Following on from my previous post where I received so much advice and support which was so appreciated, thank you.
Unfortunately, today didn't go so well. Firstly my GP was not in the practice and I was passed on to a locum (Who i have seen before).
I was assertive and requested he support my decision to increase my pred to 15mg due to my increased pain. I told him about the support and advice I had received from experts who had so much knowledge and experience and I felt confident about treating my symptoms as a flare and my goal was to be out of pain. Unfortunately, he was not interested.
He read through my notes, talked to me about my symptoms and journey so far, and then told me that in his opinion I do not have PMR. I strongly disagreed and explained that when I started steroids I became pain-free almost immediately so how did he explain the remarkable response to the steroids? He explained that my pain is not bilateral, my hips should be affected and he would have expected my inflammatory markers to be normal whereas they were higher at my recent blood test, also adding my inflammatory markers have been raised since I was 40. hey ho who would have known, I didn't. I tried to explain that surely this recent increase was because i was having a flare and he said no, adding that the steroids could be masking something else. The only other diagnosis he could come up with was fibromyalgia. He went on to add that my doctor had recorded that he wasn't convinced that this was PMR either and was going to refer me to a rheumatologist.
He was adamant I should not increase my steroids explaining how dangerous they are, and said he was going to add to my notes that a Rheumatology appointment was the only option, to stay on the current dose and see my doctor next week to discuss the referral and his plan for managing the steroids. My guess is he is going to suggest reducing them.
I have been very upset since this encounter and don't know what to think anymore. Having PMR is the only thing that made any sense and the only condition I have now learned that I may be able to control.
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Cooper02
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Thank you Merryfield. I felt pain all over before commencing treatment but predominantly the pain was worse in my right side and it had got to the point of being severe in my right arm where i couldn't sleep at night and physically had to lift my arm with my other arm to try and relieve the burning pain. Its amazing that steroids took all this away so quickly so cant believe its not PMR
Fibromyalgia does not respond to steroids. Rapid response to low/medium dose pred is one of the diagnostic tools used to confirm PMR. Lab results in PMR are useful but not definitive. Symptoms rule.
Sigh. I'm so sorry you've had to put up with dealing with such an ill-informed person.
Thank you Heron. The doctor said that Fibro would have responded initially as there was definitely inflammation in my body. i did question this but he wasn't taking on my argument and stuck by his guns. I will try again next week with my own doc.
If there was inflammation - it wasn't fibro, It isn't an inflammatory condition - it is a fault with signal processing in the neural system so pain is falsely perceived.
There is starting to be a suspicion that fibro may be autoimmune and that inflammatory conditions MAY contribute to fibro developing - but there is no strong evidence of that
Oh dear Cooper02, so none of us have it after all! 🤔
Seriously I am sorry for this belittling experience. Most of us have had at least one. Where do you live? Perhaps one of us can recommend a Rheumatologist that knows about our diseases.
Hello Copper02, sorry you have been treated this way. Maybe getting an appointment to see a rheumatologist could be a positive thing . I have just been diagnosed with PMR finding it hard to accept , asked if I could see a rheumatologist before starting steroids, doctor refused ! Good luck, take care , hope you feel well again soon 🤗
At the start my GP said he was able to follow protocol for PMR and a referral was not needed at that stage. My first response to pred was perfect and now its all change because i have stepped outside what his protocol advised by being in pain
First, as others have already advised, fibromyalgia does not respond to steroids.
During the 4½yrs I've been living with PMR, I've learnt that although there are diagnostic 'pointers' and criteria used to aid an accurate diagnosis, we can all be very different in how we manifest, react & respond to both the condition and the medication we're prescribed.
Both we the patients and medical practitioners need to keep an open mind and be receptive to what can sometimes seem a diversion from 'the norm'.
Although there will be 'specifics' of the condition that we'll all have in common, there will also be some aspects that will vary from person to person
This GP clearly is trying to do what he perceives to be the right thing, by steering you away from steroids, but it seems that like many others, he just doesn't have the knowledge & experience required to make a truly informed decision.
It's true that PMR can be very challenging to diagnose and its also true that steroids can mask other conditions that may be causing the pain & accompanying symptoms.
However, just as HeronNS said, it's also true that PMR can not be diagnosed from tests alone...... they merely support the information that the symptoms being experienced reveal.
Prof Dasgupta (leading authority on pmr/GCA) made it clear to me, that a patients symptoms were the key to a diagnosis and not the tests alone.
I think you probably would definitely benefit from seeing a rheumatologist, but it's a shame you're not able to alleviate your current pain in the meantime.
I'm not a doctor and although I am experienced in managing & dealing with my own PMR journey I'm not in a position to advise you by suggesting you should maybe increase your pred dose.
Whatever happens, I truly hope you finally reach a satisfactory outcome....and well done on speaking up for yourself. Its so important to voice our concerns and to 'question' advice or information we may disagree with.
Thank you Kendrew. I will keep battling through with my mission to make my G.P listen and i will welcome the referral to the Rheumatologist but i will also make him understand that he should have the shared goal to eliminate my pain. Going back to 15mg should not be such a problem as i am on them anyway and what harm is a few more milligrams going to do except hopefully work
Many of us here on the forum do indeed take charge of monitoring and controlling our steroid dose, but we're all very aware of the importance of educating ourselves fully about both our condition and our medication first.
Steroids are most definitely a medication that if not fully understood or respected, will most certainly result in some serious health consequences so its important to try not to flit up and down doses repeatedly and to keep an eye on your cumulative dose as well as your actual daily dose. Both are significant and relevant.
That said, steroids are the only weapon in our arsenal of tools that currently work in combating this condition.
I regularly say that they are our allay...not our enemy....in fighting this condition...... but only when a well informed decision can be made.
You clearly need something to relieve your pain but only you can know what is the right thing to do.
Sorry to hear this….and what a very upsetting experience… do hope your usual GP will be much more understanding at next appointment. Getting a rheumatology appointment be a good idea, but through the NHS it isn’t likely to be very quick.
See what happens next week, and then perhaps, as suggested, a private appointment may be worth trying.
I will try again next week with my GP and accept my refferal but my husband did suggest trying to get a private appointment so maybe that's an option especially if my GP doesnt help me with the pain
Oh dear! I was absolutely speechless reading your post - almost unbelievable, and I am so sorry for you. As others have said prednisolone doesn’t touch fibro, so where is he coming from?
Also, my pmr was initially just in my right upper arm, though it did spread later, and I never had any hip pain, just up the back of my thighs. I had over seven years on pred, but no issues with side effects, although maybe I was a lucky one.
I really hope you can get this sorted, either via your GP, or a Rheumatologist.
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