Very high CPR

[Bridge1990]

Am a relatively newbie. Recent flare,. CRP was 189. Prescribed 30 mgs Pred reducing weekly. Had to return to 30 to achieve some relief, more stiffness than pain. Have had PMR since 2011 with many flares but none as bad as this . CRP is now 6 . Am currently taking 17 mgs Pred and have had a few good days but stiffness is still a problem making walking hard. Have to sit every 5 minutes. Any encouragement or advice would be so welcome. Am not sure I know how to respond so forgive me if I seem unappreciative.Have an open minded GP but useless Rheumatologist.

[PMRpro Ambassador]

Have you any symptoms of GCA? Is it just stiffness or do you have joint problems too? Who put you up to 30mg and told you to reduce weekly and by how much?

Sorry about the questions ...

[Bridge1990 in reply to PMRpro]

No symptoms of GCA .Consultant Rheumatologist prescribed 30 mgs Pred for 1 week. Then 20mgs for 1 week then15 mgs for 1 week. Had to gradually go back to 30 to achieve any relief. Now having 17mgs and had 4 great days before stiffness and pain returned to hips and thighs.

[MrsNails in reply to Bridge1990]

Bridge,

I had a Consultant who used that method - 30mg x 1week; 20mg x 1week; 15mg x 1week then taper by 1mg per month. However, it didn’t really work except when l was on 30mg/20mg & had to keep returning to 20mg......

He prescribed this when l returned from a Cruise (Norway) & l could barely put one foot in front of the other, it was my very first Major Flare, l’d had issues before at 11mg but nothing like this.

Unfortunately, this was the precursor to me stating Methotrexate 6months later which by the way worked, enabling me to get down to 7.5mg Pred.....

I had a couple of years where the PMR was making my life a total misery & l was in constant pain, more steroids weren’t really the answer as they made me very hyper, a much more exaggerated version of my personality but they would dampen down the pain until l tried to reduce them......

The Consultant considered many other possibilities rather than PMR & l had multiple blood tests, however my GP was unhappy about the effect the high dose steroids were having on me.

Ultimately, my GP sent me for an Urgent 2nd Opinion which was when l was started on Methotrexate.

I hope they can sort this out for you & soon.

Kind Regards

MrsN

[PMRpro Ambassador in reply to Bridge1990]

I think - and this is my own, non-proven, suspicion. based on a lot of observation over the years - that what you (and MrsN) describe is typical of one sort of PMR, one that is not entirely controlled by pred alone except at high doses. One of the things that should raise red flags is this difficulty in doing well at what are regarded as "PMR doses" of pred. I think there are other versions that may do OK at a bit lower doses but the patients still struggle to reduce far. DMARDs work for some but not others. It isn't mainstream - but a few experts are beginning to agree that PMR is a very complex condition - not the simple one most rheumies imagine it is. But what you do about it - I have no idea.

[Bridge1990 in reply to PMRpro]

Thank you for trying to help. Am at a loss . Always had very rapid response to Pred following previous flares but have huge reservations about using Methotrexate.

[PMRpro Ambassador in reply to Bridge1990]

Me too - I did try it but it wasn't a pleasant experience!

[Boss302Fan in reply to Bridge1990]

Wow! And I thought 5mg reductions every 4 weeks to 20mg dose. 2.5mg reductions to 10mg every 3 weeks and then 1mg reductions every 4 weeks below 10mg was bad! Also suffered 2 flares before 10mg. That was before this website and following the links and reading posts and I started pushing back. Would you believe my Rheumy wasn’t aware of the 2015 research paper? I gave him a copy, plus copies of a few others. Now he lets me do my own thing!

[nuigini]

I sympathize with your dilemma. I've had a particularly hard time reducing over 7 years of PMR. Several months ago I decided to follow the advice of PMRpro and return to the dose I had last been most comfortable, which was 17 mg and follow the DSNS plan, continuing with .5 mg drops, and repeating steps as I felt necessary. Even though I hesitated repeating steps, I did so a few times. Through all the stresses related to Covid, including having a mild case of Covid, 12 months of isolation in a remote location of Panama, recent travel back to Canada, and related stressors, I'm doing OK and currently reducing from 14 to 13.5 mg. I know it can all blow up again as I seem to have the type of PMR that can return regardless of what I do, but so far so good. Since you have an "open minded GP" perhaps this is an option worth discussing.

I don't know how my GP will react to this when I see him after 18 months, but I will not be returning to the useless rheumatologist I was referred to and am tired of battling. She's one of those that believes PMR lasts only 2 years!

[PMRpro Ambassador in reply to nuigini]

Maybe PMR does only last 2 years - but in that case they need to find a new name for what we two have because there are so many similarities.

[Bridge1990 in reply to nuigini]

Thank you so much nuigini .I can’t imagine how difficult it must have been for you but I will try to go back and start again. Certainly better than the despair I was beginning to feel.Hope you continue to live well.

[nuigini in reply to Bridge1990]

Thanks Bridge. Best of luck to you. We'll all get though this together one way or another.