PMRGCAuk
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Aches and pains

I have been off prednisone since last October, I had slowly reduced and all my blood checks are normal, however I,m far from feeling better now that I clear of PMR . My symptoms are , pain in upper arms when trying to reach out for something ,but only with my arms in a certain position or when using spanner’s etc at work , I get arm pains at night when turning over in bed ( as I did with PMR ) . All this with tiredness and stiffness when walking . I am taking 20mg of Nortriptylene to help me sleep and painkillers, Zapain tablets as needed .

I,m not getting far trying to get a diagnosis , if it’s not PMR what is it ?

I am due to see the rheumatologist next month and I could do with some answers if only to put my mind at Rest .

Hope I,ve not rambled too much :-)

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It does sound PMRish doesn’t it?

Does the zapain do anything?

Have you tested the water with a low steroid dose?

Bear in mind that 20% of us never have raised inflammatory markers. Then on pred I believe some people don’t raise again despite flares. So as you’ve ‘finished’ pred, I don’t know what your markers would do. Did they rise/fall during the course of your PMR, or did they fall initially and then stay low throughout?

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The markers fell steadily and stayed low , I forgot to say I have had shoulder X-rays and a dexta scan both clear , I also had tests that indicated I could have Parkinson’s but they followed that with a Brain scan which thankfully ruled it out . I have used a Tens machine on my shoulders and arms which has helped give me more movement in my arms but I still get the pains I mentioned .

Thanks very much for replying.

Nev

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Like at the beginning, when we’re seeking diagnosis, our reaction to pred seems to clinch the deal. Maybe you’re at that point again.

Just prior to zero....how did you reduce? And did you tail off at the end or just stop?

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Soraya has said it really. There can be muscle weakness following steroid use. I wonder if physio exercises would be an option if your Rheumatologist is sure that PMR isn’t rumbling again?

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You aren't "clear of PMR" - the low doses at the end were still enough to keep it under wraps or the disease activity was very low but it has woken up and is making its presence felt. Some people don't have raised blood markers after having been on pred for PMR (no-one knows why) or they lag a long way behind.

You are obviously being told your bloods are normal - do you know the figures? I had a period in hospital 6 years ago with a major flare where my ESR/CRP were "in normal range" so no-one said anything about it. A few months ago I discovered they had run at about 18 the entire time. My personal normal is low single figures - 4 to 7 usually.

You won't be the first person, nor the last, this has happened to. My friend got to zero pred and was fine for about 4 or 5 months and they were about to head off on the safari holiday they had had to cancel first time round. Then the stiff legs appeared. Her lovely rheumy just looked at her and handed her 10mg pred and said that would cover her for the hliday - it did and they had a wonderful time. This time she is far more relaxed about the dose - just like me, I take what I need to do what I want to do.

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Snap Nevb, only I started with GCA and I'm still on micophenolate twice a day. I do wonder what it's actually doing given the serious pain in my shoulders, arms and thighs as you've described. Thanks again for the good advice PMRpro, I'll hassle the rheumie people again on Monday. Arghhhh, I sometimes feel so confused. When it's pretty simple stuff really isn't it?

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Unfortunately, I don’t think PMR nor GCA are simple!

The treatment is (correct amount of Pred at all times!); but the diagnosis isn’t.

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Agreed that neither of these conditions nor the diagnosis are simple, just the treatment.

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Hi joyce69

I have been on mycophenolate since last June.. diagnosed PMR June 2016. I am currently on 9mg pred and have been for coming up to 3 weeks, for second time in 3mths. I am struggling as I can feel pain in thighs creeping back up and had he Frankenstein walk when I got out of the car the other day. I did a quick dose of plus5mg blast and hoping things settle.

I just wondered how long you have been on mycophenolate and what dose of pred you were on and if you believe it helped taper. I realise you were treated for GCA but obviously the intention behind it's prescription is to 'replace' pred. I am trying to decide if I would rather just deal.with pred. I will say that when I missed a dose of myco I felt terrible but the rheumy told me after I had a chest infection that I should have stopped it for a week.

Sorry for the long windedness, especially as you are struggling yourself at the moment. I haven't come across many on mycophenolate so any info gratefully received. 🌻

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Hello Poopadoop

Here goes, I was diagnosed with GCA in Dec 2012 and started in 60 mgs pred. I've been on mycophenolate since March 2016 (after finding methotrexate and aizapriothene didn't help at all). I was on 9 mgs I think at the time and had got down to 3mgs twice before. It was increased to 10 both times because of flares, muscle pain and thoracic back problems. The rheumatologist helped me with a very clear reduction plan which generally worked quite well. I was ok for about a week after each reduction, then started to feel like death for 2 weeks and then gradually better over the next week or so. It was painful. Club zero dawned in October last year. I was so happy. I have found the pred very debilitating. Again I felt OK for a while then definitely not ok again. The fairly severe shoulder, arm, hip and thigh pain started around Christmas. It has got steadily worse as has the dreaded fatigue and what you all politely call Grumpiness. The rheumatolgist thinks osteoarthritis. Suggested cocodamol 4 times a day. I tried it but stopped as there was almost no relief and a degree of constipation that I most certainly couldn't cope with. Have an appointment for an ultrasound on both shoulders in early April but I need to do something about the pain before then. Regarding mycophenolate, I just don't know. I thought it would be doing pred's job and keeping the inflammation at bay. PMRpros comment re 'taking what you need to do what you want to do' was a lightbulb moment for me today. There's a big question mark over micophenolate and the pressure, albeit sometimes perceived pressure, to cut out steroids in my case I think.

