Knock Knock..."Who's there?" GCA called out suspiciously. "PMR!"

[Blurry62]

GCA and PMR are often mentioned in tandem; as though the two conditions, very often, go together. As a GCA patient, I'm wondering at what point, in the GCA disease process, PMR is likely to knock on my door. ( If it's going to at all. )

[DorsetLady PMRGCAuk volunteer]

Hi,

Not necessarily a given - I had GCA, never PMR - and there are others on the forum in the situation.

I found this information some time ago, relates to UK study, not sure what date, but I guess the percentages are roughly the same whenever or wherever you are -

UK Study.

PMR is likely to affect 4 in 10,000 people (1 in 2,500, although some sites says 1 in 2,000)

About 1 in 20 (5%) of those on treatment for PMR [or 7 (35%) out of 20 people with untreated PMR] are likely to develop giant cell (or temporal) arteritis, a related condition causing inflammation of arteries.

GCA likely to affect 22 in 100,000 people (1 in 4545) Up to 50% of people with GCA also develop PMR.

Similar medications are used for both conditions. Women more commonly affected than men.

[Blearyeyed in reply to DorsetLady]

That seems to add up to me .

Having GCA , then PMR diagnosed after it.

And , from reading replies from other forum members although it doesn't happen to all (or most , "Don't panic Mr. Mainwaring!!") it does seem more common to read more GCA members eventually having PMR than PMR sufferers getting GCA.

Big sigh of relief can be heard from new PMR folks!!!

( Although , obviously it's still important to keep a relaxed eye on your symptoms with both conditions in case the other may be showing its ugly mug!!)

[Blurry62 in reply to Blearyeyed]

Sooooo, PMR could, potentially,show up at any time? No "most likely timeframe" here.....is that correct?

[Blearyeyed in reply to Blurry62]

There is no specific timeframe for PMR after GCA or vice versa , but also remember that it may not happen at all . Look at the figures in DLs reply.

Basically , it does depend on having the right symptoms and , in terms of getting PMR after beginning treatment for GCA , would not present until you are at a Pred dose that is lower than the amount you require to manage the level of inflammation you are experiencing.

Have you been checked for any possible muscular , skeletal or neuropathic causes for your increased body pain yet?

It may be a good idea to have these possibilities examined if you were still experiencing alot of body pain even when on your higher doses of Pred for GCA.

If this sort of body pain has only started since GCA , and keeps increasing ,despite increases in your dose it would also seem sensible that they consider checking you for steroid myopathy as well .

[Blurry62 in reply to Blearyeyed]

You all are so sensible. I do have bilateral aches and stiffness in the shouders but, the generalized body pain I'd been experiencing is 90% better since slowing down the taper. None of the doctors have ever mentioned steroid myopathy.

[Blearyeyed in reply to Blurry62]

If the body pain is improving 90% now you have slowed the taper you don't have to think about steroid myopathy.

It has not been that long since you have been allowed to wait on the dose you are on at the moment and with a few more weeks at that level then a very slow taper after that I have a feeling many of the problems and pain you have been experiencing will get under control.

Don't forget some of your pain could have been muscular and nerve related because you have been put under so much stress trying to sort things out the tension would have caused tightness and pain, especially in your shoulders.

The peace of mind you will have by not being rushed anymore let you relax enough to relief some of that pain too.

Now you have a plan take some time for yourself and relax for enjoyment, not just rest because you are unwell , it will make you feel much stronger .

Take care xx

[SheffieldJane]

They are both similar in that they are forms of Vasculitis. The main difference is the areas of the arterial system that are affected.They go together in so much as, one day they may be regarded as expressions of the same disease.

A significant proportion of people with GCA find themselves being affected with PMR symptoms and the other way round. It is by no means inevitable. I have read here that one in five cases of PMR can progress into GCA. If you experience bilateral pains in your shoulders, pelvic girdle and other areas, it is likely that PMR has joined the Party. This is my understanding so far. I hope this is of some use. More technical descriptions are available from other members.

[Blurry62 in reply to SheffieldJane]

Thank you.

[Marijo1951]

They definitely did go together with me. I had my first GCA symptoms in March 2017 and my first PMR symptoms in April 2017. At first I kind of assumed it was like that for everybody, but reading this forum has taught me that each person's experience is unique.

[Blurry62 in reply to Marijo1951]

Do you remember what dose of pred were you on when the PMR symptoms began?

How are you doing with GCA and PMR now? What meds are needed?

Thanks for responding! Much appreciated.

