PMR -Lancet Summary

[piglette]

The Lancet has a brief summary on PMR this week which may be of interest.

thelancet.com/journals/lanc...

[Bcol]

Seems a reasonable summary, apart from the being over 50 years old part. Couldn't read the whole thing as I don't have access to the Lancet.

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

Agree -but one if not two of the original contributors mentioned are trying to sort out the “age” thing…

Let’s hope that TCZ and sarilumab are not scuppered by cost.

You can join Lancet free of charge -but still can’t read some articles…

[Bcol in reply to DorsetLady]

Ta, I'll get that sorted.

[Bcol in reply to DorsetLady]

Didn't seem to have a free option, ranged from $39 to £204.00

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

Okay perhaps things have changed since I joined….I can read some, but not all of the articles…

Sorry to mislead you 🤦🏻‍♀️

[Bcol in reply to DorsetLady]

Not a problem

[Greensleeves]

Thank you P , I don’t want to have been taking Pred for over 10 years , but feel safer taking those than adding steroid sparers, apart from those that PMRPRO takes .

Feel sure I’ll get to 5mg after Christmas and this heartache has lessened and recovered from Covid . The hospital could see my mum had GCA from specialist scans . Too late by then.

Thank you for sharing this.

[Rachmaninov2]

Thank you piglette.

[SheffieldJane]

It would be interesting to read it all and the other relevant articles. Thanks for sharing!

[LucilleG]

From the article:

"Relapses

Relapse is defined as an increase in polymyalgia rheumatica activity, usually occurring during glucocorticoid tapering or discontinuation, and resulting in re-escalation of therapy. When symptoms recur and a flare is suspected, detailed clinical evaluation is necessary to exclude other conditions or reappearance of chronic pain due to comorbidities (ie, osteoarthritis) and masked by glucocorticoids. In observational studies, 43% of people with polymyalgia rheumatica relapsed at least once within the first year of diagnosis.95 Those who relapsed during the first 6 months were more likely to require long-term treatment beyond 2 years.... Fast glucocorticoid tapering might also be associated with relapses."

"...detailed clinical evaluation is necessary to exclude other conditions or reappearance of chronic pain due to comorbidities (ie, osteoarthritis) and masked by glucocorticoids."

This sentence has caused me issues with both my rheumatologist and GP. I understand it can happen (i.e. masking of other issues), but what I've found with both of them is that since I've been on prednisone since end of May 2021, that if I start to have repeat symptoms when tapering, it must be something else. I had a terrible appointment with my rheumie a few months ago...they once again told me the symptoms were most likely psychological. At one point, they said that prednisone doesn't help with pain and I told them that I know that, it deals with inflammation which causes the pain. They then said I must have fibromyalgia. I then said that prednisone doesn't help the pain of fibromyalgia, but it does for PMR. There were other terrible things that they said, but I haven't been able to even write about it here until now.

I then spoke with a GP who has been wonderful. But as soon as I said that I'd like them to work with me ( as opposed to the rheumie), they said that my neck niggles and pounding my head to the rhythm of my heart (the first symptoms I had in early January 2021), is most likely something else. They then said that the pred could be masking something else because I am older then when first diagnosed, which I agreed that it was possible, but not probable, as the symptoms were exactly like my original PMR symptoms. They then said that maybe I could be off of the pred by Christmas...I just started the DSNS taper today to 4.0 from 4.5, so I might be down to 3.0 by the new year if I'm lucky! They also said the prednisone can help fibromyalgia. Sigh. The one good thing this GP has said is they are not in charge of my body and will listen to me and work with me on the taper, even though they would like me to get lower more quickly.

The other thing the GP said was that so many people get stuck at 5.0 mg of pred...but it's like they think that it can't be the original diagnosis! Because it's over the 2-year timeframe, I must have something else. Argh.

[DorsetLady PMRGCAuk volunteer in reply to LucilleG]

I do wish they get rid of the 2 years scenario- yes some do get through in that timeframe, but there are a heck of a lot of patients that don’t…. One renowned Rheumy in UK is trying to change that, but I fear she is swimming against the tide… plus her name is associated with article…

As for -Fast glucocorticoid tapering might also be associated with relapses." Not so much “might” but certainly is!

Getting stuck at 5mg… just as likely to be adrenals as PMR.

Do wish there was more dialogue with patients, or perhaps that should be more notice taken of the dialogue with patients….

[PMRpro Ambassador in reply to LucilleG]

My suspicion for your tinnitus and stuff is borderline GCA affecting the 8th cranial nerve ...

healthunlocked.com/pmrgcauk....

