Vasculitis

[Hughie1951]

Hi

I saw that there was some evidence that PMR was a form of vasculitis.

Can’t find the link!

Is there anything else I can access about the pathology of this condition.

Recently diagnosed but want to know more.

Thanks

Hughie

[PMRpro Ambassador]

This article

academic.oup.com/rheumatolo...

looks at the spectrum of vasculitis in the forms of PMR, LVV and GCA.

If you have other questions ask and I will try to find more links for you.

[Hughie1951 in reply to PMRpro]

That’s how I got here, I think.

But it’s the paper I wanted.

Thanks.

[PMRpro Ambassador in reply to Hughie1951]

Sorry - was not concentrating - I saw Vasculitis and assumed I was on the VasculitisUK forum where I am also a member!

[Hughie1951 in reply to PMRpro]

I was getting confused!

May get back to you on further links though. Obviously get what the name means but couldn’t find any details of the actual pathology. Even found some bits saying tenosynovitis was involved.

I’m a vet so I’m afraid I’ve got the mindset.

[PMRpro Ambassador in reply to Hughie1951]

Which aspect of pathology? GCA has a clear pathology, giant multinucleate cells - I don't think anyone knows about PMR to be honest. Although there was a suggestion from a student project that the capillaries supplying the elastic layers of the arteries MAY be involved in the development of GCA but I never heard any more about that and I don't think it was published.

[Hughie1951 in reply to PMRpro]

Luckily I’ve only got PMR.

I understand the pathology behind GCT.

Just wondered what, actually, is making me ache.

Was often in the same position to the question “why” as a vet. The answer was “it just is”!

[PMRpro Ambassador in reply to Hughie1951]

I and a few others think there is something up with the oxygen supply to the muscles. I also wonder if for some reason the muscle sarcomeres are more easily torn apart because of the inflammation - and so you develop a form of DOMS. If you overdo it DOMS can be horrendous in PMR patients and take weeks to resolve because the tears don't seem to heal. There have even been suggestions that severe physical overexertion can trigger PMR - which might account for the shorter lived cases.

ncbi.nlm.nih.gov/pmc/articl...

jrheum.org/content/46/12/1552

admits "the precise pathology underpinning PMR remains unclear". I haven't seen that paper before, must read it properly but I like the bits about myofascial lesions - I have said for ages that myofascial pain syndrome and PMR are much more closely links than anyone in most of mainstream medicine. I have MPS and it always starts up at the start of a PMR flare - is it the trigger? Or even the cause of the rest of the PMR stuff?

[Hughie1951 in reply to PMRpro]

That is so useful, thanks so much.

My shoulders are still quite uncomfortable as compared with unbearable before treatment. I was wondering about physio and exercises for them but couldn’t get any definitive advice. Now that you’ve mentioned DOMS and PMR together I think I’ll be a bit circumspect,

[DorsetLady PMRGCAuk volunteer in reply to Hughie1951]

I would opt out of the physio, unless you can find one that is au fait with PMR.

Gentle exercises may be okay - but not too vigorous nor too often!

[PMRpro Ambassador in reply to Hughie1951]

I would!!!!

Your treatment is ongoing - and you need ENOUGH pred to manage the inflammation that is there. It is possible that the shoulders are either persistent bursitis or MPS making the traps and even maybe the lats tight and spasmed outting strain on the entire back and that always gets my shoulders. Possibly more pred for longer or local steroid injections for the shoulders,

[Hughie1951 in reply to PMRpro]

Should you expect to be pain free on prednisolone at the right dosage?

Sorry, not really meaning to make this into a consultation. But this has all been incredibly helpful.

[PMRpro Ambassador in reply to Hughie1951]

Depends, some people are, some people aren't. You should have at least 70% improvement in symptoms. The best result you get with the starting dose and achieving normal range blood markers is your guide - it shouldn't get worse again. Say you start at 20mg and you aren't pain-free then it makes sense to try 25mg for a few days to see if it is better. But you have also to bear in mind that some of the pain may take a long time to resolve - my feet and hands took a few months to be pain-free, I had quite bad tenosynovitis in them. The hip bursitis took ages to go too.

[DorsetLady PMRGCAuk volunteer in reply to Hughie1951]

Probably the majority are and that’s the aim .....but if you’re at least 70% better that's sometimes classed as successful.

In some cases, patients don’t get the full benefit from the medication.

But you must remember that you still have the underlying illness, all the Pred is doing is controlling the inflammation caused by it, it does nothing for the illness itself. It’s not a cure.....there is no cure!

So you have to temper your activities a little to accommodate your illness - and be on the right dose at the right stage of your illness!

You might (or maybe not!) like to have a look at this -

healthunlocked.com/pmrgcauk...

[bakingD]

Hi Hughie

Just thought I’d say hi I’m an Oncology nurse and have had PMR for 2 years-I found I had to give up my exercise classes as it seemed to do more harm than good!!akso gardening does me in yet cycling no troubles at all and last year I cycled across Costa Rica!a whole 222 miles-don’t overdo it or it can set you back for weeks- am finally learning to pace myself and currently on 5 mg Pred

Good luck 😉

[Hughie1951 in reply to bakingD]

I realised I shouldn’t have done all that strimming. I’ll know next time!

[PMRpro Ambassador in reply to Hughie1951]

No - strimming is definitely a no-no! Except 5 mins at a time, 10 mins a day, and you MIGHT get away with it!!!!

[Hughie1951 in reply to PMRpro]

That’ll do me!

I realise I was given so little info.

We’ll do BS just to be on the safe side.

Your markers are high so it’s probably PMR.

Here are your pills.

We’ll ring you in a month for evaluation by the nurse.

Nothing about how to manage it.

Glad I’ve got some medical knowledge.

Very glad I’ve found this site!

[PMRpro Ambassador in reply to Hughie1951]

That's why we are here - all patients with the t-shirt, some saw the film as well, several of us expert patients and happy to share. Once upon a time I could have discussed the pathology rather better but I can still read it and understand most of it. But the GPs read the textbook and believe it - until THEY develop PMR. And THEN they understand and their attitude changes it a bit. It does happen!

[Noosat in reply to Hughie1951]

My experience 17 months ago - "you have PMR takw 40 mg of prednisone for three days then drop to 20mg, Here is the date of your next 6month appt." I have struggled along on my own with this site for guidance. I am down to 3mg. 5 weeks ago I had a fall, more like a stumble while in garden. Two days later had huge pain in left thigh. Eventually in to see doctor who ordered x-ray. No broken bones so here is date of your next 6 month appt. I have been struggling, difficult to walk etc. Have an appt. with orthopedic doctor in a week's time. However, last 2 days pain and mobility seem somewhat better. Should I keep doctor appointment or could this pain be connected to PMR? For me that started with absolutely unbearable thigh pain. Should I make appointment for a later date?

[PMRpro Ambassador in reply to Noosat]

A fall has been shown to trigger a flare of PMR:

ncbi.nlm.nih.gov/pmc/articl...

In the case of thigh pain - maybe because the hamstrings as well as the other muscle/tendon juntions are involved in PMR.