I was diagnosed with PMR 3 years ago by GP. Blood test did not show PMR.I was Prescribed 15mg of Prednisilone and the pains in my shoulders and thighs disappeared. After 2 years my Blood pressure rose to 200/96 and was told to cut down the steroids gradually to zero. The pains returned. Rhematologist says I don't have PMR but osteo arthritis and prescribed Amitriptoline 25mg at night to help me sleep and co codamol during the day. The pain during the night interrups my sleep . I am very stiff and tired in the morning which improves as the day goes on but the pain in my shoulders is still there with slight relief from taking Co Codamol tablets. Rhematologist says steroid will relive any pain but won't help in my case.I am disillusioned where to go next to get relief . Do I go back on steroids ?
PMR: I was diagnosed with PMR 3 years ago by GP... - PMRGCAuk
PMR
Hi,
A couple of points -
Blood doesn't “show” PMR as such - all it shows is raised inflammation in the body.
Up to 20% of patients with PMR don’t have raised markers - symptoms are the key, and the reaction of those symptoms to the steroids. So from that I would say you have/had PMR.
What dose were you on at 2 years in when BP high ( it is a well know side effect of Pred)?
Normal action is to prescribe medication to control high BP if lifestyle changes don’t. Were you offered advice or medication? It’s unusual to take the action you were told to do.
What does the Rheumy base his diagnosis of OA on, and why dismiss PMR?
Personally I think you need a second opinion.....and GP sounds more clued up than Rheumy.
“Rhematologist says steroid will relive any pain but won't help in my case.” - doesn’t make sense, it either relieves any pain or it doesn't!
I was prescribed 3 different blood pressure pills to take in the morning. I was on 15mg prednisilone at the time. Blood pressure normal now still taking the pills. Have had an appointment with the Rheumatologist cancelled twice. Due to Covid 19 they cannot say when the next appointment will be. Meantime I am getting nowhere . Have tried Tumeric and CBD oil with no improvement. I think prsonally I should go back on to taking steroids to get relief. Due to Covid GP's are only conducting telephone appointments for urgent cases only. C'est la vie.
Ok,
So had you gone down and then back up to 15mg? If so, how did you taper?
Unfortunately I doubt if turmeric or CBD oil will do much, if anything - as you know Pred is the one for PMR.
As your BP is now controlled perhaps another trial of Pred would be appropriate.
GPs really should be getting back to F2F appointments now, I’m tge sane as you trying to get a steroid injection fir shoulder Arthritis - very frustrating.
Does your surgery have eConnect facility? - look on website - you can email GPs and then maybe ask the question about trialling Pred again.
I was told to taper by 1mg per week from 8mg down to 1mg but I told the GP
that the pain returned. They then prescribed Paraceetemol which you can't take for prolonged period. So that's when I started on Co Codamol which creates another problem constipation so more pills to counter act that . To further complicate the problem at our GP practice there has been a turnover in Doctors so you don't speak to the same Doctor every call . I think I will do as you suggest contact my main GP by email to ask him for a tri aling of prednisolone again
I’ve been taking paracetamol for more years than I can recall - and still standing!
Good luck with email!
Finally managed to get a telephone appointment with my main GP who was very sympathetic and agreed that I have a flare up of PMR and I should go back on to steroids taking 10mg per day. The result after 2 days was great still a little pain and stiffness. Mentally I feel better and happier. If the pain don't completely go away I may consider increasing the prednisolone by 1mg at a time to see if there is an improvement. GP says to reduce one of the BP tablets Lisindopril to 2 per day as it increase Tinnitus if you have it which I do.
So onwards and upwards. I am very grateful for this website and the information received from other sufferers .
GPs should NOT be restricting appointments to emergencies only. That is what creates emergencies. But if this is still the same GP who put you on 15mg pred and left you there (is that what you meant?) then you may be better not seeing them. You should have had the dose tapered slowly after being on 15mg for 4-6 weeks until you found the lowest dose that gave the same result as the starting dose.
This is an effective approach and tapering schedule used by a group of rheumatologists:
rcpe.ac.uk/sites/default/fi...
DL has said everything else I'd have said.
I fear though you have drawn the short straw with the rheumy. Because he is wrong - one of the reasons for trying the pred test described in the paper I gave the link for is that only PMR really responds to moderate dose pred so fast - yes, other things may respond but not as fast or as well as PMR. When the pain doesn't respond well it is a signal to look further. But I have yet to meet OA that makes muscles hurt the way PMR does!
My current GP does not bother to come into the surgery at all since Covid, there have been some comments about it. I just argue with him on the phone about his obsession with bisphosphonates. He has transferred me to some special group now apparently. Perhaps he has given up the fight after over four years or there may be something worse round the corner!
I rang this afternoon about a steroid injection in my shoulder - to be told a phone triage appointment was all I could expect!
It was very difficult not to say -“ the GP must be bl@@dy clever if she can administer a steroid injection down the phone line”.
Still no blood tests unless for diabetes or similar - and my designated GP is now off until the end of August!
The mind boggles... and I’ve run out of expletives!
I don't think I'd have censored the comment. Does your GP do the injections?
She hasn’t as yet - but did indicate she was happy to. Did have one last December done by orthopaedic surgeon before he operated on other shoulder. So it’s getting a bit painful now! Never mind - as mother would say “worse things happen at sea” 😳
Was the one by the surgeon into the joint? Not sure I'd let a GP do that ... The shots I get are just local into the muscle though - Claudia can do them too if she feels like it!
No, just the 'normal' one into muscle.. previous GP used to do knee and hip before replacements quite successfully.
My hunch is tht you still have PMR and it stll creating problems. Unfortunately too many doctors think PMR miraculously goes away after 2 years but for many people that is not the case. You were on steroids, they were working. The only reason you were taken off them was because of the BP, not because the PMR had gone away. Sound like you need a review with a rheumatologist, hopefully not one who think PMR goes away after 2 years and also to find out wht else might be going on.
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