I finally got my G.P to increase my steroids to 15mg with reluctance and a referral to Rheumatologist. He is unclear about this being PMR. Hey Ho.
Anyway, this did improve the pain and although not completely pain-free was acceptable. I knew he would never agree to a higher dose so just grateful for his agreement for the 15mg.
On his advice to reduce it to 13mg after 3 weeks, I stretched it to 4. Now on 13mg, i am experiencing increased pain in my right shoulder and right arm which is waking me up at night. Before treatment, I was debilitated by pain all over but remember my right arm being the most severe.
I am also starting to doubt that this is PMR as surely the inflammation if not treated would be wider spread therefore my pain would not just return to my right arm & shoulder. I want to up my steroids back to 15mg to get rid of this pain but feel so guilty that if I do I am self-treating a condition the medical team does not 100% believe I have.
I now have my rheumatologist appointment through for the 18th March which has been super quick and now worrying that this will confirm it is not PMR which i know will be a definite rather than the confused G.P who just doesn't know. if that happens and it is not PMR I am scared of the alternative and surely that's untreated pain.
This doesnt get any easier as it controls every day even when the pain is under control!
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Cooper02
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Well from the your initial reaction to Pred a few months ago, would say it's very likely PMR.
But think the trouble started after that, you were reduced too quickly, and then a locum muddied the waters with his attitude on Pred. So what Pred you did have wasn't allowed enough time [or at a high enough dose] to get your PMR under control.
The fact that you have got an appointment with Rheumy so quickly is good, and hopefully he will confirm it's PMR [in the nicest way if you know what I mean] and will give you a plan and enough Pred to help. Or if it's not PMR, then an alternative diagnosis.
I know it's difficult in the meantime...but [although it's not helping your pain] many have been in similar situation - and at least you have a Rheumy appointment.
Thank you. I agree that i am lucky to have an appointment so quickly. I will just have to hope he listens to my journey so far and relates his diagnosis to where it all started and the miracle of steroid treatment which i thought was the key to confirming PMR.
They can't confirm one way or the other it is definitely PMR - it is a balance of probability on the basis of signs, symptoms and response to pred and ruling out other possibilities. What we know of your history, we'd say there is a very high chance it is PMR and should be managed as such unless the rheumy can identify another possible answer for the symptoms. But even rheumies get a PMR diagnosis wrong - there is no definitive test and a lot depends on their beliefs about PMR. They aren't always correct. Sorry! What they will struggle to do with you is claim that it is fibromyalgia - pred doesn't have the same effect you have had if it is fibro.
If you get to too low a dose because of poor management, what tends to happen is that some areas with less accumulated inflammation have more capacity to deal with a return because they had a good "springclean". Other areas that were worse are still a bit "grubby" and the inflammation builds up to a level that is noticeable much more easily. PMR loves to target your weak spots. That could well account for one shoulder being worse. Or you might have hurt it a bit, PMR doesn't do the soft tissues any good at all.
If it doesn't get worse, try and stick it out. If it is worsening - make copious notes about dose and symptoms. It might help. And don't do too much because you feel better.
Thank you, that makes sense about my right arm being my weak spot. It was the severe pain in that arm that finally took me to the doctors. Up to then i was doing a good job of ignoring and living with pain but at the same time had a lot of other stuff going on. Its also my dominant arm so used more. Can i ask if the occasional dose of ibuprofen is ok to take. I try paracetamol and it is not effective. When i google it suggests i need to talk to my G.P.
I use occasional doses of ibuprofen as it is the only thing that works for some things for me and paracetamol is dead loss orally. If my rheumy thinks I need NSAIDs more than that then he insists on taking stomach protection, here that tends to mean a PPI for it to be prescribed and I really don't like the side effects! Taking the ibuprofen with food helps.
If it’s just a point of protection I already take a PPI which the G.P insisted I start with the steroids. Luckily I don’t have any side effects from them or the Pred.
I just think the occasional ibuprofen would help especially when I am deliberating if it’s the PMR or I have just over done it.
I agree and that was never more clear when my mother was in excruciating pain in hospital with a L2 fracture to her spine and they wouldn’t give NSAID’s
Sometimes I think they need to experience it themselves. The doctor in the pain clinic here had a hissy fit when I had got pain under control with a single relatively low dose of ibuprofen a day. All she does is say no!! The alternative - which I knew would work -was a steroid injection. No, Luckily my rheumy will do them and I am currently almost pain-free for the first time for nearly two years - with NO painkillers! Should have gone to him sooner.
That’s good news that you are pain free. The problem I believe is that someone’s pain is not visual to them therefore they cannot justify or give the rationale for prescribing therefore they are always worried about the potential consequences to themselves.
Possibly - I have come to the conclusion that a good rheumy is actually the best person to appreciate our pain. I participated in a study here where they wanted to look at why the pain assessment the PMR patient gives often doesn't correlate with the disease activity they assess in physical examination. I tried to explain that they are using a fairly standard RA examination technique but in PMR we don't HAVE painful joints - it is our muscles that hurt and it is often a constant low grade level of pain that affects all we do. Because it is always there, we maybe assess it with a higher number than we might sharp spikes of pain that we know will go away as quickly as they came.
I do know that the pain I was having affected me a lot - if I go out to walk, the pain increases and hangs around a long time when I get home - and even getting up to go to the loo is a torture so you avoid doing that. But that doesn't seem to register.
At my last G.P visit he gave me a ‘Clinical Fibromialgia Diagnostic Criteria’ questionnaire to complete but to be honest I could see that if I completed it would suggest Fibro but also I am sure it meets the criteria for PMR so didn’t complete it.
I am trying to be hopeful about my rheumatologist appointment as least they will have more knowledge and I will then need to trust there evaluation as surely after that there will be nowhere else to go.
I remember struggling everyday even getting out of bed and going downstairs but I didn’t complain as I thought it was getting older, overweight ect, or that was the general consensus. I don’t want to go back to that so I will put up a good fight and share what I have learned so far and hopefully convince the rheumatologist that he cannot really convince me it’s not PMR.
There is one pivotal criterium to distinguish between PMR and fibro - because there is a massive overlap in the symptoms as I found when I was trying to work out what I had. There are trigger points in myofascial pain syndrome too - and they tend to overlap with the ones claimed to be identifying fibro. But 6 hours after taking 15mg pred, my pain and stiffness was 80% improved. QED: NOT fibro,
I got the "age" card from the GP. At 51 and at the gym most days!
As you have mentioned Myofascial syndrome can you clarify if PMR equally presents as feeling pain on pressing trigger points. If i touch my arms along the muscle it hurts to touch. I can track the tenderness down my arm.
I had two different sensations of "tender to touch", There was a very diffuse, widespread, ouch feeling when running your hands over a larger muscle and a much more localised pain over knots of muscle fibres or trigger points. The first I think is due to inflamed fascia - the transparent skin you see in joints of meat around muscles - the second is concentrations of the cytokines in inflammed muscle fibres which can be felt as knots in the large muscle. In both, if you can cope with a good massage, the cytokines will be released from the site they are occupying, into the system and eventually be flushed from the body through the kidneys, In between you may well feel as if you are flaring badly as the systemic effect is felt.
Also bursitis of the shoulder and hip often go cap in hand with PMR so you may have a bit of that too, and it causes referred pain down the arm or leg. And/Or you might have shoulder impingement of some kind. In other words there might be several things going on at the same time.
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