which immune suppression drug is safest?

    • Anonymous
      October 4, 2008 at 9:36 pm

      as i decrease my prednisone dosage– down to 35mg– my neuro is suggesting we soon try an immune suppression drug.

      any input or ideas?

      alice

    • Anonymous
      October 5, 2008 at 4:55 am

      Alice that’s such an individual thing… everybody is different, some people tolerate chemicals with no evident effects, others like me can’t take anything without problems. All immune suppressants have side effects, all have the potential for leaving a window open for opportunistic infections or cancers. Many people tolerate Cellcept well, mycophenolate, and it has been used for many years to treat many different types of autoimmune diseases, along with it’s original intention of preventing organ rejection. My doctor tells me the odds of getting progressive multifocal leukoencephalopathy (PML) are extremely low – that there have only been a few reported cases of it out of the hundreds of thousands who take Cellcept. In the long run it may not matter as much which drug you end up taking as it does how you let it effect your lifestyle. I personally know a police officer who has been on Cellcept for 10 years and has never stopped actively working or interacting with the public and has never gotten seriously ill from being immune suppressed.

      Julie

    • Anonymous
      October 5, 2008 at 9:30 am

      For what it’s worth my neuro. wants me to try Cyclosporin to try to help wean off of the steroids. Am gonna give it a shot as soon as another new med one of my other dr’s has me on takes effect.

    • Anonymous
      October 5, 2008 at 9:28 pm

      Hi Alice-adding my two cents worth…..have been on Imuran 50-100mg twice a day-doc has been regulatine my dose depending on my white blood count. Have chronic problems with bronchitis and pneumonia when I take the higher dose.

    • Anonymous
      October 6, 2008 at 12:11 am

      i really appreciate it!
      alice

    • Anonymous
      October 6, 2008 at 4:42 am

      As Julie points out, each person is different not only in how they react and process drugs, but also other factors like other medicines and severity of disease. If someone is not able to walk or breath on their own, most people would use a stronger immune suppressant drug because you really want to optomize the chance for reversal of the illness. If someone has pins and needles, which are bothersome, but not life threatening or life-altering, one looks maybe for a “safer” drug that might have less “risk” of problems from immune-suppression on the body. In our clinic, the general rule of thumb is that cyclosporin/CSA is “safer” from an infection or lymphoma point of view than imuran/azathioprin and this is than mycophenylate/MMF/CellCept, but the “effectiveness” as an immunosuppressant goes the other way. Since our clinic takes care of children with immune problems as well as cancers, we often tell that families that you should not always look at the listings on the pamplets about side effects of drugs and worry about POSSIBLE rare future problems–you have to deal with the one you have, which is by itself serious (and probably progressive if not treated smartly). One of the doctors has this little saying–that if all of us look at the side effects listed for aspirin or tylenol on the bottle or pamphlet, we might never take it, but we all probably have and appreciated the good things that it did (helped the headache, for example) without experiencing all or any of the “risks” that are possible. It is important to be informed about risks so that you know what to watch out for and it is important to treat any medicine or herbal medicine as serious and not use them more than necessary, but also to not be afraid to use them smartly when needed.
      WithHope for a Cure of these diseases.

    • Anonymous
      October 6, 2008 at 6:35 am

      I agree! Each person is different and can react differently. I have heard Cellcept with many in Lupus saying that has helped them alot. If they put me on one of these drugs again I would like to try that one out. But then I might take it and have problems with it!
      I was given Lyrica and then Gabapentin. Both drugs I really don’t like the head feeling it gives me. But th Gabapentin helps more than anything else. Lyrica on the other hand did nothing. I even tried Buspar and that was a good drug too and actually helped but the Neuro gave me such a low dose that I was taking that like candy. So Gapapentin it is!