Finally, i had my appointment with a Rheumatologist consultant.
I went through my history of pain, I was initially diagnosed with PMR in sept last year by G.P who started me on 15mg Prednisolone, and a miracle happened. I also explained that unfortunately, I have been unable to successfully reduce my dose over the past months due to increasing pain when I tried.
He answered that he does not believe I have PMR and that the reason for my success with prednisolone is that it is acting as a glorified painkiller. He thinks it is Fibromyalgia but wants to do some tests to rule out other possible conditions. After a thorough examination and pressing on pressure points that were very painful to touch, I was shocked as never knew these areas were painful. My muscles have been my focus as this had caused me the most pain.
I am now waiting for a letter from him once he has the test results. If he sticks to his diagnosis of Fibromyalgia he made it clear that he will reduce my steroids as quickly as he can and substitute them with either Pregabalin or Gabapentin. When I was upset and concerned that my pain levels would increase and I would be going back to where I was 6 months ago he didn't deny this would happen and said the transition would probably be rough.
I am confused and worried. Apart from the steroids working so rapidly at first my CRP &ESR were also raised which I didn't think happened in Fibromyalgia.
How can I debate his opinion and clinical judgment? It's in his hands it seems.
Deep down I still believe it is PMR as I thought my initial response to the steroids was key to the diagnosis.
Sorry but just venting and possibly feeling a bit sorry for myself
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Cooper02
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My very first Rheumatologist confused my like that, with the default diagnosis of fibro in spite of not having the pain points. Fortunately, our good fairy PMRPro stepped in and pointed me towards Dr Sarah Mackie. Fibro has never been mentioned again but PMR and then GCA/LVV has and she’s been brilliant ( Leeds).
This is my understanding , I cant understand why steroids are not main treatment for fibro if trialled to rule something in or out and there is improvement and it is key to diagnosis , I am concerned for cooper02 in this position. My understanding is that there is no inflammation in fibro too. Its there any proof anywhere that steroids will have zero effect on fibro as this is a contention. Also one rheumatologist when I was diagnosed with fibro but furthering symptoms said you can have other diagnosis with fibromyalgia you know , fibro is not always alone.🤷♀️
Hi, I can only wait for his letter and find out what’s his diagnosis. He did not only refer to me being on a glorified pain killer but also said ‘I bet you have loads of energy as well’. I wish! He was a nice man and I felt that he was thorough but I think he already made up his mind before I entered the room that it’s not PMR and getting me off steroids was the goal
Still feeling quite down. Got blood results back and white blood count raised so not sure what that’s about. Some other abnormalities so just need to wait.
Of course you are down that’s how we feel when we feel we not only fight health but those in place to help us.we need docs to work WITH us, to hear us too. I was handed a sheet on fibro sat ready on desk before even we spoke it’s demoralising. I have no diagnosis but whatever I here progressed until steroids and I was hypothyroid but last test in normal range but I was never medicated despite tsh 4.7 .
Please let us know how you get on and don’t be pushed around if you don’t agree it’s fitting. I don’t like his remarks 🤔 and wouldn’t accept bullying if for compliance. Steroids help for a reason and as they’re not prescribed for fibro then I just don’t see how they can help like they have. I’d ask his reasoning for doubting pmr 🤷♀️ best wishes and good luck let us know result 🙏
On steroids 12 years, had scan to show no inflammation, so must now be Fibromyalgia. At 5 mg still have pain and fatigue. Being housebound for weeks at a time, upped pred by 2mg to go to afternoon tea at a restaurant, treat from grandadaughter. Felt so much better just 2 mg more, how come then if no inflammation and it’s Fibromyalgia. Such a painful mystery! Going to a pain clinic “seminar” tomorrow will be asking questions!
