Hello
Paul here from North Carolina, USA
I just found an interesting new video on Youtube about PMR.
Youtube. - Polymyalgia Rheumatica: What has changed since 1957?
youtube.com/watch?v=mWBPr-z...
As this community. has been so helpful in my understanding of PMR I wanted to share this post so others might benefit from the clear descriptions and images. Hope it helps.
All the best to you
Paul
Been trying to find time to watch it without much success! But what I've seen looks a good introduction. Thanks!
I found that it gets into more standard medical practice later in the video, but the imaging, and descriptions of them is something I found helpful.
Having now watched it all - if you ask me it should be part of CPD (continuing professional development) training for all GPs and rheumatologists. He deconstructs the 1 year taper quite nicely and picks up on things that we patients keep telling doctors that they don't seem to believe! Or ignore as treatment goes on - adrenal wobbles above all.
And as a real world example of the SAPHYR trial approach but using Actemra - yup, I fitted that nicely: after over 13 years on pred, an IL-6 inhibitor got me from 19mg to be stable to 7mg. At 6mg the bicep tendinitis starts up again and is horribly disabling plus I can feel adrenal wobbles. At 7mg I can cope with both well and so far appear to be stable at 2-weekly injections. My next step is to extend the time between injections - if I could get to monthly it would be amazing.
Very thorough, current and informative. I did have to snicker when the presenter stated one year on steroids is a long taper, as I sit here year 6.
Thank you for sharing.
I rather assumed some of rubbish like that was BOUND to occur but hey-ho ...
Seemingly, it always will… 😊
Very interesting, thank you
Thanks, really interesting and certainly captured my experience of this disease...very rapid onset from complete state of health and fitness to a state of partial paralysis.
But I do wonder with such a clear clinical diagnosis on symptoms for most of us, and the result of a prednisone challenge....why recommend MRI (very expensive) for diagnosis? Of course the one year of pred is nonsense.
Perhaps this was a missed opportunity to talk about how clinicians can help reduce some side effects of pred with good dietary advice from the first day the drugs are prescribed.
Reading the personal accounts of PMR on here it seems that maybe this isn't a single disease...many shared symptoms...but those who do recover in one year and those who take more years...and those who have very long-term PMR pehaps indicates a more complex package of related diseases.
Also the descriptions of the onset of PMR seems very different across this community. And now we have those who respond to sarilumab and those who don't.
IL-6 just part of the picture?
But I wonder if looking at the type of onset could distinguish the path of recovery /non-recovery??
I put these comments forward very tentatively...there are people on this forum whose advice I rely on, and are much better informed.
All been suggested by us to the interested doctors! And judging by the London meeting we got to listen in on a few weeks ago they are beginning to get their brains in gear for the hairpins! The clinical trials for tocilizumab made it clear IL-6 is only part of the GCA story, now it is clear that PMRLVVGCA is a spectrum - and although they aren't there yet, I think a considerable amount of PMR is not at the extreme PMR end but hovering around a third of the way along. They are already seeing that LVV is more difficult to deal with than they thought and I don't even think a lot of it is "extracranial GCA" - the inflammation is different and as it was very clearly stated by Neil Basu at the Scottish AGM, you can't biopsy until the patient is on the major surgery list or the pathologist gets them PM, so they haven't really looked that closely. I think (not sure) that in a lot of Long PMR patients it starts more slowly - it took about 9 months before I got really stiff and in pain, though I have had relapses that onset with a sudden "I can't move" episode. They have shovelled us all into their little boxes whether we fitted or not but now light is dawning - not a little due to the experience gather here on the forum and a few determined patients who pass on the facts.
thank you for such a detailed and informed response...I am now copy pasting it into my folder on PMR. It seems so difficult to get docs to listen to our real lived experience. The consultant rheumatologist I encountered early on in my PMR spoke AT me for a couple of minutes and then walked off...his senior registrar was left looking very embarassed and then ran after the " great guru." If he had listened to my symptoms he would have realized, as I now do, (thanks to this forum)that I had had an ocular migraine for about half an hour and lacked ANY symptoms of GCA. He never saw me again but did say I needed 50 mg of pred a day for at least the next 3 months. Only when I came here, after many weeks, did I learn about tapering. Fortunately my GP was happy to step in and help.
