PMR and LVV

[Gaijin]

Thought this was an enlightening abstract ..a lot of us PMRers would relate .

acrabstracts.org/abstract/p...

[PMRpro Ambassador]

Oh definitely!!!! It is very satisfying that clinical studies are confirming what I have said for the last 8 years! Thank you!

[Gaijin in reply to PMRpro]

I even ran across a term "PMR associated LVV" , a type of LVV that was listed along with GCA, Takayasu and various other vasculitides

[Gaijin in reply to Gaijin]

It was in this paper...also relevant to to those of us that don't JUST have classical PMR .

ard.bmj.com/content/75/Supp...

[PMRpro Ambassador in reply to Gaijin]

Hmmmmmmmm..............

[CT-5012]

Thank you very much for these links. Will be discussing these with both rheumy and stroke doc.

[SheffieldJane]

How interesting! Thanks for posting this. X

[Polywotsit PMRGCAuk team member]

Thanks for posting! Now, as this was just a session at the ACR conference in 2014, meaning that they probably just had about ten minutes to present, it would be worth finding out whether they have published an article since then. Diamantopoulos is in the international working groups on PMR and GCA. I've checked his list of publications and I'm not seeing anything connected with this particular abstract. I'll drop him a line.

Eileen and I have been saying for years that PMR and LVV are closely linked. In the days when we were first diagnosed, patients were told they had a 'muscle problem'. Now it's practically incontrovertible that many people with a PMR diagnosis have a vasculitis. It may be that there is another form of PMR, a kind of 'simple' PMR that is a form of bursitis. So in the future we might find that PMR as we know it splits into two separate diseases. Anyway, that's my prediction.

[HeronNS in reply to Polywotsit]

Your comments about the different kinds of PMR are fascinating. Although some people are still being told they have a joint problem. When I thought my (undiagnosed) PMR was osteoarthritis getting worse I was very puzzled that the pain was in my muscles (I guess in the blood vessels) and not the joints!

[Polywotsit PMRGCAuk team member in reply to HeronNS]

I don't know for sure, but I have wondered whether the pain in the muscles can be due to claudication in some cases, i.e. the tissues crying out for more oxygen. I'm probably wrong, but can't help thinking that anyway. Certainly when I would wake up in the night with excruciating pain in my hips and glutes, I would wonder.

[HeronNS in reply to Polywotsit]

I suppose that claudication would be caused by the inflammation?

[PMRpro Ambassador in reply to Polywotsit]

If someone has claudication pain it almost certainly is ischaemia, lack of oxygen. And since the pain is in muscles - what else is it? I had bicept and quad claudication: came on with repeated or sustained actions, went with rest and came back with renewed activity.

[Gaijin in reply to PMRpro]

Could you explain "claudication"?

I never related to " stiffness"or just plain PMR pain , pain not related to muscle exersion. My main symptom before DX was what I described as "muscle fatigability", but I think I was mistaken because my muscles aren't really weaker, my biceps, abductors and glutes hurt the more I exert them , till I can't continue the activity.Wouldn't that be called claudication? The cardiologist that saw me recently wrote that I showed no signs of claudication (not sure what he based this on) and a very young locum rheumi told me it wasn't claudication if it was bilaterally on both upper and lower limbs.

I've lived here for 45 years, speak native level Spanish, and yet every time I have a medical consultation here, I get cultural shock ! Describing symptoms is very culture -sensitive, I'm finding.

Oh..and what does the term "intermittent" in the context of claudication mean? OH says it means that it hurts when you exert and stops when you rest. To me, intermittent means sometimes when you exert it hurts and sometimes it doesn't. ..

[PMRpro Ambassador in reply to Gaijin]

Intermittent claudication pain starts when a muscle is exercised, goes away when you stop and returns if you resume the activity. Later, as the disease process progresses the blood flow even at rest may not be enough for the normal metabolic processes and that leads to what is called "rest pain". Sometimes patients complain of leg pain in bed - but can relieve it by hanging their leg out of bed so gravity helps blood flow.

Claudication CAN be bilateral and upper and lower limbs - what a stupid statement. I had bicep claudication (I couldn't hold a phone to my ear and had to keep swapping hands!) and bilateral thigh claudication. It depends on WHY it is happening and generalised inflammation can reduce blood flow all round.

en.wikipedia.org/wiki/Claud...

uptodate.com/contents/perip...

emedicine.medscape.com/arti...

[Gaijin in reply to PMRpro]

Thank you, that's exactly what I feel... Cant hold the phone in my hand , when typing, both shoulders hurt. When I bend down to tie shoes or to get something out of a low drawer etc, the muscles around my whole torso hurt and I get dysnea.

Going back to my rheumi's remark about 8-10 months of PMR, maybe he was referring to the pure and simple PMR? But even so, that's cutting it really short!

[PMRpro Ambassador in reply to Gaijin]

Not according to the rest of the world. i don't think Spanish PMR is different!

[Gaijin in reply to PMRpro]

You are such a great teacher PMRpro! Ive read the links you posted and I understand claudication now.