Keep meaning to mention nuigini who has had great difficulty with reducing her pred dose and has complained of concrete legs for years. She has just had a totally different potential diagnosis - I wonder what Max would think of it.
this raises another contention, inflammation. I had a few times inflammation on bloods other times not yet presenting with obvious inflammation so do not understand inflammation markers.personally I was asked if anyone had mentioned pmr by dermy , I said no and that was end of that. I had 7 day high dose steroids that helped alleviate but ongoing. I had severe problems at one point lost hair, very cola coloured urine could barely walk ,and went on for a while. as hair started returning had thyroid test privately and tsh 4.7. thyroid tsh recently since steroids 2.4. Also have fluctuating ptosis undiagnosed . Fibro is a great mystery and I fear it as diagnosis when not fitting and with first doctors not believing in it, now answer for all🤷♀️I believe it often comes alongside other diagnosis and understand this more but not the extension of criteria as has happened and I wonder if this is my case as diagnosed with fibro for years then sudden progressive systemic symptoms only helped by steroids.
do you know what questions you will be asking? I will be interested and in answers you receive.
cooper02 has every reason to doubt the consultant and she knows her own body we all do , and I do not see fibro as a definitive answer at any time if not fitting and given the help of steroids 🤷♀️ I do not see why one diagnosis would rule out the other and wish I could help in her debate but have the same problem. all I know is rheumy told me you can have more than just fibro and of course we all know you can have many diagnosis at one time.
exactly . yet when my arm and thigh had hard temp swellings said not fibro then was again, my rashes were not fibro but I was told then the diagnosis was fibro. why would they ask if anyones ever mentioned pmr to me (dermy)🤷♀️.
I give up with uk healthcare for want of a better word.
Well I managed to stay awake listening to all the spiel! 10 of us in a small room...one and half hours......first was a pschycologist, then a physio, then nurse talking about medication, if we had been able to ask questions it would have been better....but no, we had 5 minute break to go to the loo....so pretty much a waste of time for me, nothing I don't already know....they will be ringing up in 2weeks for a 20 min discussion....I will be saying it would have been helpful if we could have asked questions....Will now ring my GP and also make an appointment for Rheumatologist......
One of my sister's GP's surgery is at the health centre where I went, both times in last fortnight I have past the reception, it is in the dark with a notice......."shortage of staff, no surgery" Oh dear.....
sorry for you its complicated when we rely on getting the right answers and such confusion.
As sheffieldjane I now am given default diagnosis of fibro in spite of not having pain points and despite many symptoms not referring to fibro..
I wonder why everyone with fibro is not diagnosed steroids if they are a glorified painkiller. I had out of hand inflammation which a high dose of steroids helped alleviate much but not cure and still they say fibro 🤷♀️
feel free to vent , ive learned how frustrating it can be. 🤗
I would always rely on that deep knowing and intuition. You describe this as "deep down". I have managed very well with my lovely GP (who I really only see for prescription requests) and this wonderful site. I have seen a few rheumies over the 7 years I have had PMR and my visit to the latest one (over 2 years ago) was an expensive joke. She told me that PMR only lasts for 2 years which is incredibly OLD thinking! They may have a brass plaque and charge like a wounded bull but some of them know very little about PMR......
I have both PMR & Fibro, it can happen. There are a few of us on this site. Pressing pain points in specific places is the way I was diagnosed with Fibro. I had that done 4 times by 4 different rheumies over a period of 15 years. I cannot explain why, but when I was put onto 15mg it stopped the new pains & symptoms of my PMR, but it also stopped all the Fibro pain! Above 12mg steroids stopped the pain of PMR, Fibro & OA (which was busy spreading in the background). I was in heaven!! I’d been in pain for 15 years, & now I was free of it. Below 12mg it all came back. Not immediately & all at one, of course. Followed by other diagnoses & new illnesses. Perhaps my Fibro went into remission for a while. I’ve never shared this as I’ve read here many times that steroids cannot help Fibro. But it seems a strange coincidence. You say the pressure points were reactive to the poking & pressing, but you hadn’t realised they were painful. In my history that has been the case each time I’m diagnosed. The last rheumy didn’t state I hadn’t had PMR for 4 years, but told me to get off steroids within 3 months. 1mg a month, from 5mg to zero. Gabapentin & Pregabalin are the standard drugs to help Fibro. Please watch for side effects if you take either. I was unable to take them. I hope you have PMR. Fibro is definitely worse for me than PMR. Happy to answer Fibro questions if you get a definite diagnosis, but please bear in mind a) his diagnosis & test method & your reaction sound correct for it & b) you could have both.
Hi there - I too had these problems and was in absolute agony - in so much pain - unable to turn over in bed without assistance and screaming in agony - absolute agony - difficulty walking - getting out of a car agony again - walking difficult just about to be in a wheelchair when I got some help - it was my thyroid hormone - unfortunately the tests they do today are not adequate to pick this up - but as I took the hormone it was as if warm water was going through my veins and muscles and pain was gone.