And you thought your message was long!!! Apologies if I've rambled on , maybe I should have sent you something privately rather than bore everyone.

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Thanks for the great reply- I read messages and learn so am sure no one minds anybodies long messages! The taper down then stabilising process is very familiar. I was practically unable to keep my eyes open in the afternoon when I hit 9mg using dsns. I have been to 8mg in 2016 but like you now I had terrible pains in the usual spots. Can fully relate with cocodamol side effect, which I take with tramadol for fibromyalgia and OA. I agree with the sentiments of your lightbulb moment. I am starting to believe that I would be better if I get to 7-8mgs of pred sticking to one treatment. I think rheumy putting me on myco was because I have pre-existing diabetes which pred pushed high enough to go on insulin for the first time in 18years.

I hope you get some respite and a better idea of what's going on with you at the moment. I suppose the clearest way to see if pmrgca pains would be to try pred. At least you would know and get pain relief. Good luck to us both!!🌻

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Thank you, I think we need it. Isn't it strange that the exhaustion that hits you like a steam roller going over you several times doesn't lead to sleep, never mind restful sleep! So it just doesn't get any better😩. Enough moaning for one day, I'm going to bed now in the hope of a little sleep. Nice talking to you. J

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NOTHING replaces pred in GCA except tocilizumab/Actemra - the add-ons are in the hope of potentiating the effect of the pred so you get more effect for the same dose.

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Amen

Edward

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Hi Nevb

Sorry to say I think it could be your PMR raising it’s ugly head again.

I don’t think we’re ever 100% sure it’s really gone, despite the apparent lack of symptoms or raised markers. We hope it has, but must be prepared in case it hasn’t.

Having said that, it does take your body some time to really get back to normal after Pred, plus of course, during that time you have aged, your muscles have weakened etc.

Are the painkillers helping? If not, then maybe a trial of steroids is called for.

Please keep us informed, and good luck with Rheumy appt.

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O Yes Nevb, it is a pain in the ASS ( is that a decent thing to say? ) not knowing what the cause of the pain is. I stopped the first of februari, my gp did not want to give me Pred since Blood was Good. And the pain in the shoulders came back like you describe. I did not protest cause I am afraid of Pred and my vision went down the Hill will be operated on them in april. I first tried Bowen A very Nice person gave that, but no results. Now There is triggerpoints worked on and it suits me Well. My thinking is the cause might be the weakening of the muscles so I give it a try, and swim which seems to help. Hope you feel a bit better soon , one say onward and upwards is nt it?

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If zapain helps the pain it is probably not PMR although you could have PMR in addition to whatever the zapain is helping. PMR normally is active for at least two years, for it to go into submission after only six months would be very rare indeed. It is quite possible you still have it in spite of blood test results.

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6 months? I think Nevb has had it much longer than that.

(6 months OFF pred)

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Thanks, did not read the post properly!

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Thought so, easy done.

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Nevb. I suspect that if/when I get off of Pred, the PMR will leave traces, scars, tissue changes that will continue to cause some aches and pains....for at least two years. Why two years, a family joke, attributed to my mother who said everything like this always takes two years. She lived to 100 and towards the end she'd remind us she didn't have two years anymore to outlive whatever it was that might be ailing. I'm 76, but I doubt I'll completely outlive this PMR condition.

I recently read an abstract posted on the forum. They did ultrasounds of people with PMR who have titrated off of Pred and then have relapsed. They found LVV.

"In our study, the relationship between PMR relapse and concomitant “silence” LVV has been evaluated. More than one-third of PMR patients who relapsed had a co-existing LVV. Thus, we recommend the use of vascular US in all patients with PMR suffering a relapse to investigate the possible co-existence of LVV." acrabstracts.org/abstract/p...

This might be a route for you. I don't think your problems sound like a flare. Perhaps because they sound so much like what I have and haven't gotten diagnosed, not really. Sometimes my osteopath has been able to manipulate the shoulder and relieve the pain. But it doesn't take much to set it off again.

I find a heating pad to be very helpful.

If you get a definitive answer, please let us know.

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Most people don't know what LVV is so google says Large Vessel Vasculitis.

