What to do
Hello all. New here. Lots of good info. I am 44. Was just diagnosed in November. Dr wondered how I had gone so long undiagnosed. I have always had symptoms . Dr said severe damage already done. I was diagnosed in the hospital. I was in for a very bad case of osteomyelitis. The ra Dr would not treat due to that. I have had 12 weeks iv antibiotics and the stuff seems to be gone. But my ra Dr keeps moving my appts. Can't see him. I was already on 20 mg of Prednisone a day for Addison disease. Dr decreased me to 5. I got so weak and my morphine for pain would not work. So it dawned on me to increase my pred. And magically I have improved. I can walk again. Saw my primary, I told him I was up to 40 mg a day. Some days I need a bigger dose. I know I can't stay on that high dose, but I need to work and live. What in the world do I do. I can't find any body to treat me.
How frustrating! 40mg prednisone is a fairly high dose for RA, I am unsure for Addisons. Do you see a Endocrinologist for your Addisons? Can they or your primary reach out directly to Rheum? Are there other Rheumatologists in your area? Maybe see if the Rheum's office has a waiting list to move your appointment up? Or, call every few days to see if an appointment opens up? It can be such an ordeal to get into a Rheumatologist - there is such a shortage of them. I understand not wanting to suppress your immune system during osteomyelitis, but if it's resolved hopefully you can start RA treatment soon! Sorry, more questions than advice. Again, I Hope you can find help, soon! Jo (Moderator) Thanks so much. Usually 5 mg is enough for Addison's. But even long term use of higher doses do not bother me a lot.its a question of quality of life.. something is not right with the ra Dr I have. Last two appts I arrived to find the Dr had changed the appt with no notice and was not there or just changed before I got there. It's 2 hours drive. I asked my primary about another. Only my so called Dr and 1 more whiskey not taking patients. He is supposed to be checking on it and and endo. Never had luck with endos. It just so frustrating. This stuff runs in my family big big time. I wish the frs had caught it when I was younger. I have been on strong pain meds 25 years. Had I not had a big flare up that took the use of several fingers and both wrists for several days in the hospital I would not if been diagnosed. The infection Dr noticed it and that my wrists had deformed no Dr would of been consulted. I told that Dr it's nothing new for me. The Dr was very concerned then. Why I can't get anything done is beyond me.
I hope you can find someone new,
, even if you have to travel another hour or so. We have some members who fly to appointments because it is that important to have a good rheumatologist. If travel is an issue, you might be able to work something out with a new doctor where you get labs and imaging done locally and do virtual appointments whenever possible. It really sounds like you need better care and you definitely deserve it. Keep us posted if you are comfortable doing so. We'll be thinking of you. - Lori (Team Member)
I got one the 21st I think it was
Lady who made it was like you have missed every appt. I explained that they canceled every one. I hope I am going to finally get relief.I am glad you set the record straight and that you finally have an appointment,
. I hope you finally get some relief. Gentle hugs. - Lori (Team Member)
