hello, I've been getting Ivig for the past 10 months, now every 3 weeks. IvIg has been a good treatment. After my second round, my CIDP stop progressing. After 5 months, along with the start of physical therapy, I certainly started feeling better. For the last 5 months I think I have been slowly recovering the muscle strength and dexterity in the legs and arms. I still can’t run or jump but climbing stairs and everyday life is a little easier- I make it a point to walk so many steps a day, wobbly as I am. I do feel better a week after each treatment and seem to make little gains in physical therapy each month. These gains in muscle strength have persisted from treatment to treatment. However, the week after therapy I usually feel worse. The neuropathic burning pain in the legs is worse, my balance is worse, and I feel much more muscle achy with everyday activities. My bladder symptoms get worse as does my slurred speech. I don’t feel like doing much. Then a week later everything lets up and I feel a little better. This continues until I get my next cycle of IvIg. The treatment with IVIG then sends me down. I feel like I am still recovering and haven’t reached maximum improvement so I don’t want to stop the treatments of IvIg. However the roller coaster of symptoms getting worse and better every 3 weeks is hard to take. When I feel good, I feel like recovery is possible but when I feel bad, I think about relapses and the chronic residuals of this disease. And it feels like the last couple cycles, the bad feelings are triggered by the IvIg. I wonder if I don’t get the next IvIg treatment, would I continue the upswing or not? Does any one else experience this?
Strangely enough, I've been experiencing the same thing. My treatments are out at 5-6 weeks now, I've made a lot of recovery over the last year, but you're describing the cycle I've seen after about the last 4 treatments. I feel pretty good going into the treatment, then crash for a week after the treatment with burning, numbness, cramps. It peaks around week 2, then slowly starts to get better.
Seems to be the same cycle every time lately, so it doesn't appear to be getting any worse with the effects, just something I've come to expect. But I definitely experience the same emotions that you get. When I'm better, I've got a positive outlook, we've beaten this, etc. Then when I crash I start to worry about dealing with this my entire life. You just have to focus on the positive effects and the fact you HAVE improved.
Sorry I'm not more help, I'm not really an expert as some of the other people on this board are, just wanted to chime in since we seem to have the same response to IVIG lately.
Q: you mention "the neuropatic burning pain" in your legs.I have a lot of burning, but I don't know if it's neuropathic (I have no diagnosis yet, and it's very hard to get to the bottom of this). My burning sensations are in patches spread in various parts of the body (sometimes the lower back, other times both calves and/or parts of the arms, sometimes the soles of the feet and the legs all the way to the thighs). In what way do you experience burning? Does it follow a specific nerve path or is it kind of random? Is it on large patches/surfaces or more like specific parts? Does it move and change place or is it pretty much in the same area of the body?