my name is Amanda, and I was diagnosed with a mild case of lupus in November of '08, after having blood work that revealed a very high ANA titer and Anti-SM. I was struggling with lasting fatigue, joint pain, and rashes of varying degrees (the butterfly rash most specifically). I have been taking Plaquenil since December.
I have an excellent Rheumy, but lately I have been doubting exactly where I am in this disease. I'm here to try and read what others have been through, or are currently going through, in hopes that it might give me a little bit more insight.
I am interested in the hollistic treatments for lupus, and hope that someday (soon!) I can stop taking the Plaquenil-the side affects and complications are not something I enjoy (does anyone?!)
Most of all, I know how hard it can be to open up and talk about an illness that can be really confusing and hard to relate to; thank you ahead of time for sharing your experiences and information.
Amanda, hi & welcome. I've actually done so well on Plaquenil, after decades of problems, that I haven't considered anything else (sorry). On Plaquenil, I'm down to "just" pain & fatigue, which beats the heck out of what I used to have. How about you?
For an excellent account of lupus in its WIDE range & all its varied manifestations: have you seen Dr. Daniel Wallace's lupus hardcover? It's in most libraries. Has a wealth of info, including some info on alternatives.
I'm sure others will chip in soon, too. I'm glad you found us & hope you become a regular. Sending best wishes, sincerely, Vee
hi amanda. I'm a 15 year survivor. I have taken plaquenil almost the entire time with no problems. i think it mostly helps keep my skin rashes calm. i also take prednisone and methotrexate although the methotrexate is relatively new. i also have lymphoma and get rituxan treatments that give me an energy kick. i can always tell when i'm due for a treatment as my fatigue becomes impossible. vee and i should get royalties from daniel wallace as one of us is always suggesting his book.
i'm not sure what holistic treatments there are for lupus. i did acupuncture for years and it seemed to help my psyche if not my body. same wirh massage. it's good they were tax write offs.
glad you have a good rheumy....many don't.
glad you found us. come often and ask wharever questions you have.
Glad that you found us here, I'm quite new on here but have been living with my DX of SLE for over 5 years, sure was glad to find this site as there is no support group in the little town that I live, and for me it is difficult to travel any distance, so this online keeps us connected rather than being mostly alone....
Like you I have only just started on Plaquenil, for me the side effects are stomach cramps and some nausea but the one thing I really dont like is the fact that my hair has started falling out more than it was before....however the plaquenil is not making me as ill as some of the other drugs that they wrote RX's for....
about going holistic, well I am sure that there are some remedies out there but I highly doubt that any proven scientific evidence of any of those remedies actually working are probably slim to none....I sure wish that there was an herbal remedy that would work better than the toxic RX's but as of yet I havent heard of any....if you hear of some please let me know...
anyways, glad to have you in the group!