind right now. Good luck!
DAwn Kevies mom

No remission for me either. But hopeful I will someday. Gary

I haven’t experienced any remission. It been a very slow downhill slide. The IVIg may be helping slow things down but it hasn’t stop it. I can complain. I have hear too many stories that are far more serious than mine. I’m just happy to take one day at a time and enjoy what I have while I have it.

[QUOTE=Jim C]I haven’t experienced any remission. It been a very slow downhill slide. The IVIg may be helping slow things down but it hasn’t stop it. I can complain. I have hear too many stories that are far more serious than mine. I’m just happy to take one day at a time and enjoy what I have while I have it.[/QUOTE]

No remission here either….I could only hope for such a thing. I am also on the “downhill slide”. My recent nerve conduction study shows marked progression of symptoms since October’s test. 🙁 Wishing you the best!

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.

I also have had no remission after 2 years of monthly IVIGs. Pain was starting in my arms a few months ago and I was started on prednisone which stopped that. Now the dose is being reduced and im finding I am getting nerve pains in my legs and more fatigued. I am having more trouble standing and know I should pull out the walking stick that is in the corner of the room…but keep pushing myself. On the whole some months are better than others….as long as I can still walk I feel blessed. Good luck and take care. Jet

There’s a relapsing/remitting course of CIDP, and also a progressive form. I started with the r/r, during which I only needed IVIg every six to eight months. Four years ago I started going downhill, and the IVIg stopped working. I’m now considered to have moved into the progressive form of CIDP. I spent several months on high dose IV steroids and azathioprine, which stopped the downhill slide and allowed for some improvement in function. I had to stop the steroids because of the side effects and am now on monthly IVIg with the azathioprine, and although I’m not improving according to tests, I’m now stable and able to work at rebuilding undamaged muscles.

Keep fighting,

Deb
London

hi deb and others

This is not good news at all. Seems to me the medics have little idea of how to treat this thing.

I am very despondent with no treatment or diagnosis at all.

I wonder if all the stress from seeing indifferent Drs doesnt just make it all worse and I should just be spending my money on a sunny beach in 5 star hotel hooked up to intravenous opium.

Its so tiring fighting to get taken seriously by Drs with the prospect of a slow decline anyway.

john

John,
I don’t have cidp, Kevin does, but I agree, all of the docs increases the stress which increase his symptoms and mine as well. Can I join you for the iv opium?
Dawn

[QUOTE=ukguytemp]hi deb and others

This is not good news at all. Seems to me the medics have little idea of how to treat this thing.

[I][COLOR=”Navy”]most don’t if truth be told …[/COLOR][/I]

I wonder if all the stress from seeing indifferent Drs doesnt just make it all worse and I should just be spending my money on a sunny beach in 5 star hotel hooked up to intravenous opium.

[I][COLOR=”Navy”]May I join you? Y’know, since Arthur C. Clarke died, Sri Lanka has an opening … 😉 [/COLOR][/I]

Its so tiring fighting to get taken seriously by Drs with the prospect of a slow decline anyway.

[I][COLOR=”Navy”]Keep looking. Keep reading … any medical journal articles you can get hold of … and make copies. You will be more informed than the docs you’ve been cursed with, but time will come when you find one willing to listen and learn.[/COLOR][/I]

john[/QUOTE]
[I][COLOR=”Navy”]Rocky[/COLOR][/I]
[I][COLOR=”Navy”]I’m being told by a pop up that my message is “too short” … is this enough to pass muster? We shall see ….[/COLOR][/I]

[QUOTE=Dawn Kevies mom]John,
I don’t have cidp, Kevin does, but I agree, all of the docs increases the stress which increase his symptoms and mine as well. Can I join you for the iv opium?
Dawn[/QUOTE]
Yes dawn

It will be like Apocalypse Now 🙂

Its a cruel irony that the very people supposed to be helping actually make it worse

[QUOTE=Rocky36][I][COLOR=”Navy”]Rocky[/COLOR][/I]
[I][COLOR=”Navy”]I’m being told by a pop up that my message is “too short” … is this enough to pass muster? We shall see ….[/COLOR][/I][/QUOTE]
Yes Rocky you can join me – you will have to get the CIA to send us the opium tho. They got loads. Unless we can find a local war lord to supply it.

