Is everyone here diagnosed with PMR seeing a rheumatologist?

I'm a three-year....almost there gal too. Like you, I'm so grateful for the improvement over how I felt in the beginning; it makes it a bit more tolerable. It helps me so much to be a part of a group like this and know I certainly am not alone!💞

Personally, I do not care what kind of doctor can take care of someone with GCA or PMR. My problem is that most doctors do not have enough knowledge about GCA. PMR seems to be more popular!! I have a wonderful rheumatologist but he admits that he does not see many patients with GCA.

I am not. My PMC diagnosed it and he has me come back every four months, as I wean myself off Prednisone, to have a blood test to check my inflammation levels.

I understand your frustration. I have a good friend who is a primary care doc so I get to hear what the medical community is going through. My suggestion is that if you can find a "stand alone" MD or Rheumatologist, (some GPs are very knowlegable), they have rejected the the idea of seeing 20 patients a day to make money for their conglomerate. They spend more time with their patients but have to really "work the system" to make ends meet. But as they are their own master, they get to decide. I'm lucky here, as we have a large medical community. But odds are, you will still have to wait for an appointment.

There is no doubt PMR is more common. I know my primary care didn't have a clue about GCA...or long term prednisone either. Have you looked at HealthUnlocked.com in the UK under the PMR/GCA group? Since they have national health they have done more research into GCA and fast-track any patient with GCA symptoms. There are also some great Zoom support groups you can join also and talk to people who have been living with it...and doing a great job...for years. Private message me if you are interested. You sure won't feel lonely there!💞

Thanks for the info. Love Healthunlocked.com. Been involved with them for a couple of years.

I was younger...haha...when I was diagnosed so I'm Grammy80 on HealthUnlocked...it is a very informative group I feel. I'm happy to have just found this support group also.💞

I am not. I am still seeing my primary care physician who diagnosed it last fall.

I began with 13 mg daily of Prednisone, reduced it 1 mg a month, am presently down to 3 mg.

All was going well until I got pain in the Achilles tendon of the right foot and a week later the same thing in the left foot. The primary care physician diagnosed it as bilateral Achilles tendonitis, but I am skeptical. What's the chance of getting AT in both feet within a week? The only exercise I do that involves my legs is use of a rowing machine and that puts about zero stress on the AT. My physical therapist recalled during her training being told that Prednisone could be really hard on the tendons.

Suspecting that the onset of the AT was a result of the dropping of the Pred. dosage, I called the primary care physician and asked if I could up it back to 10 mg and see what happened and he blessed that.

Ten days later, absolutely no improvement...and that's when the PT gal made her observation. Since dropping the dosage to 3mg about a week ago, I am seeing some modest improvement in the AT discomfort.

I'm glad to hear you are having some improvement!! I've been on prednisone for three years now, and it certainly leaves its mark, but I'd never heard of it affecting the AT... It is an amazing medicine, and like most people...it is a trade-off, and we accept and tolerate the side effects.
I'm sure that is darn sore. Your PT sounds inciteful, and I'm guessing the PT is helping.
I started at 80 mg plus Actemra three years ago because I had lost sight in one eye, and the mission was to save the other. Mission accomplished with the help of a neuro-opthalmologist.
I'm now at three mg per day and grateful!! Keep in touch!💞

My Dr sent me to an internal medicine specialist,probably because I’ll wait a lifetime to see a rheumatologist