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My understanding is that GCA and LVV are basically the same thing. The term GCA is usually applied when it affects cranial/in the head arteries. LVV for ex-cranial/not in the head arteries. The temporal artery is relatively easy to sample/biopsy, so is an ‘easier’ diagnosis. There are not going to be biopsies of aortas any time soon! Which is where I the newer imaging techniques come in. That said, just because someone is diagnosed with GCA doesn’t mean they don’t have inflammation in other areas of the body and have LVV as well. But the higher doses of pred deal with both. Having a ‘just’ PMR diagnosis IMO is more worrying as screening for LVV is simply not done routinely, and as Hindags points out above, maybe a third of people with PMR have undiscovered LVV.

Is it Sweden where they treat PMR with GCA doses of pred? Have read it somewhere, can’t be sure it is Sweden.

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GCA is an LVV, not all LVVs are GCA. GCA can affect any artery with an elastic component to the artery wall - but it isn't often demonstrated because it needs a biopsy. Which, as you say, obviously isn't that easy!

You'll like this and it isn't a bad read. The Fig 1 diagram speaks for itself.

academic.oup.com/rheumatolo...

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Thanks for link, have read before, but will read again. Beginning to think I’m getting some GCA/LVV symptoms....or is it lowered steroids? Of course I can’t get to see useless GP for two and half weeks.

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Why? What's up?

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Intermittent axilla pains, mostly left, but right as well. Headache, every evening, sides of head, plus shooting pains through temple. Aching eyes usually evenings. No visual symptoms, apart from some blurriness which is not new. Dropped from 10 to 9mg Monday, now day 6, but had some of this on 10. Cough, productive, was yellow but had ABs for that, may just be the last lickings. Bit snuffly, blocked nose. Some around the ear pain. R hip/buttock which had been a nuisance since December flare seems somewhat improved.

Am watching and waiting. Will act if anything visual. Pondering increasing pred, but reluctant. Think I should have rheum appt soon, waiting for appt.

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Can you not call the rheumatology unit and speak to a rheumatology specialist nurse? Or turn up at the GP and inform them you require an EMERGENCY appointment which means same day. It really isn't good enough not having easier access to the GP for acute on chronic illness.

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The nurse I was given the number for is no longer in post. I did track down another a few months back, managed to speak to her, but never got a call back with an answer. Might try again Monday.

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Department secretary then...

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Some of us have noted alarmingly enlarged veins in arms with PMR. As these are veins, not arteries, it's pretty much dismissed as unimportant. However, is it possible that Large Vessel (note, they don't say Artery) Vasculitis could be the cause of this apparent distention of veins?

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Thanks for all the replies, I,m certainly going to ask the doctor if that's who I see next month about the possibility of going back on Prednisolone to see if it will ease my symptoms .

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Hi you are in the same boat as me. After being treated for PMR for nearly 3 yrs, my Dr says as the preds aren't helping the pain it isn't PMR. I am reducing 1mg a month, but the pain in my shoulder/arm is really bad & my leg from hip to knee. Had x ray & it's arthritis so I assume that's in my shoulder also.

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"my Dr says as the preds aren't helping the pain it isn't PMR"

Had that been the case at the beginning then I could have some sympathy for his opinion. However, now he is almost certainly wrong: you are no longer on an adequate dose to manage the pain. The initial dose cures nothing and nor does the continuing pred regime. It MANAGES the inflammation that is created every morning by inflammatory substances being shed in the body due to the underlying autoimmune disorder that causes the symptoms we call PMR. You are never reducing relentlessly to zero pred, you are tapering to find the lowest dose that gives the same result as the starting dose did. Any persistent increase or worsening of pain is a sign you have overshot the mark and you go back to the last dose that worked and wait a couple of months before trying a very small drop.

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All of your symptoms mimic PMR. I am down to 3mg prednisone daily.

Still get some of the same pain as you but not every day. Sleeping is difficult some nights but the higher doses of Prednisone have other negative effects

So I compromise. Probably return to low dose prednisone would help ?

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The pain I have these days in right bicep/shoulder is new since PMR. I don't think it is from PMR at this time because Tylenol really helps and there is no stiffness, just pain when I move it wrong or overuse it. Sldo very low (for me) markers and while I don't have the get up and go I had a year and a half ago bofoe I was diagnosed, I just don't feel sick as I did at diagnosis. So I'm continuing with my 6-5 38 day taper, day #5.

If my thinking about this and my plan seem wrong, someone please set me straight!

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I don't know if tylenol would help my shoulder pain - but it is often due to myofascial pain syndrome making the muscles spasm. The physio had another good go at them again today - and says it often happens in PMR.

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My physical therapist says it is bursitis. She says time and very gentle movement to keep mobility going. She also says two years!!!

I think I might have given this to myself trying too hard to stay fit when I was taking more Pred. and feeling my body hanging together by elastic strings. I realize that that feeling is largely gone. Hurrah!

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Hmmm - I'm less convinced that bursitis in PMR will resolve with time and movement. It is due to the inflammation of the PMR - not a mechanical problem.

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