Reply To: cellcept/ cyclosporin/immunosuppressants questions
Well, we have never used them but I always keep reading because I like to keep our options open should things ever change. Some have used cell cept, it was suggested for us intstead of ivig because it would be easier to take than ivig, less expensive etc. Well, I shot that down and sited the obvious cancer risk to the neurologist. This was in the begining before he knew that I was the look into things kind of mom and not do what ever the doc says mom. So when we went to the next appointment I brought all of my research with the cancer issue, the literature that said it has not even been studied on children and the article that showed in the long run ivig was actually cheaper because the longterm costs of continual battles of cancer and the side affects from additional treatments for cancer were far worse than ivig. Additionally at the symposium in Chicago, Dr. Lewis from U of Mich. stated that cell cept also cause CNS issues (central nervous system ) Well isn’t the NS what we are trying to fix? How do you know if the CNS involvement from cell cept is causing the deficit or if it is a relapse?
Imuron was used too a few years ago by some patients, one got sepsis from it and did not see improvement from it.
Rituxan was used by many, Andrew I think had good results from it, I think Norb did not have as good of an experience. You would have to do a search on them.
Cytoxan has been used by all of the stem cell participants as part of the protocol and on its own by several others. The ones who used the cytoxan independantly have gone into a remission, Ryan, who I think goes by Blue eyes and pam ho goes by Pam H. They are both helpful with questions you might have, or look under old posts.
I have researched cytoxan as an option for us and if ivig was no longer available or it stopped working for us, it currently is the one I would choose for my son. The other drugs had debateable results but the cytoxan seems to work for all that have tried it. Currently we respond to ivig and there is a chance during puberty of going into remission as well, those who respond well to ivig to sometimes go into remission. Untill something would go south, the ivig is what we are going to continue with because cytoxan like all imunosuppressants comes with risks. Some people have no other options and it becomes a matter of quality of life.
The good thing is that there are all sorts of options and one day at a time we have to figure out what ones work best for each of us.
You alos mentioned something about using ivig and the imunosuppressants. Some use both, some one or the other. Personally other than with the cytoxan, I would feel uncomfortable using just a chemo drug because some of them take six months to start working, what happens during the six months? Something else that I never really hear anyone talking about that I often think about is, using ivig while on the suppressants would be the only way to go, for instance if you have pidd (primary immune deficiency disorder) you are given ivig to keep you healthy, so if the chemo drugs essentially are putting you into a pseudo pidd of sorts, why wouldn’t you try to cpunteract that? Maybe the ivig would be counterproductive because it boosts the immune system? I have no idea? They do use it with cancer patients and aids patients while on imunosuppressants? Too complicated for my small brain.