I just can't understand how he could believe such a thing..and I think there are some other people on here that have been told by their rheumies or GPs that their PMR or GCA will go in remission in a year .

I remember when the rheumatologist that first diagnosed me wanted to take me off Prednisone after only a month because I had broken my pelvis and he thought it was due to the pred. I panicked, read Kate's survival guide where I think I got the link to patient.org and Eileen came to my rescue. I had to wait 7 months to see the new and present rheumi, during which time I only had Eileen's guidance and OH's prescritions (lttle did I know that prednisone doesn't even require a prescription in Spain)..I don't know how elderly people that suffer from PMR/ GCA get through their journies without having access to Internet.

[DorsetLady PMRGCAuk volunteer in reply to Polywotsit]

For sure, if blood vessels are blocked in anyway then oxygen is not flowing around the body as required, so muscles are bound to be starved. I’ve always though that and do hint at this in my post to newcomers.

Having lived with my husband and his angina attacks for many years you learn much about under performing blood vessels.

[PMRpro Ambassador in reply to Polywotsit]

Not just 2 - I think AT LEAST 3...

[Gaijin in reply to Polywotsit]

Vasculitis, if left untreated can cause fatal damage, I think. So, PMR sufferers who seem "resistant" to steroids and have atypical symptoms together with classical PMR, should be tested and followed closely, I would say . Vasculitis can be asymptomatic until the permanent damage is done . I mean, 40% is a lot of people that have PMR and were found to have vasculitis..kind of scarey! You anties and uncles are so knowledgeable in PMR/GCA, I've learned s much that it really is frightening to be in he hands of doctors that aren't up to date on our conditions.

[Polywotsit PMRGCAuk team member in reply to Gaijin]

Absolutely. I think that medicine is going to have to start paying much closer attention to PMR.

[Gaijin]

Thank you for sharing that, M-argo. I do have symptoms although my ESR is normal now and my CRP though raised , has a "good trend". I read somewhere recently that vasculitis , after the inicial stage , frequently shows normal ESR .

You were lucky that it was found in time, before it did any permanent damage .

[Hindags]

Thanks for posting this abstract. I wonder when their recommendations will be put into practice and how the findings will change the PMR treatment protocols?

[Lochy]

Interesting post thanks. I believe I have PMR diagnosed two years ago but always describe a pain or strange sensation in my arms, as if my veins are inflamed. Makes sense when I read some of this. If it is some sort of vasculitis is the treatment different? I seem very steroid sensitive and reckon I don’t absorb the full dose. Is there another drug for GCA or vasculitis?

How do I know if I have GCA too if I’m already on steroids? I’m currently worrying about a new pain/discomfort one side of my jaw and around my ear! I’m never quite sure when to rush to my GP or just wait see. Currently on 11mg and planning a taper to 10 again after I return from my holiday next week.

[PMRpro Ambassador in reply to Lochy]

Not necessarily - although some forms of vasculitis do respond to other drugs. In the case of GCA/LVV/PMR in this context, pred is as good as it gets unless you qualify for Actemra and that isn't for PMR yet - and probably a bit OTT for it mostly! But not absorbing all the pred you take is immaterial - that is why you start at a higher dose than you need and taper to find the lowest dose you need, it is called titration.

If the jaw/ear problems increase as you reduce - then be persistent with your doctor. But what is the jaw pain like? When does it happen? What makes it worse? Does it happen when eating, go away when you stop chewing and come back when you start again?

[Lochy in reply to PMRpro]

It’s really the first time I’ve had any discomfort in my jaw. Here yesterday and gone today. Bit of discomfort as if my jaw joint was stiff as opposed to pain when eating but not every time. Nothing today.

I did have to endure radiotherapy for a vestibular schwannoma which was discovered bit too close to the nerve of my ear and the trigeminal nerve back in October and they did explain things could flare on occasion before it settled and that could take up to a year. This discomfort around jaw and ear is on the same side so most of me is putting these new symptoms down to that. I did speak to hospital about it yesterday but my consultant is on holiday and the registrar I spoke to didn’t really have any comment about my GCA concerns. Didn’t get the impression she had any idea about it but to be fair she isn’t a Rheumatologist!

Coincidentally I had my eye check up today and all is well with pressure and photos of optical nerve showed all is healthy. At least my optician was able to brief me a bit more about what to watch out for.

As you say I’ll keep an eye on it and pester my GP. In meantime I’m heading to your part of the world on Monday. Few days skiing in Champoluc, Italy if I’m up for it. Might be more watching others and Apres ski - not sure what that is in Italian - but it’ll be a nice break anyway.

Thanks for your advice.

[PMRpro Ambassador in reply to Lochy]

Not quite my part of the world - we are sort of north of Venice, the other side! But enjoy!

Dopo sciare doesn't have the same ring does it? They say apres-ski here - very international ...

[Lochy in reply to PMRpro]

Yes I knew you were on the 'other side' another area I'd like to visit sometime. Dopo sciare I will remember but doesn't quite have the same ring to it!

[PMRpro Ambassador in reply to Lochy]

We have lovely ski areas...