There are increasing numbers of doctors who DO realise the greatest source of information about their illness comes from the patient themself so it pays to listen to them! And as for 50mg pred for at least 3 months - no way you can say that at the start and in some cases that could be downright negligent. Wouldn't want to be his patient!
Thank you for posting this, very informative video, although I haven’t seen it to the end yet!
Thank you. 🙂 I found it really interesting and positive. I particularly found it interesting to hear the explanation of it being the tendons and soft tissues around muscles and joints being affected rather than joints or muscles.
I found it so weird and confusing with my PMR symptoms that even though I felt like my muscles had completely seized up it felt so different to any other muscle troubles I had had in the past. Plus explains why exercise, muscle stretching, hot baths, heat, ibuprofen (i.e. things that would normally help) never had any effect whatsoever.
Lots of positives too which I will hold on to:
- Fixable (even though of course not a quick fix or an easy road)
- Generally doesn't damage the joints
- PMR patients' muscles can still be strong (even though they feel to the patient weak).
- the fact that steroids often work well to help symptoms (though of course steroids have their own issues).
Thank you for posting. 🙂
Thank you for posting this informative and comprehensive presentation, given with much sympathy and empathy for patients.
I have PMR & GCA-LVV and it described my experience over the last 8 years. I am fortunate in that my Rheumatologist was an author of at least one of the papers he cited!
Regarding comments on the one-year taper - he was not advocating that and gave data on how many patients were still on steroids after 5 years.
Finally got all the way through - my comment above:
"Having now watched it all - if you ask me it should be part of CPD (continuing professional development) training for all GPs and rheumatologists. He deconstructs the 1 year taper quite nicely and picks up on things that we patients keep telling doctors that they don't seem to believe! Or ignore as treatment goes on - adrenal wobbles above all.
And as a real world example of the SAPHYR trial approach but using Actemra - yup, I fitted that nicely: after over 13 years on pred, an IL-6 inhibitor got me from 19mg to be stable to 7mg. At 6mg the bicep tendinitis starts up again and is horribly disabling plus I can feel adrenal wobbles. At 7mg I can cope with both well and so far appear to be stable at 2-weekly injections. My next step is to extend the time between injections - if I could get to monthly it would be amazing."
I'm glad that this had such a positive reaction. Now I need to go back and listen for all the details that slipped through the many cracks in my understanding!!
It's so interesting how each of you picked up on different details. Being a visual learner I related to the MRI images and connected it to my prior training as a massage therapist. I am starting to see how my first attempts to treat myself with massage, stretching , and hydrotherapy failed. While I don't want to go out and get an MRI tomorrow, It is useful to see that at the university research level these tools are providing new information that can guide care and treatment for others and perhaps improve that care. I think I'll share this with my rheumatologist next
I meant to say - those are some of the best pictures I've seen of imaging results. Most don't look like anything human!
When I had flares of inflammation in attachments my last physio was great at easing it with some extremely targeted mobilisation techniques, That releases the cytokines into the system to wash them out. That's something fairly specific to Germanic medicine I suspect but something I value. Alongside pred they can be fantastic add-on management techniques but accessing them can be really difficult.
If you could speak about the mobilization techniques, I would be interested. And I will have to look up cytokines too. I have suggested my massage therapist to do much lighter work around the hips and shoulders and also she uses silicone cups that create suction that she said pulls inflammation from the tissues and fascia. Kind of like Chinese cupping therapy, but moving with oils on the skin. Not sure if this works deep enough to reach the tissue surrounding the joint, but it sure seemed like it. I was moving easy all that week. Wish I could go more often.
Just her fingers digging into the various trigger points and attachments - that was what it felt like! Very uncomfortable at the time but the release afterwards was always incredible! Both she and my rheumy unerringly find the point of maximum ouch - don't need to explain, they just know. The first anaesthetist in the Pain Clinic that I saw was equally gifted but she was fed up with the politics and went off to be a GP in a village further up the valley. Her replacement is probably very good if I hadn't experienced Astrid's gifts! Most people on the forum struggle with the deep massage techniques - I don't mind feeling worse before feeling better ...
