I have been fighting CIDP since 1996 and have had many ups and downs as we all do. Have tried pretty much every treatment you read about on this site as well as many of the MS drugs.
We all respond differently to each treatment , so it is important to work with your doctor to consider different treatments and/or combinations of treatments untitl you find the one that works for you.
Currently my routine is PE every three weeks followed with a 500 mg dosage of solumedrol then the next day I get 100 grams of Gamunex. Has held me pretty steady for almost two years now, but I did have a major setback three weeks ago. My doctor immediately put me on a very high dose of oral prednisone for one week and what a difference. I went from dragging my left foot and barely able to walk on my own, to being able to drive a 1300 mile vacation trip last week. For me it have been “a silver bullet” every time I get into trouble. As I said, not everyone reacts to these drugs the same.
I did have cateracts(?) but surgery fixed them.
Generally, if I do not respond to the week of oral prednisone, then I get three days of 500mg methoprednisone IV. I am 67, so I can relate to the age thing.
Hope this information is of some help to you. Keep plugging away and stay positive.
I believe that you are talking about solumedrol (methlyprednisolone) infusions. I was in very bad shape & had gotten many loading doses of IVIG, as well as biweekly IVIG for weeks after that & nothing helped me. When they started giving me the solumedrol infusions, I got back some feeling, had a little use of my hands & just a little bit of strength. For me that was enough, as it kept me out of the nursing home. I was able to feed myself (not make a sandwich thought), pull knit clothing on lying down, & use a sliding board to get from my powerchair to the bed & on & off the commode. But it turned out to be a short term fix, nothing more.
It depends on how bad he is & what age. I was 48 & did develop cataracts & 80# in 21 months, but it did enable me to remain at home with assistance. I would try it before going through the cytoxan protocol.
I believe that because CIDP is an inflammatory illness, the solumedrol (steroids) must knock down some of the inflammation, thus allowing the nerves to function better. I was on weekly solumedrol infusions for 21 months, & yet neither my husband nor I really know how they work. But they did make me stronger, not much, but gave me enough use of my hands to feed myself & enough strength in my arms to do tranfers using a wheelchair.
When I finally went off of them I didn’t notice any weakness, just a lot more pain than I knew I had. Like muscle & joint type of pain; as steroids do mask the pain. If Dell is truly weaker strengthwise, I think he might have to stay on them longer, but at a reduced dosage.
I just finished reading this entire thread & felt from the very beginning that you probably had CIDP & not GBS. Oftentimes neuros will start with infusing solumedrol (methylprednisolone) first, as it is cheaper & does work much of the time for CIDP. I was given 1,000 mg (1 g) for 5 consecutive days, as a loading dose, so that is possible that you were given that much. But I was basically bedridden at the time & they had already tried IVIG & PE first. I agree about the imuran, only one drug should be tried at a time, so one knows what it is that is actually working for you.
Usually with steroid infusions the results should be immediate, so if you haven’t seen any improvement by now, you probably won’t. I think you should be given IVIG ASAP, enough time has been wasted. Besides, it seemed to work well the first time around. BTW what physical condition are you in currently? Have you declined at all since December?
I am so glad to hear that Dell is doing so well. I was suprised to learn that this is now the first line of treatment used at the University of Minnesota, but they qualified two misconceptions about solumedrol: first off, they are not talking about oral prednisone (which has more side effects & is harder on the stomach), secondly, if the correct dosage is found, which is about half of what they used to give adults, then the side effects usually associated with steroids are greatly reduced. I am sure that it took a lot of experimenting to come to this conclusion. Also, these are CIDP patients that do not get IVIG as a treatment, only the solumedrol. Maria (Aphrodite from this forum) lives in Cyprus & has been getting solumedrol for years as her only treatment & doesn’t seem to have any permanent adverse side effects.