My dentist thought I may have hormone issues (due to the red rash I have under my chin), but she did say she wasn’t a Dr! My Dr checked my last four thyroid results & they were all good, so he was happy that it’s Dermatits/eczema. Whatever…I’m used to it now…last scar on forehead due to fireworks accident, moon face & overweight from steroids & red scar round front half of neck. That’s life! S x
Unfortunately I had to suffer for over 15 years with dreadful symptoms - over 100 - I had Ord's which means no goitre - but all thyroid issues are classified as Hashimoto's these days - with Ord's there is an antibody that stops the blood test showing there is a problem - I forget the mechanism at this point but eventually becoming so ill I had to go to Europe to get help - I was immediately given thyroid hormone - treating the symptoms rather than a blood test - there is a real problem with blood test only diagnosis in this country and the USA . Things are a lot better now within the private establishments but when I was trying to get help I went to most of the London endo departments and Harley Street and could not get help as in those days they would get struck off if they prescribed if the TSH level was not at a certain level.
That is shocking.....but I'm not surrprised. My sister has RA and underactive thyroid, she has been quite ill for several months, b lood tests.. "normal" We both think it's the thyroid, I have see n on forums for thyroid the struggle they have to delve further.....it's ridiculous an d sad to think we hate to be told blood test results.. "normal" The last thing we won't is a battle when feeling ill! Maybe she will have to go private....Thank you
I have just been made aware of a document that a Dr - won't mention his name but he has admitted that he was involved if not responsible for the blood test criteria being set as it is - he is very sorry and says it has blighted his career in his own mind - but no-one will listen to him to get things changed as he believes they should be. The Dr who set us all up to fail the blood test is now so sorry and I don't feel angry - science changes - he just did not expect the rules he set up to be absolutely set in stone - but they are. He has now retired but tried his best to put things right !
Yes well very serious issue if people are walking around ill because the medical profession are adhering to his criteria for diagnosis - but he is devastated that it has become such a blunt tool for what should be an easy way to diagnosis like they did 'in the old days' by listening to the patient and their symptoms.
sorry you had this I can relate to not being able to turn in bed or get out of car or chair easily and upstairs without breathlessness and not being able to stretch . I dont know the cause but steroids have helped but uk health cate seems to leave a lot to be desired and boxy. pleased you got help
I have looked up the side effects of Pregabalin and Gabapentin and the side effects look awful. I was lucky that I have had minimal side effects with steroids and they have certainly been my friend but hey ho.
My Rheumy suggested that he would start either/or at the same time as quickly reducing the steroids if Fibro was his concluded diagnosis.
I think I would rather go back to the original pain I had tbh then be medicated with medication I do not believe is the right treatment.
I think there are people who seem to react to drugs & always get the side effects, & im one of them!! I started Pregabalin whilst sick with a chest infection & in bed, couldn’t breathe, antibiotics not working etc etc. but the Pregabalin had very bad effects on my mind & thats never happened before. I looked up the drugs & found they are known to affect some people that way. I just think there should be a warning. But a lot of fibro sufferers take them & get a lot of help…much in the sane way as steroids help PMR! But it will be interesting to find out your conclusion from him! I don’t see a problem with starting them while reducing steroids unless you want to see which drug is causing which reaction!! Good luck, S x
My Rheumie quite clearly stated that steroids do not work with fibromyalgia and he wrote it in his letter to my GP practice as they were trying to inflict fibromyalgia on me. Good luck
your rheumy sounds like a good one then as I was on 60mg for a week after years of no treatment and years of unaddressed inflammation. My eye ptosis which still undiagnosed was only marginally helped for a short period but my rashes cleared slowly (except for blistery lumpy elbows and red and dry flares of face and chin but still get many of the other symptoms beforehand but weakness and especially on exertion, and inflammation affects me more than pain and I thought fibro was a pain thing. I am glad to have had the steroids when I did and the way it cleared my head was worth it alone. mine also progressed and I thought fibro not progressive 🤷♀️Paul did you get a different diagnosis after this?
