New to PMR

[SallyLeon]

Good morning! I am a retired 64yr old female born in the U.K. but residing in the U.S. I have been relatively healthy until 2 months ago when I started experiencing extreme pain in my shoulders and arms, hips, and to a lesser degree my neck. After a month I was able to see my GP who had me go for x-rays and blood tests. X-rays normal, ESR=28 and CRP=23. Negative for RA and all other results normal. In my follow up appt the GP stated she did not know what was causing the pain so I asked about the possibility of PMR, and she said a rheumatologist would have to make that diagnosis. She put me on a short term trial of prednisone at 60mg day for 2 days, then 50mg for 2 days, etc etc until they were done at 12 days. A referral was made to rheumi but I still don't have an appt yet.

Based on my readings on this wonderful site, I did not start taking the prednisone per the GP's prescription. I understand that a lower dose of prednisone could effectively rule PMR out/in, so I started with 20mg per day. I felt an immediate difference within hours, but not total pain relief. I have now been taking it for 4 days and still have pain and stiffness in my shoulders and arms, and it is about 70-75% resolved. I can now brush my hair, go up and down stairs easily, and reach overhead, albeit with some pain. I also don't feel so run down.

My question is whether I should increase the prednisone to 25mg or start with an increase to 22.5mg to see if I can get better resolution of my shoulder and arm pain, or possibly not increase it all and give it more time?

Thank you for all the information provided on this site. My GP seemed a little clueless about PMR, although at least she has heard of it!.

(Sorry for the length of this post!)

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

You may find 2Omg is enough so give it a few more days- it doesn’t work overnight for everyone. But after another 3 -4 days, might be worth trying 22.5mg if it’s not any better- but you do need to remember that just because you feel better - you still have underlying PMR - so don’t assume life is back to normal.

Do you have any idea how long you may have to wait for Rheumy appointment?

You might like to have a look at this as well- healthunlocked.com/pmrgcauk...

[SallyLeon in reply to DorsetLady]

Thank you! I did get a rather quick tele-health rheumi appt, but they cancelled it because they claimed my GP's office had not faxed over the medical records. They have since been faxed, but I have not received a call to reschedule the tele-health appt although I left them a message yesterday. I do have an in-person rheumi appt for October 7th, but I'm pushing for at least a tele-health appt sooner so I can talk to the rheumi about a possible PMR diagnosis.

[PMRpro Ambassador]

70-75% global improvement within days to a moderate dose (15-20mg) is what they usually look for. I had about that in under 6 hours with 15mg - but that was the stiffness above all and muscle pain. The hand and foot pain took a lot longer and so did the hips, maybe 2 or 3 months. My shoulders were never particularly painful as such, that was stiffness that prevented me moving easily and in certain directions.

It's difficult to say without knowing how receptive your rheumy may be to patient reporting - I'm sure you realise her approach of mega-dose pred isn't based on empirical evidence - a lot of things would respond to a dose like that. PCPs in the US seem very unwilling to take responsibility for a lot of things - what DO they see as their remit?

[SallyLeon in reply to PMRpro]

I told my pcp that I was concerned that 60 mg of prednisone was a high dose, and her response was that it is the standard starting maximum dose! I wasn't comfortable at all with taking that much if it was unnecessary, and I was concerned that there would be no way to determine if what I have is actually PMR or something else if I took that much.

I'm still waiting to hear back from the rheumi to reschedule my tele-health appt so I'll be calling them again on Monday.

Thank you for the information!

[HeronNS in reply to SallyLeon]

It's a standard maximum starting dose for GCA, not PMR! If you weren't presenting with GCA symptoms she was making a mistake. The high dose is when your eyesight may be at risk. Looks like you've learned the hard way that doing so much when you felt better does tend to slow down the effects of pred. Keep active, but pace yourself. My rule of thumb has been, wherever possible, for every period of activity take a similar time of rest. And recognise that even things which are pleasant may carry a certain amount of stress and you'll need recovery time from those things too. Like in the good old days when we could lunch with friends without fear of covid. Those two hours would require a couple of hours of recovery time

[PMRpro Ambassador in reply to SallyLeon]

For GCA - yes. NOT for PMR and all she had to do was google it!!!! Maybe it is as well they won;t take responsibility and send people to specialists!

[SnazzyD]

I’m glad you were clued up from the outset. Make sure you are going easy though, as PMR muscles and after a bit, Pred muscles aren’t as robust and resent over doing it. Over doing it is, of course, an individual thing, but for many it merely means going back to normal.

[SallyLeon in reply to SnazzyD]

I am feeling so much better 4 days in, but have noticed that if I try to cram too much into a day I hit a wall and have to rest. It's so much better than during the last two months when I was in such intense pain and felt so run down. Fortunately I found this site which gave me hope that things can and will improve (and they have!)

[SnazzyD in reply to SallyLeon]

That sounds about right. Just listen to your body at all times but be aware that Pred can make you feel like you have more go than you really have.