Over cautious Rheumatologist?

[flygirl65]

I was recently diagnosed with PMR in June 2022. After ER visit and one dose of pred at 60 then 2 days at 40 I have been on 20 mg since. Had first appt with Rheumatologist July 28. We decided to try to taper so I went to 15mg. Pain came back within days. Also have very mild headaches that come and go but nothing bad and not in temporal joints or jaw. My right eye sees flutters, that’s happened 3 times. Rhuemy wanted to up Pred to 40mg just in case of GCA and I was reluctant to do so. He also recommended a biopsy of temporal artery. This all seems like overkill to me based on the fact I was doing well on 20 mg of prednisone. I asked him if I could go back to 20 for 3 weeks and then try tapering slower eg 20 to 17.5 for theee weeks then 15 etc. He agreed. He did say to get an eye exam asap. I was just wondering how long people stay at higher doses of prednisone and when you know it’s okay to taper and if eye exams show any signs of GCA? This is all so ambivalent and having all this expertise is so valuable to me. Thanks

[DorsetLady PMRGCAuk volunteer]

Hi. And welcome,

If you were started on 60mg -there was obviously something that made the ER team suspect GCA rather than just PMR. I would guess what they saw or thought they saw was passed onto Rheumy.

The drop from 20mg to 15mg was obviously too much - usual is 20- 17.5-15. Which has now been agreed -good.

In view of the headaches which could be PMR or GCA, I can understand where Rheumy is coming from -so do take his advice to get eyes checked especially the fluttering…and what exactly do you mean by that -any loss of sight , even fleetingly?

..and better to have a Rheumy that is over cautious than one who doesn’t take the situation seriously enough .

[flygirl65 in reply to DorsetLady]

I am very grateful just so overwhelmed at all the drugs and scary eye possibilities. Thank you all so much for your invaluable insights!

[DorsetLady PMRGCAuk volunteer in reply to flygirl65]

Yes it is overwhelming at the beginning

Maybe have a look at a couple of posts -first one on general info -and the other is my story - may help put things into perspective-

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[piglette]

As DorsetLady says you are better off with a careful rheumatologist and yours does seem to care. You do want someone like that when there is the possibility with GCA of losing your sight totally.

[flygirl65 in reply to piglette]

Yes the idea of losing my eyesight is terrifying. Thank you.

[PMRpro Ambassador]

I really doubt there is a lot of point doing a TAB after that long on pred above 20mg - except to line someone's pocket (not yours!).

It is probably safe to reduce the dose when you can do it and have no worsening symptoms. If it were me I might be happy at 20mg for a bit longer - but definitely no more 5mg drops!!!! 1mg is fine if that is what you can manage!!!!

[Sharitone]

That was a big drop - 25% of your dose! It's usual to go to 17.5 next. Below that, I could never manage more than 1mg at a time. The good thing about reducing slowly is that it has a better chance of succeeding, so you don't have the enormous disappointment of having to increase again. good luck!