[Marijo1951 in reply to Blurry62]

I was actually diagnosed at my first rheumy appointment on 31st July 2017. As I had GCA I started on 60 mgs per day. I'm now on 7 mg per day and struggling a bit. I'm very fatigued but the only pain I have is in my shoulders (much less intense than initially) and the occasional twinge in my pelvic area.

[SnazzyD]

Hello, I think as with many diseases it is worth knowing about worst case scenarios but then you have to stop trying to second guess if you are going down that road because you just can’t and you go bonkers in the process . Statistical odds are not much good to the individual. Nevertheless every twinge, I ask, “is this PMR?”.

If you’re feeling brave, this article shows that there is not an easy cut off and that it is a spectrum of vasculitis. Annoying but not surprising because bodies just aren’t that simple.

academic.oup.com/rheumatolo...

[Blearyeyed in reply to SnazzyD]

Spot on Snazzy , when you know the symptoms to keep an eye out for , it's best just to spend the most time working out ways to relax and reduce things that tire you out. Thinking too much about what could be only builds up stress , and stress means tension and more pain.

Being calm , restful and looking after your mind and body through pacing , good diet and activity that you enjoy , at a level you can cope with , is a better way to make the illness behave , GCA or PMR.

[PMRpro Ambassador]

They are fundamentally the same disease but cause different symptoms because they are regarded as affecting different parts of the body. You can have PMR alone, GCA alone and both, in that PMR can be one of the symptoms of GCA. GCA requires higher pred doses than PMR to control the inflammation at first and the PMR may reappear as the pred dose gets to below 15mg. .

academic.oup.com/rheumatolo...

Figure 1 shows how they overlap.

[Blurry62 in reply to PMRpro]

If a rheumatologist says, "I do not believe the GCA is active." Is he in effect saying, "I don't believe this patient has experienced a flare." ?

I read the clinic note from the rheumy who has the least amount of GCA experience but, unforntunately must be kept in my medical loop because of insurance. He is the same one who-- early on in my GCA journey- asked if I'd ever "seen anyone for my headaches." Quite crazy.. and he doesn't believe stress affects disease processes and told me he would treat me for a year and send me on my way at 100%

He did, however, admit --( after that year was up and I sat in the office holding my head, emphatically desperately saying---this is GCA pain! )--that he wanted to get a second pair of eyes on me. I found the vascular doc through the Vasculitis Foundation and rheumy #1 approved/referred. The Vascular specialist is calling the shots now. He disagrees: he believes I had another flare and that stress does indeed play a role.

Anyway, I wanted help untangling the jargon. Active/flare ....the same thing?

[Hidden in reply to Blurry62]

I don't know what the medics jargon is. But to me active means I still have pmr that is controlled and unless I stopped the pred I wouldn't really know. It can go on for as long as it goes on.

A flare might occur as evidence of that activity if pred drops too low or symptoms return due to stress etc. It may last a couple of days or weeks. Either way ...PMR is still with you. But I would say no flares would not mean no active PMR. Just means you are on right amount of pred and doing your pacing etc. But if it's active it can flare at any time.

As I say I don't know if that what it means medically. I may be on the wrong track altogether.

[PMRpro Ambassador in reply to Blurry62]

Until you can get off pred without a return of symptoms NO-ONE can say whether it is active or not. An ultrasound of the temporal artery can show there is nothing there - but it still doesn't mean it isn't somewhere else. Until they can find a specific marker for GCA they will have to rely on the empirical test: can this patient manage without medication?

As long as you are enough pred there will not be enough inflammation to provoke what is called the acute response - which will raise the ESR and CRP in 80% of patients. The other 20% are unlikely to have raised values anyway. Symptoms are the gold standard for that - symptoms trump lab results every single time. Even the other way round: raised markers in the absence of symptoms mean check the blood and look for a trend not a kneejerk increase in pred.

"If a rheumatologist says, "I do not believe the GCA is active." " they are expressing a personal opinion that is possibly hot air and nothing else. Given his other opinions - it's quite likely to be hot air.

[Mikb]

I was diagnosed with GCA in May of 2017 and with PMR in May of 2019.

[Labradorite]

I was diagnosed with GCA in December 2015 and reached zero prednisolone in July 2017. In January 2018 I was diagnosed with PMR. Since then I have followed my rheumatologist’s prednisolone tapering schedule, starting at 15mg per day and currently at 1mg on the way to zero. I still have some stiffness and pain but it’s tolerable. I suspect PMR is still hanging around.

[Blurry62 in reply to Labradorite]

Thatnks for sharing your experience.