I recently came across someone who said they are using Actemra and it has been the only medicine to ever get them into remission. Has anyone ever heard of this medicine being used to treat lupus? I've gone through most of the common medicines without luck: celcept, methotrexate, imuran, dapsone, prednisone, hydroxychloroquine.
Everything I have read Actemra is for rheumatoid arthritis so may not be appropriate for lupus
Yes I believe that is what its initial use was for. But I found a study "Tocilizumab (Actemra) in Systemic Lupus Erythematosus - Safety, Prelimary Efficacy, and Impact on Circulating Plasma Cells" http://http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3057537/
Maybe it is still early, but it looks like they are looking more into it.
Cytoxan is one of the only meds to calm my symptoms down. Plaquenil keeps things from getting worse but doesn’t do much for flares. I’ve never heard of Actemra being used for Lupus but it doesn’t sound like you have anything to lose. Discuss it with your doctor. Sorry I’m not more help.
I started Actemra two months ago and have already seen amazing results.
I used Actemra for my RA, but it also worked wonders for my Lupus symptoms too. Unfortunately, my liver enzymes became so elevated the doctors had to keep pulling me off of it until my liver counts were normal. Then I would get another IV of Actemra, feel awesomeness, only to have my liver count climb again. This last time it did not go down. I have been off the Actemra and any liver elevating meds for 6 months! I dropped 30 pounds, putting me at 160. I am 5’6 with a large bust. But my enzymes actually got higher with the weight loss! Ultra sound shows no tumors. I have a slighty fatty liver, but nothing extreme. I am having a liver biopsy next Wednesday to figure out what’s going on. Hopefully I can get my wonderful Actemra next month!
I had a heck of a time getting my insurance to pay for Actemra and my dr ended up changing me to a double diagnosis of RA and lupus to make it go through. Well worth the frustration - my levels have never been better! Good luck!
Successful tocilizumab (ACTREMA) and tacrolimus treatment in a patient with rheumatoid arthritis complicated by systemic lupus erythematosus
- Department of Internal Medicine I, Faculty of Medicine, Oita University, Oita, Japan
- K Maeshima, Department of Internal Medicine I, Faculty of Medicine, Oita University, 1-1 Idaigaoka, Hasama-cho, Yufu, Oita, ■■■■■■■■, Japan Email: ■■■■■■■■■■■■■■■■■■■■■
Abstract
We report a 37-year-old female of intractable rheumatoid arthritis (RA) complicated by systemic lupus erythematosus (SLE), who was successfully treated with a combination of tocilizumab (TCZ) and tacrolimus. She was diagnosed with RA when she was 21 years old, and was administered oral prednisolone, injectable gold and salazosulfapyridine, but deformity of her hands gradually developed. She developed high fever and thrombocytopenia when she was 35 years old. Renal involvement, pericarditis, positive antinuclear antibody and high level of anti-double-stranded DNA antibody were found and the patient was diagnosed with SLE. Polyarthritis and immunological abnormalities developed despite aggressive immunosuppressive therapy including high-dose corticosteroids and intravenously administered cyclophosphamide. Tacrolimus (TAC) therapy gave only partial improvement of joint symptoms. After the initiation of combination therapy with TCZ, not only was a complete remission of RA obtained, but also the serum levels of SLE markers dramatically decreased. Our report suggests the possibility that this combination therapy is effective in treating SLE as well as RA.
Source:
http://lup.sagepub.com/content/21/9/1003
Systemic lupus erythematosus
SLE is a complex multi-organ autoimmune disease of unknown etiology, affecting mainly young women. IL-6 has also been demonstrated to play an important role in the development of SLE since serum IL-6 levels are elevated in these patients, especially in the involved organs. On the basis of these findings, an open label phase I dosage escalation study of tocilizumab in SLE was carried out.
Sixteen patients with mild to moderate disease activity were assigned to receive tocilizumab, intravenously, over a period of 12 weeks. On the one hand, disease activity improved significantly in 8 out of 15 patients. On the other hand, neutropenia appeared as an emerging dose-related side effect.
Thus, if tocilizumab is to hold promise for the treatment of SLE, the optimal dosing regimen, efficacy and safety remain to be defined in this population.
A doctor at ohsu put my sister on a.m.p floracel and as long as she stays on it she is in remission. Take care, Jeff
Thank you very much all of you for your wonderful information! I really appreciate it!