Ups and downs with lupus

Ive been on prednisone since my diagnosis 25 years ago. Its always been my miracle med. I had never had any problems until three years ago. My complications were due to prolonged use of it. I was never able to use Plaquanil. I had 5 surgerys on my right ankle with my Achilles tendon being exposed due to deterioration of the flesh surrounding it. I had a wonderful Surgeon and Podiatrist who saved my foot from amputation. Im now in the process of tapering completely off of the Prednisone,which Im in my second year of tapering. I just got down to 5mg from 65mg two years ago. Im also taking Azathioprine daily and Ibuprofin when needed which is almost daily. I also get tired of dealing with Lupus and a boat load of other meds for other medical diagnoses. I have to stay focuses, stay positive, and stay strong. One thing Ive learned to do is stretch exercises all the time and plenty of fluids.

Thanks Ann, This is the longest taper ever. I was told that my body had become addicted to the steroid and at the same time I had built an immunity to it and that it was no longer doing what it was suppose to do. I still cant believe that I have actually taken the same medication for over 20 years. They say time flys when your having fun. A lot of myt problems now could be due to the tapering and transition from the Prednisone to the Azathrioprine. And also wondering if the Azathrioprine is working. Ive never taken anything else for my Lupus. Thanks again Ann

Wishing you the best with the new medicines and your taper!

Hi Ann, that info is so helpful in me understanding what my body is going through. Ive been thinking lately that my rheumatologist doesnt tell/explain enough to me. My fault for not asking enough questions. Ive seriously been considering finding someone else. I know Ive been prolonging doing so feeling like its so late into my diagnosis and everytime I think about medical records I get sick. And I know thats stupid because its never too late and a ton of medical records shouldnt matter when it comes to my health.

Thanks a lot. Ive added positive support to the treatment process. Thanks again.
Ballerina8876 said:

Wishing you the best with the new medicines and your taper!

I was on steroids pretty much for about 20 years It is important for your docs to know of your past use so that during times of stress (infection, surgery) they can temporarily support your adrenals For every surgery I undergo they start intravenous steroids during the surgery itself and then maintain it for several days and I do fine. One surgery I had when I was off steroids for more than 10 years and still got the steroid support Important for you to relay this info to all docs in your future including visits to the ER