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.

[QUOTE=kittispitz]Yeah, ha on it being a quick poll, at least for me…forgot my password and my hands are a bit shaky…plus, I was typing in the dark which is just silly, but whatever.
I was just wondering about cidp and remission. I have read that most people are supposed to go into remission, and have periods of relapse.
I have had it now for nearly 4 years, and I don’t think that I have had any real significant remission at all. My symtoms between treatments, which happen every 5 weeks, are generally, not severe because i walk without falling too often…but at least moderate. My hands shake pretty intensly if I try to use them for delicate coordinated work, and they are inflammed. I also experience alot of nerve pain burning and the sharp kind as well.
I am also experincing alot of muscle atrophy, so I need to start lifting some weights.
I would appriciate hearing from you about whether or not no remission is normal or not. None of my neurologists really have an answer on this subject.[/QUOTE]

I can’t believe it’s going on 14 years since i had my first sympton affecting my feet back in aug 96. Nope i’ve never been in remission including taking IVIG in those early years as it’s been a super slow decline over these years.

At this stage all i can hope for is all the new medicines and stem cell clinical trials going on for the different neuro diseases that something will pan out in the near future.

If you call “remission” being symptom free, then I will never be there.

If you call “remission” a period of no worsening, then yes, I experience that from time to time.

If you wanted to draw a graph that would represent my journey with CIDP it would resemble a set of stairs with platforms from time to time. Well, not exactly. I read the whole post and came back to correct this. Probably three or four down steps, and then an up step then a platform, then maybe a step down, then platform, then a couple down, one up, platform, then one down platform, etc. etc

I have periods of decline where I get worse, and worse, then maybe I get a little of it back, and then hold steady. But I am always worse than where I was before I slipped. Then maybe I am good to myself and hold ground for a while, then slip down maybe a couple of steps, maybe no bounce back. Then hopefully hold ground.

I think after many years I can recognize the way CIDP hits ME as being something like that. In my case can you call it remission? It doesn’t go away, I will always have these residuals, they never go away, but if it isn’t getting any worse, I feel like it is a moral victory at least.

If you no longer need medication for your CIDP, and it is not worsening that is certainly great news. If your CIDP is controllable that is also great news. Otherwise you are working towards arresting or controlling it. After that it is damage, and how to live with the residuals left over from the CIDP.

I thought that I was in pretty good shape. For the past year or so I had been on a platform, holding ground, generally feeling good. Then I went back to work part-time. Some of the weeks were 35 hours, the first couple were 50. My body didn’t speak back, it yelled. I developed a new area of numbness, my pain increased, and so forth and so on. When I get the hours down in the lower 20’s, I feel so much better. Stress goes up, problems re-occur.

So, out of “remission” and back into “a bit more active”. I need meds, and rest. I am hopeful for no permanent damage, but I feel that there will be.

So, as always, listen to your body. When you do too much, stop and rest. Otherwise, the C (like Pam says) stands for Chronic and that means a long time.

I’ve been away from the forum for a while, but a visit last week to my neurologist prompted me to come back and see what is going on… I believe that I am in remission and have been since about Sept. or Oct., 2005… I was first struck with CIDP around July 4, 2005 and by the time it was diagnosed, I was beginning to feel stronger… I have had no treatments of any kind except for taking gabapentin and now amitriptalyn (pardon my misspellings)… The gabapentin got rid of the constant pins and needles in my hands in about a week… Aside from that, I have been pretty much the same since fall, 2005… I still cannot stand for more than a few minutes (walking is actually easier on me) and trouble with using my hands, but aside from that I am fiine…

I am currently researching an article that was in the GBS/CIDP newsletter thingy that we get every so often (once a month..???) about research on proteins or something that block total recovery and leave the residual effects… I was telling my neuro about it and had brought him in the article but I don’t know if he ever saw it… He doesn’t seem to know what I am talking about… He gave me his email so I can send it to him (the pertinent information) if I find it… Searching for “residual” brought me to this discussion…