Rheumie stated that I had a classic case of PMR. This now helps me with my GP practice. I don’t think it will be questioned again and I now have a very good and understanding GP who keeps an eye on me and is happy for me to self manage. A couple of years ago the senior partner told me I had to get off steroids! After a long journey where I had to pay to go private I finally had a diagnosis the senior partner could not argue with. I’ve been having some problems tapering below 10mgs even on the very slow method. When I mentioned this recently to my new GP she advised that I should not think of tapering at the moment and stay on 10 mgs for 3 months. It was so refreshing to have a GP who is so flexible and understanding.
its great to hear you now have a gp who works with you and who is understanding and obviously has some knowledge of pmr .hope all continues this route goes well
What is going on at present? They are fixated on anyone with these sort of symptoms having fibromyalgia. And that was absolute tripe - pred only acts as "as a glorified painkiller" when the underlying cause of the pain is inflammation - and in fibro it is NOT inflammation. You CAN have both, You can have fibro and other things. But when 15mg of pred achieves a minor miracle - it isn't fibro alone.
The trigger points used by many doctors in fibro overlap with trigger points in myofascial pain syndrome which often occurs in PMR. Before I got a diagnosis, I did the trigger point test. At least 11 of the 18 were positive and at the time that was accepted as diagnostic of fibro. But 15mg pred achieved well over 70% relief in under 6 hours. It was another 3 or 4 months before I was pain-free. The trigger points are now no longer criteria for a fibro diagnosis as they are so unreliable - see the link at the bottom of my reply.
I suspect that that may be a possibility, it isn't "just" PMR. However - the way you were started on and then tapered with pred was not ideal for a difficult presentation of PMR. I also got a miracle with 15mg pred but then struggled to reduce the dose below 12,5mg. It was over 4 years before I got reliably under 10mg. 15mg is the bottom end of the range for starting dose and if it is barely enough to control the daily dose of inflammation, then it leaves no buffer zone when it comes to tapering. Any underlying accumulated inflammation has to be cleared out - and 15mg is often not enough to do that in the time most doctors allow before starting to taper.
In some ways, I hope the dear doctor finds something else - because I really don't agree with his opinion it is fibro and that pred acts as a painkiller in fibro. Your GP is almost certainly going to agree with the rheumy as the "expert" so you have a problem. You need to discuss this with your GP and find out their views.
Where are you in the UK? And is a private opinion with a recommended rheumy an option?
Hi, I am in Cambridgeshire and I requested a referral to Addenbrooke’s as researched they were the best rheumatologist team. I also think that there maybe something else going on but the treatment for fibro is awful and if he decides it’s that even agreeing that there maybe secondary PMR I know steroids are still the meds to go. He did a pelvic X-ray and wants to do an MRI which he can’t do until I am down to 5mg steroids minimum.
Still waiting for his initial response and also now experiencing more pain again even on the 15mg but this now could be stress induced from his appointment.
Best theumy team for RA maybe - but PMR tends to be a special case that the more arrogant rheumies look down their nose at. No idea why they think that fibro bears any relation to PMR and is a "better" diagnosis except they can dismiss you as there is nothing they can do - problem solved ...
If a private second opinion is an option and you are willing to travel to the SW London area we can direct you to someone who IS good at PMR as well as other things and who LISTENS to the patient in front of him.
With fibro you get a book! They even gave me one after 12 years…because it’s a new book (it did have new photos on the cover). With PMR you get to have (well most patients do) follow up appointments & take up their time on something they 5hink can be handled at GP level. Though I do agree with that, if patients want to see a specialist why shouldn’t they. The only thing to discuss is tapering. Once that is concluded they can refer patients back to GP & it frees up appointments! Just a thought!
Works 2 ways - there are a lot of rheumies who get all iffy about PMR remaining in primary care. They want to keep it in their court - and then make it next to impossible to get ANY treatment when GPs are scared to do anything,
When you read the posts here I’m sorry to say I don’t read many good comments! If the patients got the help they need there wouldn’t be lots of posts each day! I realise people are less likely to say something good, & then have no question’s, maybe, but so many bad comments? Makes you wonder!
Makes me so mad when I hear stories like this. Fibromyalgia is neurological, PMR is inflammatory. Surely they know that? It also makes me wonder how many patients with PMR that these rheumatologists actually see. I certainly have a lot more confidence in the GP who originally diagnosed me than I do in either of the rheumatologists I saw. I've decided that I don't want to see another rheumatologist, unless I can see one who has a background in the treatment of PMR and/or GCA.
