October 26, 2011 at 8:40 pm
I have been researching the chemo drugs–my 4 month ivig regimen is coming close to an end in november. my next step is to try plasma exchange if the cidp is still active after my Dec emg/ncv. If no success there my Dr mentioned rituxin.
I mentioned sct–she thinks rituxin??? Of the people who have taken chemo medication what are the pros and cons of rituxin verses ciclosporin. I noticed ciclosporin is made in pill form verses injection–which is a big plus to me. My dr said rituxin did not have the side effects of being sick ,losing hair, or worrying about being around sick people etc of the usual chemo. Do you people who have taken it find this to be true?
I’ve read all the medication facts, side effects listed etc—what i would really like is personal experience good or bad for each, how long it took to see results, given the choice which chemo drug would you take? Lori
AnonymousOctober 26, 2011 at 10:46 pm
I did Rituxan. Eric Vance was on it for years, and passed away after getting an infection which he could not fight.. Jphn C. was on it for years an it quit helping him. I was on it for a year and a half and am in remission (see thread I got some Rituxan and) Most of my problems with it was a sore throat I was warned to stay away from people that were ill, and immediately seek help anytime I felt sick.
Keep the faith.
AnonymousOctober 27, 2011 at 12:08 am
I’ve done a very small amount of research on Rituxin. I know that it will deplete all of your B cells.
Lori, Dell’s Mom, will rarely post here. Dell was on Rituxin to treat his CIDP. The last time I spoke with Lori Dell was doing well.
Google Rituximab & IgM lymphoproliferative diseases.
AnonymousOctober 27, 2011 at 1:37 am
Lori- This is something I have heard mentioned quite a bit over time. I never researched it but I do believe if the SoluMedrol doesn’t do what needs to be done- That is my Neuros next option. I think it is hard to figure it out because when most people start doing well- they split. Can’t blame them for sure. But for those of us seeking help and answers- it leaves us hanging.
October 27, 2011 at 7:03 pm
thanks everyone 🙂 i have been reading through a lot of rituxin discussion on here and have learned a lot. i have never been told i had the anti mag type of cidp—just told atypical cidp. after reading the rituxin discussions i checked my labs and i do have elevated igm. I, also like others mentioned in their posts, got worse with prednisone.
sounds like the rituxin knocks out your b cells not your whole immune system like cytoxin does. I will keep reading and have many questions for my dr before the time comes to try this. Lori
AnonymousNovember 3, 2011 at 9:42 pm
I actually, did Cytoxin, when I went through Chemo. I tried, IVIG, Plasma Exchange, and Steroids these did not work. Chemo went really well for me though, I was in a wheelchair and I wasn’t able to move my legs and I could move my arms partially. I am now back at school and I am walking with very little assistance. I only have to wear a AFO on my right foot.
I have already decided that next time I relapse I am opting for a Stem Cell Transplant.
AnonymousNovember 4, 2011 at 8:35 am
I was in your same situation when my neuro told me that we had just about run out of treatment options and the next thing to try was the chemo. At that point I looked at what/how much chemo would be involved and decided if I was going to go through all that, I might as well do the sct procedure and at least get an immune system reboot in the process! The sct protocol uses both types of chemo, so I don’t know the difference. I am bald but I didn’t get sick from either chemo …
Additionally is the consideration of the length of treatment time … it is probably less invasive on the personal life to stay home and do the chemo rather than spend almost 2 months in Chicago. I believe it is the chemo that puts the CIDP ion remission – the stem cells just help us to make a faster come back.
I wish you the best as you consider all your treatment options and hope you find the one that puts this in remission for you.
Ryan – so glad to read your post! I’ve been praying for you since I first came on the forum and your story touched my heart.
November 4, 2011 at 6:51 pm
thanks again everyone 🙂 such great info–we are so lucky to have this site and be able to learn so much from each others experiences.
I have read your story too ryan–and hope there is no “next time ” for you” and that you stay “cidp free”
I think you answered my question Linda–regarding the time issue of chemo-vs sct—-. due to the fact that i am not very disaabled from the cidp and have no pain–(was fortunate for an early diagnosis and early ivig) and that I have a business to run and children still at home i think the “at home” rituxin will work better for me if it comes to doing chemo than having to travel for the sct.
Im on week 14 of the 16 week ivig regiman dr dyck from mayo set up—(keeping my fingers crossed) it FINALLY feels like it might be doing something. Walking has become easier and faster this week and Ive noticed my calves are starting to get a little more muscle back. Wont know til Dec 16 (next emg/ncv) whether it has actually induced remission. Lori
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