Wishing everyone well or weller at least… **S**

Aimee

Hello,
It has been a while since i posted and I apologize for that. My son had just turned 5 when was diagnosed. He was almost 10 when his doctor said he does no longer need his treatments. He is now 11 yrs. I think the trick for him was the amount and schedule of his IVIG. We went to Johns Hopkins for his doctor. He was 8 hours away and our insurance for going out of state was almost nonexistent. At the time we had good credit and were able to take out loans, so we were able to do this for him. Over the years we have incurred monotonous debt, but the outcome was worth any amount to me. We ended up at JH because we were going to Children’s Hospital in Pittsburgh for 1 year and a team walked in one day and told us they did not know what else to do for him. He was at the time on 2 week intervals for IVIG. I found the doctor at JH and made the appointment myself. We owe him so much. I just wish more doctors were more aware of CIDP.

He has not had any ivigs or any related medications for about 1 1/2 years. He runs, walks and is on a basketball team. Issues he has been left with: he does not run very fast, he has problems opening tops of bottles/cans, he has difficulty tying his shoes, his shoes wear out because it seems as though he is heavy footed.

Joey’s Mom

Kitti,

Reading through this thread, my first thought was, “What is remission”? Might be good to offer more of a definition.

Since I’m still fighting for a diagnosis, I can’t even say for sure that I have CIDP…I’ve had one neurologist suggest it, and two others “poo-poo” the idea.

But, in the 9 months since whatever I have has gotten a lot worse, I can say this: I’ve had periods…a week or two…when I feel a little better. Not as fatigued, not in as much pain, etc. Not all my symptoms disappeared, but I did feel a little like my old self. 😮 Unfortunately, those periods are usually followed by being slammed back down to the mat; don’t know if that’s because when I feel better I overdo it (that’s my thought at the moment) or if it has little to do with anything I do, but that seems to be the trend.

I you’re defining remission as a complete return to your “pre-CIDP” days, or a complete lack of any symptoms, I doubt you’ll find anyone who has had that, based on what I’ve read here over the past six months. As I said in a previous post; “You can never go back…all you can do is move forward”. In fact, I saw a great quote a few days ago, and even posted it on my Facebook page…

[I][B]”Nobody can go back and start a new beginning, but anyone can start today and make a new ending.”[/B][/I] 😉

Elmo

John,

No need for CIA or War Lords…go to Turkey. Any shoe-shine boy or carriage driver will sell it to you! 🙂

Who is giving out the IV opium? And where can I sign up?

Kelly

Maybe someone going into ”remission” had more of an GBS disorder than CIDP?

I’m hoping that is my case.. gbs remission…
Although I get periodic returning of symptoms… Especially, like a bout with strep throat….
I would say I am in remission….. deano

About 5 years ago I found many sites on this issue, they’ve since disappeared, but…I thought that the ‘school of thought’ was that there wasn’t a relapsing/remission syndrome per-se for CIDP? More like the ‘inflammatory responses were less “active”‘. As A result of this all, the more variations of CIDP have been diagnosed, but, treatment options are still the same.
URL [url]http://neuromuscular.wustl.edu/alfindex.htm[/url] URL
Face it, there are a LOT of neuro issues out there!
IF my readings of MS which also has had ‘relapsing/remitting’ versions’? The docs there are also re-thinking the ‘processeses’ by which we are affected then maybe re-affected.
While any one of us can have FLARE-UPS? I am not surprised, I had some subtle ones that lead to disaster this past year. By ‘subtle’? I mean things, actions/reactions happened slowly then faster…..Took about 4 months but? Not one outside new issue seemed to be a contributor! For reasons? One can only guess, and nothing can be proved-ergo…it is a ‘trend’ not a cause or reason.
Before last spring? I’d almost felt ‘normal’ aside from residual pain.. I was active, and out and about on my own. Now, I am not. At times? I actually fear to be out on my own! Caution is my valor or something…..
I have never been ‘pain free’ since onset. I do feel better after infusions? But still not ‘normal’ by any means.
THAT is something I wish for one and all here! It can and will happen in our lifetimes I believe. As we have witnessed thru others? This CAN happen before we are too old to appreciate it! Good things to all and hope as well!