I had a very similar scenario as you. They are so scared of steroids that they are desperate for it to be fibromyalgia instead of PMR. When I had increased my pred for a few days because I was getting worse, the rheumatologist got his panties in a twirl about me confusing the issue and messing with the pred was masking something else, the something else being fibromyalgia and told me to come off pred. I tried to taper very slowly and at 2-3 mg ended up not being able to walk and I kept falling over because of the pain. Two months later, and back on the original dose, I am just starting to feel a bit better and that my PMR symptoms are stabilising.
I would go back to your GP and if he or she can't manage your PMR, then ask for a second opinion from someone who actually has some clinical experience of PMR.
Hi, he expects me to be back in pain if I reduce my steroids and says with the introduction of the pregabalin or gabapentin there will be a transition period that won’t feel great, but the goal would be to get me on the correct treatment.
I felt like I got my life back with the steroids and he will now take it away and the problem I have with that is I don’t believe his is totally accurate with his initial diagnosis. I still have to wait for my letter so I will wait for the outcome and plan moving forward
Please go back to your GP and find a different Rheumy. Do not settle for this. Some people need more than 15 mg, and besides that, your miracle response is proof to me there's an inflammatory problem. Just be adamant, I literally told my GP (calmly and nicely and desperate for relief) they'd have to call security, but I wasn't leaving without the Prednisone script to see if I improved. I did get lucky that my ESR went UP after a month on 30mg..he then finally believed me.
Point is, they don't know everything, and yes my gut instinct told me it was PMR..especially after all else was ruled out.
It is odd, 30 years ago none of them believed in Fibro (I knew a doc who was studying it), now they love using it as a default diagnosis. Keep us posted, please.
If both your "CRP and ESR" were raised, and you got a strong, rapid improvement to 15mg/dy of prednisolone, then these are strong indicators of PMR. However, you've never mentioned what pattern of pain and/stiffness you had, how quickly it came on, or how long you'd had symptoms before diagnosis. Was it worse at any time of day? These facts could affect confidence in your diagnosis.
In a previous post you said you're on thyroxine (but it's not in your Profile). According to this link, corticosteroids can sometimes interfere with such medication, though it usually happens only at "high doses" taken over "long periods": the example quoted is 5mg for 1 year. Perhaps your relapse is because your hypothyroidism is not as well controlled as it was previously?
"Drug-induced hypothyroidism is an underactive thyroid gland due to a reaction from medication. Corticosteroids can sometimes cause hypothyroidism or make it worse. High doses of prednisolone can slow the conversion of the thyroid hormone to the more active form."
Hi, my inflammatory markers are still raised and also my white blood count now?
I was in pain for years tbh but I had a lot of personal loss last year and I got to the point where I couldn’t turn over in bed, struggled to stand, pain all over which was worse in my arms especially at night where my arm muscles were burning. It eased off when I was up and walking but still hurt. 15mg steroids took that away quickly.
I have been hypothyroid for over 30 years and the doctor increased my thyroxine about 6 months ago prior to my diagnosis of PMR and he thought my problem was due to to that but now it looks like I may be over medicated.
Hi there so sorry you are having all these issues - unfortunately bit like watering plants - if you water too much it is bad for the plants if you don't water enough it is bad for the plants. With thyroid deficiencies you can lose your hair with too little thyroid hormone and lose your hair with too much - you can have muscle pain with too little and muscle pain with too much - awful situation - you just have to listen to your body and adjust as you can.
Thyroid problems should be ruled out before making a PMR diagnosis, because there is significant overlap in symptoms and inflammatory markers, including raised CRP, etc. Thyroiditis is sometimes caused by the immune system attacking the thyroid gland (autoimmunity), which is why it might also respond to steroids.
PMR tends to affect the shoulders and hip muscles most, but you mention "arms" in general as being the worst. Your doctor is right to think he needs to unravel this. What worked 30 years ago may not now.
Hi there so agree with thyroid issues - but unfortunately the blood test is set in stone and if you have a medical person who does not understand this debacle and sticks to it like glue then you are really never going to find out the truth.
Thank you for your info. Definitely a thought as I had what they called an autoimmune thyroid response about 8 years ago and pain was an issue. If the consultant reads my notes he will have seen that info
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Rheumy - grrrrrrr!
PMR and Ra
Advice please?
