PMR/Suspected GCA and a flair?

[Pamk1949]

Hello, I’ve had PMR ( treated) for 21 months. 3 days after that diagnosis I had several Amaurosis Fugax incidents, so I was put on 100 mg prednisone. Since then with different doctors (I relocated) it has been suggested that I never had GCA, but it must be treated as such. Now I have reduced to 3 mg (tapering 1/2 mg every 3 weeks).

The last few weeks at 3mg Ive had stiffness in shoulders and backs of my knees. I’ve never had a flair. I’ve been waiting to see if maybe I overdid it walking but it’s not going away. Ive just read “V1a4’s” post about going up more than the last dose to zap the inflammation, then tapering back to above my threshold of 3, sounds interesting. Would you suggest that, or should I get an ESR/CRP blood test before I go up to maybe 5?

I probably should know the answers to my question, as I’ve been on this site daily for over a year, But maybe my new doctor’s doubts about GCA has had me convinced that I never had GCA.

I would appreciate any advice. Thank you PMR/GCA

[DorsetLady PMRGCAuk volunteer]

Go back up to at least 5mg at see what happens. It may not be enough if you’ve left it for 3 weeks. If it’s not, then maybe try 7. 5 or 8mg. If that settles it, don’t drop straight back down to 3mg as that patently isn’t enough.

If 5mg sorts it out, stay for at least a couple of weeks, 4 would be better then reduce by 0.5mg a time, and on a monthly basis, not every three weeks.

If you have to go up to 7.5 or 8mg then drop back down to 5mg in one go, but repeat above from there on!

Even if you “only” have PMR getting to 3mg in 18months or so is very quick. You need to slow down now!

By the way, it’s a flare, not flair. (Different meaning)

[Pamk1949 in reply to DorsetLady]

Hello DorsetLady, thanks very much. That’s what I was afraid of, that I’ve let it go too long, and tried to stick it out. I’ll try 5 tomorrow, should I see some results by the next day? I guess I learned my lesson. Will go up more if I have to, like you’ve said. This is the best forum!!

[DorsetLady PMRGCAuk volunteer in reply to Pamk1949]

You may find a difference straight away, but certainly with 2 or 3 days.

As you are in single figures really there is no rush to get down - you need what you need!

Good luck.

[PMRpro Ambassador]

If it were me I would try a bit more pred for a few days and see if the "maybe PMR" symptoms improve. The usual recommendation from top experts is to add 5mg to where a flare happened for up to a week - when if it hasn't made a difference you can drop back to the previous dose or 1mg above straight away without tapering.

It does make me angry when doctors question a diagnosis made by someone else on perfectly acceptable symptoms without ever having seen the patient at the time. If you had repeated amaurosis fugax episodes you either had GCA or you had something else which I imagine they checked for - stroke being the most likely, using CT. Pred doesn't manage stroke, it does manage GCA and they avoided the potential risk of visual loss. They don't use 100mg pred without having very good suspicions and they would have stopped it immediately had they found any other reason for your amaurosis fugax. If only they could find a reliable marker for GCA.

[Pamk1949 in reply to PMRpro]

Yes, had the stoke workup —all was fine. Symptoms were all the usual, weight loss, jaw, sensitive scalp , tongue swelling, & more. I’ve done so well this past year lowering prednisone —maybe I wanted to believe I really didn’t have GCA, and tapered too fast. So I will increase starting tomorrow . My new provider did ask for the biopsy slides, and sent them for further tests, but nothing was revealed.

Thanking you and DorsetLady for your trusted and professional advice!!

[PMRpro Ambassador in reply to Pamk1949]

If there was nothing there in the first place - looking at the slides again wasn't going to change anything!! There are many reasons for not finding the giant cells - including the GCA wasn't in that bit of temporal artery or it was a bad procedure before it got to the histopathology lab. And since you had repeated amaurosis fugax it was far more likely the greatest inflammation was in the occipital region, at the back of the head, in the area where the blood supply to the optic nerve is located, or branching off the carotid somewhere else.

And the second doctor could charge the insurers for checking someone else's work ...

[Pamk1949 in reply to PMRpro]

You’re right. It was more than a year since the first biopsy. Never had any hopes for that second look, glad insurance covered it, and not me!