cellcept/ cyclosporin/immunosuppressants questions

    • March 4, 2012 at 11:49 pm

      when taking immunosuppressants for cidp are they usually taken alone or with ivig? I see that a lot of them are available in pill form instead of iv—is that how most of you have taken them? Are there certain ones that have been more succeccful than others for cidp–seems there’s quite a few to chose from?

    • March 5, 2012 at 1:59 am

      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.

    • March 5, 2012 at 2:03 am

      Hello Lori,

      There is a host of immunosuppressants that could be taken. Probably the four most common for CIDP are CellCept (mycophenolate mofetil), Imuran (azathioprine), Cytoxan (cyclophosphamide), and Rituxan (rituximab). The first two work mostly but not exclusively by interrupting T-cells. Cytoxan seems to work by suppressing bone marrow and also by interrupting T-cells. Rituxan works by interrupting B-cells. CellCept and Imuran are most often taken by mouth. Depending on dose, Cytoxan can be administered orally or by IV. Rituxan is administered by IV. Cyclosporin has also been used.

      What works for one person may not work for another, so you just have to try them. Many doctors hoped CellCept would be the most effective, but that has not proven to be the case. If it does work though, it carries the fewest severe side effects. Imuran is often considered more effective than CellCept, but it carries more serious side effects. Cytoxan is riskier still, but might be more effective. Rituxan seems to have less risk overall, but it is relatively new, so the long-term effects are not known.

      I have to take some exception to what Dawn said. All immunosuppressants carry a cancer risk, it is just a matter of degree. As an indication of risk, CellCept and Rituximab are not listed as carcinogens by IARC (International Agency for Research on Cancer), while Imuran and Cytoxan are listed as known human carcinogens. Dr. Lewis’s comment about CellCept’s CNS involvement concerns the very small risk of developing progressive multifocal leukoencephalopathy (PML). Nearly everybody has the virus that cause PML, but CellCept suppress the immune response to it in some people, leading to PML. PML is a demyelinatiing disease of the CNS, similar to MS, but much more rapidly progressive. CellCept is a commonly prescribed anti-rejection drug, but fewer than 30 cases of PML have been reported. The risk of PML is small.

      Discuss these with your doctor. I think all of these carry what is called a “Black Box Warning”, which means that your doctor must have experience in using them before prescribing them. This warning is also an indication that these are riskier than average drugs.


    • GH
      March 5, 2012 at 2:51 am

      That’s an excellent summary, Mark.

    • March 7, 2012 at 10:43 pm

      Thanks MarkEns– I agree that was an excellent summary. My Dr did mention rituxin to me once a few months ago. The last time we talked about it, she said that “she could not find any evidence showing it would work for me” ??? I did not question it much at the time because it was right around the time I was preparing to try the PE. I will now, when I see her later this month.
      I cannot find any information that determines whether or not something will work for cidp, or what particular immunosuppressant will work for cidp other than trial and error—-unless I’m missing something here???

    • GH
      March 8, 2012 at 1:12 am

      My understanding and experience are that treatment of CIDP generally involves a bit of trial and error.

    • March 9, 2012 at 12:30 am

      Yes definitely GH. That is what I’m using for my reasoning to add the immunosuppressant along with the ivig. I’m staying stabile on IVIG alone, maybe with adding the immunosuppressant I can improve. Possibly even do away with the ivig and just take an oral immuno. would be nice too 🙂 I like my dr but find her to be a little too conservative with the treatments–guess i need to be a little more assertive.

    • GH
      March 9, 2012 at 1:42 am

      Medicine is by nature conservative, because of the potential for harm. I prefer a conservative approach, myself. I don’t how the decision is arrived at to use immune suppressant drugs. In my case, I have not been on IvIg since the early treatments which didn’t help much. That may have figured into it.

    • March 10, 2012 at 12:41 am

      I think the decision is different for each person. I would not consider it if the first line treatments were helping me improve. I got worse on the prednisone, no remarkable response from 5 PE’s and ivig is only slowing the progression. So i am thinking of asking to try an immunosppressant with the least side effects first.
      I guess that’s what makes the disease so hard to treat—what works to “reboot” ones immune system, hardly effects anothers.

    • GH
      March 10, 2012 at 4:59 am

      Lori, the only treatment which can be said to “reboot” the immune system is the stem cell treatment which is in clinical trials. Much has been written about it in this forum.