There is a massive amount of overlap even with "just" PMR that they just don't acknowledge.

I'd probably be arrested if a doctor tried to tell me my symptoms were psychological. I did tell my GP who comprehensively failed to diagnose PMR some 18 years ago but did try to make it "advancing age" that he needn't even think of going to the "all in your head" concept. He didn't ...

[LucilleG in reply to PMRpro]

Thank you so much for making this connection with my pulsatile tinnitus and borderline GCA and the 8th cranial nerve!

From tinnitus.org.uk...

"Pulsatile tinnitus is a rhythmical noise which is heard in the head and/or ears which pulses usually at the same rate as the heart beat.

It is usually caused by a change in blood flow, or change in awareness of that blood flow, in the vessels near the ear. If you are experiencing symptoms like these, please speak to your GP who will suggest a number of different tests."

When I first starting getting symptoms at the beginning of 2021, because I was getting this strong pounding in my head, (also had painful neck and shoulders - the pain in hips and groin hadn’t started yet), I decided to see a GP right away. If it was just the neck and shoulder pain, I never would have went. The GP said it was just stress and to see a massage therapist. They were right about the stress, but that is what most likely was the final straw to kick PMR into action. When I was finally diagnosed 5 months later, a different GP put me on 40 mg of Prednisone because of that original tinnitus just in case it was GCA. I did not notice the return of pulsatile tinnitus (PT) until May of this year when I was tapering from 5 to 4.5 mg (I also was getting neck niggles). I ended up going back up to 5 mg and stayed there for several months. I have since tapered from 5 to 4.75 mg, and then from 4.75 mg to 4.5 mg. I just began the DSNS taper to 4 mg today.

I need to keep closer tabs on the PT. It’s not as bad as it was at the beginning of January 2021, but it’s there. I haven’t had any neck niggles as of yet. Sometimes I notice the pounding very faintly in the background. I need to take notice if it’s always there and if I might be ignoring it.

I will go back over the link you provided to get some ideas of what I should do if it gets worse (besides most likely returning to 5 mg of Pred).

Do you have any suggestions of what else I should do? I have to be prepared when I meet with the GP to ensure that they take it seriously and they don’t try to make it seem that it’s something else without investigating the GCA connection.

[PMRpro Ambassador in reply to LucilleG]

I'd say there really is a chance it is the autoimmune stuff - and you need a bit more pred to manage it. Not really much you can do other than that I suspect.

It is all very well saying "stress" but here the rheumy department is very well aware that "stress" has a massive effect on the immune system and autoimmune disorders.

[LucilleG in reply to PMRpro]

Yes, I agree about needing a bit more pred and it being part of the autoimmune part of my disease. I want to keep going with the taper, but I know better...I really do! I wonder if I should just stay at 4.5 mg for another few weeks to see if the pounding gets worse. Right now, it’s really low level pounding. And it seems to be off and on.

When I originally started at 40 mg of Prednisone over 2 years ago, the pulsatile tinnitus went away. It never came back (that I noticed) until I was tapering down to 4.5 mg a few months ago. I have gotten lower before, but what usually happened was the niggles in my neck got bad and my shoulders were in pain again (so more PMR symptoms) - I just can’t recall if the pounding in my head was there.

I also have some good stressful stuff that started in the last month and will continue on for another 2 months, so I’m thinking that’s why the pounding has begun. In the end, the stressful part of this wonderful family situation will end and my overall stress will also go down. This situation has been weighing on me since early 2021, so by the end of this year, I’m hoping that my overall stress will be low (I’m off work right now and trying to keep my stress levels as low as possible in terms of physical activity, sleep, etc.)

[PMRpro Ambassador in reply to LucilleG]

And that ALL means a bit more pred will probably help. Been there with the stress bit - it demands more pred at the level you are at!

[Gimme in reply to LucilleG]

I seem to have dropped into that same rut as you. Grumpy rheumatologist saying that he thought I had PMR, but don't still have it and it must be something else. Sorry that guy upset you. I had very similar experience a few weeks ago. It's totally undermined my confidence in the rheumatologists. I am starting to feel that so many of them have no idea what they are doing. Reading your post, it suddenly dawned on me the reason I have felt so despairing at times.

[PMRpro Ambassador]

Given who wrote it it should be reasonable - Sarah Mackie and Christian Dejaco plus Matteson is a very good triumvirate. Salvarini is usually on point, Not familiar with Maria C Cid but I know she is good.

I will try to remember to ask one of them for a copy. And complain about the over 50 bit ...