Have a look at this re cytokines -
I'm thinking this may be what my physiotherapist does for me. I have lot of issues with my neck, have severe osteoarthritis and a major PMR flare in late 2020-early 2021 centred very much on my neck and shoulders. (In fact I blamed it all on OA until an-increase-in-pred-dose trial was a miraculous cure.) She gives me massage and mobilisation, then about half an hour of low level light therapy and for some time I've been going about once a month as a sort of maintenance treatment although it was more often when PMR things were more serious for me.
If you're interested in light therapy you may be able to get it as it's available in the US as well as Canada, not yet so available overseas. bioflexlaser.com/
Was having a mindblock moment when I replied and then had a lightbulb moment in the wee small hours!!! What all of the successful procedures have had in common is that they included myofascial release. I am quite sure that MPS (myofascial pain syndrome) is an integral part of PMR and accounts for the generalised muscle tenderness patients describe and is part of the cause.
pubmed.ncbi.nlm.nih.gov/180....
which of course is behind a paywall!!! They are very identifiable in many patients in PMR but some doctors confuse them with the fibromyalgia trigger points.
researchgate.net/figure/Myo...
shows the pattern in the upper back and shoulders in that first figure. I have a few doctors here who use or have used needling, usually wet with lignocaine though one doctor used saline and it wors too. Haven't had dry needling.
Thanks LucPaul for the link. I found the video very interesting and have shared it with others. A।though some of the texts were too small to read, the main points were set out well.
The suggestion that an MRI scan can show up where the inflammation sits is useful. I may see what Vista Health charge and if their radiologist is really up to speed on identifying sites of inflammation. Prof Hughes might be a better person to suggest a good imagining centre. I would not put much store in the NHS' imaging facilities around here.
Reference to inflammation sacs around the bursae also resonates with my experience. When you see where they sit near the muscles particularly around the hip girdle, it all fits in with our symptoms. Prof Hughes You Tubes are very helpful too, but yours was better and warrants several viewings.
The section on Methotrexate convinced me that it is not for everyone and very slow tapering is preferable for most of us.
Thanks again
Thanks so much for this very useful, up to date and clear lecture. People have already picked up most of the issues. One which remains for me is why in many people (but as PMRpro says, not all) the onset seems so dramatically sudden, even overnight. This is an obvious research question - has it not been followed up?
I don’t think is a sudden onset in many cases.
The inflammation may take a number of weeks or months to build up slowly until it’s enough to cause the pains to develop and then the patient realises there’s something amiss.
Not sure how you research that unless you regularly monitor CRP/ESR levels.. and as we know they aren’t specific to PMR or GCA.
Yes, indeed, I guess that is how it occurs sub-clinically. I do seem to have read many accounts here, however, from people who do not seem, on looking back, to have concluded that they had been on a rising gradient of pain or stiffness. In my own case I do think my wrist pain did get steadily worse before the shoulder involvement raised a red flag to the doctors.
Sudden or not, my memory of things is that it came on quite quickly and I was not able to exercise or even push myself up off the floor within a relatively short period of time. I spent the previous year exercising to counter a different movement disorder which made me feel confident and stronger than I had in years. A Naturopathic physician friend suggested I may have had a reaction to either the covid vaccine, or an actual exposure that took me over the edge. In that case as DorsetLady suggests, things could have been brewing for a month or two before it flared up. A shame it takes so long to climb back up to where we began.
thank you this video is so helpful and interesting
Very interesting, even watching it from the other side of zero pred. I do agree with those who say sudden onset usually not really the beginning. Now I know a lot more than I did in 2014 when I certainly had PMR symptoms (but not diagnosed until 2015) I can see I'd had the start of symptoms for years beforehand, and probably relatively good health kept it simmering as "ageing or "osteoarthritis" until stress caused a catastrophic decline, aka "sudden onset."
Thank you for posting that clip. It was Saturday night viewing for me! I found it to be really interesting. This is such an unpredictable illness, which rarely seems to follow any linear pattern. Most people seem to have many detours and dead ends along the way. I think it is really important if our health professionals understand this.
Cheers for sharing this with us.
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