Lupus Support Group
Lupus is an auto-immune disease in which the immune system cannot distinguish between threats (like viruses and bacteria), and healthy cells and tissue. As a result, the body produces antibodies that inflict cell damage, most commonly targeting joints, skin, kidneys and the nervous system. Join the group and find support for coping with lupus.
Hello...anybody out there taking Neoral....Just visited my Rheumatologist today and though my test results are ok, I am flaring almost constantly - lots of joint pain, skin no so great (malar rash just looks fabulous!) etc. etc. This was despite upping my dose of Plaquenil.
He has suggested I take Neoral (Cyclosporin) in conjunction with the Plaquenil and has explained the risks etc. I am to get bloods done tomorrow, then start the Neoral, have weekly blood pressure testing and do a blood test once per month. Then I am to see him first week in January, unless of course there are any problems. I cannot take Prednisone (messes with my arrhythmia) and he said I could take Methotrexate, but said this Cyclosporin would be a better bet (and I can have a glass of wine from time to time).
Your input would be appreciated (as always)....I've read all the guff from the drug company and took on board the Rheum's comments, but there's nothing better than running it past you guys. Anyway, would appreciate your input.
He has suggested I take Neoral (Cyclosporin) in conjunction with the Plaquenil and has explained the risks etc. I am to get bloods done tomorrow, then start the Neoral, have weekly blood pressure testing and do a blood test once per month. Then I am to see him first week in January, unless of course there are any problems. I cannot take Prednisone (messes with my arrhythmia) and he said I could take Methotrexate, but said this Cyclosporin would be a better bet (and I can have a glass of wine from time to time).
Your input would be appreciated (as always)....I've read all the guff from the drug company and took on board the Rheum's comments, but there's nothing better than running it past you guys. Anyway, would appreciate your input.
Im curious why he thinks cyclosporin would be better then MTX. You can have a glass of wine from time to time with the MTX (I have heard). Have you googled both to see what the side effects are from both? Which one sounds less toxic? The best info is from us who have taken these drugs. I am on MTX and really have done very well with it. It hasnt caused me any bad side effects and I have been on it for 8 months and my liver is fine. Since everyone reacts differently to all meds, the best way to know how neoral affects you is to give it a try. Just know that if you have a bad reaction to it, there is another drug out there you can use as a back up. I'd love to know what others have experienced taking this drug as well. Please let me know of any info you get on this subject.
Im sorry you are flaring....It stinks that you have to start a new med to control your lupus...But, hopefully you will start to feel better soon after you start the new meds.
hugs