Hi Duffy,
Since the only med you mention is prednisone, I'm assuming that you're not taking any immunosuppressant. Your rheumatologist will probably put you on something.
Usually, a beginning immunosuppressant is pretty strong to get the disease into remission. If your doc treats you traditionally, you'll probably go on either cyclophosphamide (cytoxan) or methotrexate for a few months. These drugs are cytotoxins - chemotherapy drugs used to kill the abnormal white blood cells that are attacking your body. You may also get infusions of rituximab (a biologic originally developed to combat non-Hodgkin's lymphoma) that accomplishes the same thing with fewer side effects. These drugs do not act as quickly as prednisone. You'll probably start feeling noticeably better within a couple of weeks on cytoxan or methotrexate, but it will take 4-8 weeks for the full effects of rituximab to kick in. Once in remission, you'll probably go on a maintenance dose of something - could be methotrexate, cellcept (mofetil), or azathioprine (immuran). You may also get periodic infusions of rituximab as maintenance therapy. One note about rituximab - it's frightfully expensive. List price for the two infusions I had in October '13 was almost US$40,000. Fortunately, I have good insurance, and my copay was only US$40. My doctor had to get my insurance company's permission for this treatment.
You may see your prednisone dosage adjusted back to the dosage where you felt good. You'll hold there for a while (few weeks to few months) until you become stable. Then, you should begin a gradual taper off. The danger of tapering too fast is that your adrenal glands may have shut down and will not produce enough cortisol (the body's equivalent of prednisone) and you'll flare again. As an example, it's taken 14 months to taper me down from 60 mg of prednisone/daily to 3 mg. I've felt good all along the way.
Drug therapy with this disease is a balancing act. Your doc is trying to maintain a balance between suppressing your immune system enough to keep it from attacking your body while still maintaining some degree of resistance to other bugs.
There is also the matter of side effects. You should make sure you fully understand what side effects may manifest with different drugs and follow your doc's instructions for dosing and other preventive measures. As examples, if you're on cytoxan, keep well hydrated and don't delay urinating so the metabolites of cytoxan don't mess up your bladder too much. With methotrexate, don't consume alcohol (and if you do, use extreme modification). I have one or two alcoholic drinks once every 6-8 weeks -- usually a glass of wine or a beer or two.
Having said all of the above, I'll give you the advice that the doc who diagnosed me gave: Take your meds as directed, and live your life to the fullest extent possible. It is possible to get back to close to your state of health before the disease. I'm lucky in that regard. Others may have to adapt to a "new normal" that involves a lifestyle that is restricted or altered to some degree.
Hope this gives you some idea of what your future may hold. Good luck, and don't be afraid to ask questions or ask for advice.
Last edited by Pete; 12-30-2014 at 05:17 PM.
Pete
dx 1/11
"Every day is a good day. Some are better than others." - unknown
"Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD
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