I had a hospital appointment to see a “Rheumatologist” (ST4 trainee I believe) at the beginning of last month and received the results today.
Great news, my PMR is in remission as my CRP and ESR are normal (apparently they have been since 2019), just a shame no one told my body.
I started on 20mg Prednisolone in 2018 and in 5 hours I couldn’t believe the massive transformation.
I tapered down month by month to 1mg thinking the goal was to get of steroids, it was never easy and eventually had to admit defeat due to pain levels, I went up to 4mg, down to 3mg and back up to 4mg. I have since had to go up to 6mg, fingers crossed this level looks like it is working. He wants to reduce the Prednisolone slowly to zero as there are other solutions such as Tramadol to control pain levels that could be osteoarthritis. I told him I was able to distinguish between muscle and joint pain but ha ho, the blood tests can’t lie, can they?
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TheGreatPretender
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I think you perhaps know that 20% of patients do not show inflammation in their blood test results. Particularly when taking Pred.Symptoms are a far better indicator. In addition, traditional pain killers do not help PMR pain unfortunately- only Pred does, as you’ve discovered. Have a browse on FAQs here, for more reliable information.
If you are taking steroids and they are working properly of course your inflammation markers will be normal. You don't know your PMR is in remission until you stop taking the steroids I am afraid. If he thinks Tramadol will help PMR he is in cloud cuckoo land. Personally I would prefer steroids to Tramadol. I do hope you find you are in remission, but don't be disappointed if your ‘rheumatologist’ is incorrect.
Goodness Me - do they ever cease toAmaze?!? Of course your bloods will be ‘Normal’ if you are on the correct dose of Pred as that will keep the inflammation at bay…..
I saw an Orthopod about my shoulder & he said ‘You don’t walk like you have PMR!’……
Well, apart from the fact that 20% NEVER have raised markers (or at least, out of normal range, they may be raised for them personally) if you are on enough pred OF COURSE the markers should be normal - if they aren't then either it isn't PMR you have or (more likely) you aren't on enough pred to manage the inflammation). That however does NOT mean the PMR is "cured" - the underlying actual autoimmune cause of the symptoms we call PMR is very probably still active.
The level of non-information on the part of doctors over PMR never ceases to amaze me. And as piglette says - if he thinks Tramadol will deal with PMR pain and stiffness he is in a parallel universe. And I do wonder why tramadol is considered preferable to a low dose of pred ...
That is something that comes under the general autoimmune research - you need to know the mechanism before you can work out a cure and there is very little evidence about that sort of thing. The tocilizumab/Actemra mechanism stops the production of one of the inflammatory substances that causes GCA inflammation and in GCA it seems to induce remission as a result for half of patients. PMR isn't yet so clear cut.
Eh? I don’t want to be a doomsayer but 6mg is still plenty enough to keep low level autoimmune activity indivisible to blood tests. Remission can’t be declared until someone is off Pred without symptoms for a good few weeks or months. Not sure sure why you have had to go up to 6mg, adrenal reasons? Pain? This doc should write a paper on his secret to knowing when someone is in remission before they are off Pred; they will become renowned.
Everything has been covered, except for one thing - there is not cure for either PMR and/or GCA. I just wish there was. Your medic sounds as though he lives in cloud cuckoo land and no even in the 'parallel universe' that PMRpro mentions.
Hi,This rheumatologist sounds like the one I saw a year and a half ago, he told my husband GCA clears up in a year. Well I’ve now had it 2 years, so where he got that from I’ve no idea.
As for tramadol, i would never take this, it makes me very nauseous and very ill. The drug is also very addictive to some people.
Please ignore him, take what medication you need to help, if pred works then carry on with it.
You need a rheumatologist who knows what they're doing! Arm yourself with info from this forum and then go find another one, or go back and challenge this one.
111 gave me tramadol for GCA. Then I had to take antiemetics, so you can imagine what fun it was, and it didn't do a thing. My inflaammation markers are normal so far as I know, but then I'm on a shedload of meds.But 6mg isn't half bad!
Thanks for all the replies and support. I feel so upset and angry at the way I have been treated by "specialists". I have drafted a letter, it will change but I do feel better for doing it. First for my GP then to the consultant and hospital. Here are my first thoughts.
On reading the examination it makes me wonder if my notes have been mixed up with someone else as I have a differing memory of it.
I have no medical training so please forgive me if I make mistakes.
Examination:
My blood pressure was taken by a nurse with a machine on the upper arm not at the radial arteries.
As I was fully dressed at all times during my examination how did he arrive at the diagnosis of crepitus in both knees? Also at the time I was suffering from extreme pain and explained to him my left hip joint, buttock, front and rear of my thigh were causing me great concern and had been for a number of months so I find incredulous that ‘There was no synovitis on examination today’. Could that be because he made no attempt to investigate?
Summary and Plan:
He explained my problems were not caused by polymyalgia rheumatica as my blood tests had shown that the ‘inflammatory markers were normal’. At this point I couldn’t believe what I was hearing and found it extremely distressing.
Here was a rheumatologist trying to tell me it isn’t possible to have PMR if it doesn’t show up in CRP and ESR tests. As he also states’ ‘that CRP has been less than 10 since January20219’ 2019 I imagine, and ESR ’has been normal since October 2017’, is he really saying my surgery have been treating me since then for the wrong problem?
What is more concerning his consultant Dr _____ was in agreement?
May I humbly suggest If they think that NICE are misleading people with their assessment of PMR that they should offer them a paper with their knowledge over riding this from their site that states
• A working diagnosis of PMR should be made from a combination of the following:
o Presence of core features of the condition.
o Exclusion of differential diagnoses, such as rheumatoid arthritis and fibromyalgia.
o A positive response to oral corticosteroids within a week.
o Normalization of inflammatory markers within 4 weeks.
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