Change in the PMR journey

[Darcy2000]

I have had PMR Dor a year now and have followed the prednisone regimen and had monthly blood work to check on CRP and ESR. Everything as been going so well and down to 11 mg . All of a sudden Subtle pain in my jaw and temple and general feeling of malaise with a low grade fever. Could not reach my RHEUMY so my GP sent me for blood work .CRP now is 69 from 11 and ESR which has never been elevated is 33. What else could this be except GCA. we have a big trip to Hawaii in 3 weeks and obviously my sight is priority # 1 but how quickly would they determine that this is GCA and wonder if they would schedule a biopsy asap. My body actually has been feeling really well except for my head. Can GCA come on anytime during the PMR journey?

[HeronNS]

If you didn't already have PMR you might just think you were coming down with the flu. Obviously everything has to be done to rule out GCA, but it may not be inevitable that this is what it is. Keep your hopes up! Fingers crossed for you. 🤞

[LIVEORDIEHEREIAM]

When I was put on 15 mg pred at the time of my diagnosis of both PMR & GCA, my GP said, "That dosage will stop the progression of both conditions, so you are safe."

WRONG!

Only lost 20% of my eyesight in one eye, so it could have been worse.

New Dr. sees things differently!

Please do not wait for the official diagnosis if you see bright flashes and/or "pixelated" distorted vision! I would take the high dose and go to the emergency!

Hoping that you do not have GCA! Good luck!

[PMRpro Ambassador]

Yes, I'm afraid that PMR can progress to GCA at any time of the journey and if the pred dose is low enough to not combat the inflammation then you will have GCA symptoms.

All the signs and symptoms are very suggestive of GCA and since you have been on pred for a long time, albeit at a moderate dose, it is questionable whether it is worth them doing a biopsy. Even if a biopsy is negative that doesn't mean it isn't GCA and in the presence of symptoms they often make the decision to treat for GCA. I consider it would be unethical not to do so.

So GP Monday - and if you have any visual symptoms at all or the jaw pain worsens off to the ED!

[yourpharmacist]

I am sorry that you are having this set back- as you know it is very hard to get a "good diagnosis" especially if you do to have all typical symptoms. I did not- It took 3 months to get GCA diagnosis and that was after 5 days in hospital with confirmation of Temporal artery biopsy. Another challenge is you can get a positive Giant cell biopsy on one artery and not the other- and they usually only do one side for the biopsy. I have symptoms of PMR but my doctor does not say I have that- Most important is to get back to the rheumatologist and he or she will probably increase your prednisone for short time to stop that inflammation. My sed rates at diagnosis 5 years ago were over 100 and recently 69 and so we increased prednisone and slowly tapered down. On prednisone 2 mg now and sed rate finally in normal range- will remain on that dosage for awhile and maybe forever to ensure inflammation under control. My doctor immediately increases prednisone-It is a very frustrating disease and symptoms can be and are debilitating and hard to explain to those around us when you can see anything and there are no definite causes identified. Please take care and continue to ask questions. Maybe someday we will find the answers.