Hi Peggy,
Going into a long term remmission is different than just waiting till symptoms appear again. This is kind of just my “uneducated” theory. Here goes. To have the best chance of remission, (if you know you have relapsing/remit. cidp) you have to give the body a chance to build up antibodies to over power the autoantibodies (cidp) I have read some abstracts that demonstrate people go into remission anywhere from 3-13 years of regular scheduled ivig. It was based on continuous ivig and I think there were 15 people in the study and 11 were in some form of remission. Some as little as three months to some current to date. I forgot about cody stanley, until she mentioned it, but Liz too is in a remission for some years, Pam H, and a new member as of late. So it is possible. But if you are not doing something to overpower these antibodies regularly (IVIG or what ever treatment you and your doc decide on) you have no chance. Once you feel the symptoms, it is too late, it has already started days or weeks ago, before you could tell. Then you have to start the whole process over again, we did that three times with Kevinbefore we finally got to this point. Now Kevin is getting loading doses every 30 days over 4 days. The weakness has subsided completey, now we just battle the pain and fatigue that comes with overdoing things.

It is imperative that your doc NOT take the wait and see approach for too long. He may be trying to guage how long you can go to figure out the best treatment plan. Ask him if this is his intention with the waiting. If he wanted to be aggressive, he could start you on a loading dose over 5 days and repeat that every 28 days (unless you feel a decline prior) or if you did feel a decline, repeat the loading dose at thAT time and then repeat after three weeks, or even two. It is an art, finding out the schedule that works best for you. Some on the site also have solumedrol w/ivig and it helps them. We do not, so I cannot comment, but others who do will be along. Once you are on ivig regularly for a year or so, then your doc could spread it out a week longer and do that plan for a good time and so on. Finally getting off ivig. This is what I pray for every day for Kevin and all of you.

A note of importance, every time you falter, you run the risk of more damage and perhaps never healing all the way from your latest flare, that is another reason it is important to stay on top of this monster! Good luck, the more you read here and on line the more you will start to understand. It is sort of a part of our lives now, we just kind of deal with it as best we can day to day. i will say it really does make you stronger in other ways!!! Good luck to you and best wishes1
Dawn kevies mom

Peggy,
About your remission question and time in between, as you already know, the disease has a mind of its own, but Kevins time in between seemed to be the same each time. We had additional treatments each time when we got to a certain point as you (6 1/2 months) We should have gone at three months, because he started feeling symptoms at 4 months, we were just in the same phase as you are now and initially questioning if it was gbs residuals. In best conditions, ivig has a full life of 42 days, so anything past that is ivig free, on your own, so I guess technically that would be a remission. So remember, you never want to feel symptoms, because then it all starts over. On another thread I figured out how much you actually can heal in a year if there are no flares, and it was 14.27 inches or so. So if you flare, you start the healing process from square one. Its kind of like dieting goes on alot faster than it comes off, the damage happens faster than you repair.
Dawn

Peggy,
I didn’t understand when you mentioned that he did not think you would need more IVIG treatments after this one, then he said he didn’t think it would go into remission again. So how is he planning to treat you if you do go downhill again? You are looking for answers that no one, not even a specialist, can answer. Because the one thing that those of us with CIDP know for sure, it is very unpredctable & every person with this illness is different. Some do go into remission, but since you have relapsed chances are you might need some kind of maintenance treatments. But on the positive side, look how long you lasted between the past two?

I understand your confusion, but do not wait until you are unable to walk before you get IVIG. Each time the myelin is damaged, the less likelihood that it will recover as well as in previous relapses. Just like with pain, one must always try to stay ahead of it. It appears as though you have the relapsing remitting type of CIDP, just feel fortunate that the IVIG works for you. I have the progressive type & nothing short of chemo wiping out my immune system even began to stop the progression of my illness. I never got back a lot of what I originally lost 6 years ago. BTW I have terrible “brain fog” & I know it is the CIDP; it gets worse with fatigue.
Pam

Hi Peggy,
Yesterday, this thread came up twice, and I replied on the other one. I cannot find the other one, maybe you can see if you can locate it.
Dawn

Lyrica is only for symptom management and not for disease management–so it cannot be expected to affect the damage to the nerves, it just helps the pain from the damage be less severe. Everyone responds differently to different medicines. Many people on this forum say that neurontin seems to work better in GBS/CIDP. Some people have had good results with Lyrica. Personally, I got dizzy and had terrible muscle fatigue and had touble remembering when taking Lyrica. I have been much better since being changed to Cymbalta.
Listen, no one knows the future, so your neurologist cannot say that you will not go into remission again. Only time and trying will affect that. You have to have both.
Sometimes the flairs are worse because of the previous damage (that there is not a great deal more inflammation, just that symtpoms show up more because the nerves start at a lower place of function). Sometimes flairs are worse because there is more inflammation. It seems more likely to be the first, but for either reason, you may need stronger treatment to get back to your baseline as it is now.
One of the hardest things about this disease, at least for me, is the uncertainty about it. But you have to keep trying and not give up hope. I would look at the repeat treatment as a way to settle things down more and the new medication to help life be better with less pain.
WithHope for cure of these diseases.