    • March 10, 2012 at 2:01 pm

      Hi Lori- I am currently on Imuran 50 mg/day ( azothioprine ) and 20 grams of IVIG every 10 days. I have been on Imuran for approx 18 months. I tried cell cept first but could not tolerate due to side effects. I get no side effects from Imuran but there is a genetic test one should have done prior to starting as some people lack an enzyme to metabolize the drug properly. In my case the decision to add was to try to decrease my dependence on ivig as I was receiving weekly at the time and to decrease relapses which were happening about every 6 months. So far it has been successful. I did maintain the weekly ivig for the 6-9 months while waiting for Imuran to fully kick in. In terms of cancer risk, this was demonstrated in studies at high doses in transplant patients who are on multi drug regimens. At lower doses in autoimmune disease like rheumatoid arthritis and lupus this association is less clear. Also confounding this are that many autoimmune diseases like RA and lupus carry higher cancer risk to begin with and it it helpful to keep in mind that in terms of absolute risks the numbers are still low. I wish you luck with your decision making and wish that none of us had to faced with these choices!

    • March 10, 2012 at 8:32 pm

      GH–yes I have read the information on SCT. It is something i would consider, to be rid of this disease and all the treatments. I just wish it could be done more locallly, and not have to travel so far to have it done. But–i haven’t ruled it out even though my Dr is totally against it.

      Shellbones–what did you experience for side effects on the cell cept? I am a litttle nervous about trying any of them due to my bad response to the prednisone—but really want to stop this nerve damage and feel strong again. now that you are on the imuran are you completely off the ivig? Do you take pill form or IV imuran? I wonder why anyone would choose to have it iv if they could just swallow the pill—there must be advantages and disadvantages to each???
      yes i agree–i wish none of us had to make these decisions either 🙂

    • March 10, 2012 at 11:09 pm

      Lori, to answer your questions- I am still on ivig but am in process of weaning down slowly- I see a neurologist at mayo clinic who recommended a wean over a year or two so currently I am on every 10 days from every 7 days – it has helped with the relapses – it has been one year since my last relapse whereas before imuran even on weekly ivig , I was still having relapses some requiring hospitalization. In terms of cellcept, I had severe abdominal pain, nausea, felt shaky and “wired” all the time and had terrible insomnia I lasted 3 weeks to see if side effects would go away but I just could not tolerate it- many people do very well on it however so don’t let my experience scare you off. I take imuran in a pill form I take a relatively low dose once daily. I do have to get bloodwork every month while on it to check blood counts and liver function- I have a port so they draw it when I am in for my IVIG treatments. I found that if you go on Lupus or Rheumatoid arthritis or Chrons disease info sites or forums you find lots of info on these meds as they are used routinely for those autoimmune conditions –
      I too keep my eye on the stem cell transplant and If I got worse I would certainly consider but the neurologist at the Mayo gave me a great quote that I often think about when considering treatments ” The punishment must fit the crime” So true! Please don’t hesitate with any questions for me if I can help.

    • March 11, 2012 at 4:17 am

      Do you go to Rochester Mayo shellbones ? I went there in june to see Dr Dyck for a second opinion and to get a definite diagnosis. The reason i ask is because that was the same quote i received from Dr Dyck when i brought up the SCT subject to him.
      Thanks for the info on Imuran, i will check out some of those sites. There must be a lot more info and personal experiences on those sites since all of those diseases are much more common than cidp.
      have you gained back all of your strength since starting the ivig and immunosuppressant regiman? how long did it take to see results from the imuran? did you have hair loss from the immunosuppressants–or is that just usually from the large doses used for cancer treatment?
      thanks for sharing your experience–there is so much more info on this board than anyplace on the web for cidp.

    • March 11, 2012 at 1:49 pm

      Hi Lori- I did see Dr Dyck at the Rochester Mayo – so funny he said the same thing to you! It was his recommendation to start an immunosupressant- I have been there twice now first for second opinion and confirmation of dx and once for follow up – I have not gained back all my strength but am definitely better than prior- I am having trouble determining what is reconditioning vs actual weakness- my legs do fatigue when I overdo and I am one who gets a lot of increase in tingling and paresthesias with activity- I used to be very active prior to CIDP I had done 100 mile bike rides, was a runner and rode horses prior and have gotten no where near that level now I am tired after a trip to the grocery store. I also have a new diagnosis of mixed connective tissue disease/ lupus and not always sure how to sort out the various symptoms.
      It took me really about 9 months to see results from Imuran – Imuran takes a long time to work . cellcept works faster. I have noticed some mild thinning of hair but again I have so much going on not sure what to attribute it to – I am 46 . My husband thinks my hair is the same so not sure how objective I am about this. I agree this site is invaluable and it is amazing how many common experiences we all share. Keep us posted!