Do I really have PMR?

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. 🤗

Gosh, DMoonchild, what a nightmare you have had. No responsible doctor should let you run out of pred after you have been on it for awhile regardless of the reason. I certainly hope you find real help where you are going. And then share what you learn with us. There seems to be a surplus of doctors out there who don't know much about this disease. I know we all hope for the best for you. Hang in there.

I have read that about 20% of patients do not show an initial alteration in the CRP and ESR levels and when we are on Prednisone they are not a reliable indication of disease activity.

I hope you see the doctors at Penn Medicine soon, that they are helpful and caring.

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.

That exact thing happened last Saturday. I went to the ER. The ( very arrogant) dr. Was the worst ever. He told me I was being rude and turned his back and walked out. They said they called my rheumatoid dr who said I was not. Patient. I left the ER with nothing but a worse headache and crying. The security guard was astonished at the treatment I received.
I’ll go to a different ER if this happens again, but my blood work keeps coming back normal, if not low.
This pain is not in our heads. I’ve been through therapy. Yes, I’m certified nuts 🤪😂 ( aren’t we all ) but to suggest that this pain is not real is just ridiculous.
How are feeling this week? I do hope you are enjoying your weekend. Thank you so much for your advice and concern. Sometimes it feels like no one cares. 😟 When Drs give up looking, where do we turn? The internet. I’m so happy I found this supportive web site. 🥰

I’ve had that exact experience! I did lose vision in my left eye eye 3 times. Each time it lasted for about 1/2 hour.
My eye doctor sent me to the ER with his notes. He wanted me to be given high doses of prednisone.
I went to the ER. I gave them his report etc. They didn’t do anything but a CT. Actually, they kept me overnight but didn’t give me prednisone for 6 hours after I got there.
All my tests were normal including an MRI even though I had all the symptoms of GCA. Headache, sore scalp, face pain etc.
They sent me home. The hospital neurologist said he was unsure if he would recommend a biopsy of my temporal artery. (he should have)…
I still have all the symptoms of GCA. Not one test including the biopsy I did have shows it. Everything is “normal”.
My Rheumatologist at Mayo Scottsdale has ordered MRIs specific for arteries. Hopefully it will help.
Currently, I’m on 35mg prednisone. I can not lower the dose without feeling very sick.
Very frustrating!

Hello SueEllen 😃 wow, I can’t believe this is happening to you too. Hugs 🤗
Hopefully we will be ok until properly diagnosed. Have you gone to an endocrinologist? I was advised to see them too.

@dmoonchild I waited six weeks for proper treatment because my blood work is normal. It turns out that is true for about 20% of us. The other way you diagnose PMR is to prescribe prednisone and if it works to eliminate pain, you've got it.

No, I see a local Rheumatologist and she is consulting with the rheumatologist at Mayo.

As you know, GCA/PMR are forms of Vasculitis.
I also have another form of Vasculitis. My Polyarteritis Nodosa was diagnosed in 2015 via biopsy. It’s a very rare disease. So, my arteries are inflamed already. However, the GCA symptoms are very different.
I don’t know what an endocrinologist would be helpful for. This is an autoimmune disease therefore a rheumatologist is the specialist.

My Polyarteritis Nodosa is so rare I have had to teach my health care professionals about it because they have never seen it before! Now, that’s frustrating!

There is a Vasculitis Foundation you can check out for more information.

Have a great day! 🌻