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Hi Teri. I’m going through a nightmare right now. I’ve had a rheumatologist for 5 years. He had me on 10 mg cortisone/ day because my level was .07. I had been great for years and then in Jan I started with shoulder, arm back pain, aside from my usual aches. It got worse and as I tried to find a new rheumatoid dr ( my present Dr didn’t want to do anything)
She said my levels are fine, go to pain management. ( she refused to give me any medicine or refill my cortisone, even though she knew I was going to run out. Welp, I ran out Aug 28th and have been on a roller coaster. 6 doctors, all denied treatment, patient first wouldn’t even see me, I did finally get a prednisone pack and a 30 day supply from Telle doc. I also went to the Dr, and was told the same thing….they also called my old rheumatoid dr and his office told them I was never a patient there. 😫
I saw another Dr in that practice on Thursday as an emergency because I complained to administrators. That dr also did blood and said my levels are fine and I need a psychiatrist it’s in my head. 😳🙄 I cried the entire way home thinking I’m going nuts. She did refill a 60 count prednisone . I feel great after just 1 day.
I’m now scheduling with Penn Medicine. They have great drs that specialize in PMR. I’m scared. The headaches are so bad when I have them. My head is going to explode.
I hope you are feeling well today 😃 thank you for responding and caring. 🤗
Replies to "Hi Teri. I’m going through a nightmare right now. I’ve had a rheumatologist for 5 years...."
Hi, dmoonchild, Sounds totally awful what you're going through. I certainly hope you can get some help soon. My concern for you, is the symptoms that sound a lot like GCA is lurking. You need to do a bit of research on the symptoms of that - Giant Cell Arteritis. That would be the headaches. The PMR people would know about that, but you could get into a situation where you can't wait for them. If you start to have a loss of vision in one eye, you MUST get yourself to an emergency room or urgent care facility immediately. Call them first, as they may instruct you to take a large dose of prednisone immediately before you get to them. If you don't do this, you can permanently lose the sight in that eye, and I've read somewhere, that if that happens, there is a fifty percent chance of losing the vision in the other eye as well. But none of the above will happen if you take action quickly enough, hopefully. But headaches are not usually a PMR symptom, and it is a GCA symptom, so this is why I'm telling you this. Good luck to you. Please keep us updated.
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I hope you see the doctors at Penn Medicine soon, that they are helpful and caring.