Hi - after some great advice on here yesterday I asked my doctor about PMR which eventually she decided I have symptoms so after a long appointment and her telling me they wouldn’t do a ERS test as it’s too expensive for the nhs plus other tests that I needed doing for thyroid , I came home and it almost didn’t kick in till today why why do we have to push push push all the time.
I couldn’t wait 12 months to see an endocrinologist as my cortisol levels keep dropping so I paid to go private the consultant wether he works privately or for the nhs the bloods get done in the same place surely. I’m off work and have been for months so financially it’s hard - good old credit card . I now have had to ask after paying twice to see an endocrinologist that they refer me back into the nhs to wait now months before I can get some of the tests done.
hopefully they’ll do the cortisol as I have had it done before at the doctors , then I can start a treatment of the prednisone to help with the pain.
Anyone have thyroid problems whilst having PMR I just didn’t know if it’s linked in anyway with hormones.
Appreciate anyone’s history on this. 😊
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Not so much the hormones - but both can be due to autoimmune disorders and once you have one a/i disorder you are more likely to develop another.
It is said that pred can suppress TSH - it is disputed - but patients who already have a thyroid problem may appear from blood tests to be well managed because the TSH is in range - but is artificially low and in fact, more medication would be helpful.
I’m waiting to see if I can get the TFT test done through the hospital I just don't want to wait too long before I can try the Pred to see if it helps after my cortisol is tested
I don't understand that if she thinks you have got the symptoms of PMR she hasn't given you, at least a trial week or two of Pred which would help to confirm it one way or the other.
Hi - I’ve had the report back tonight with the tests to be done so I’ll contact the Dr’s tomorrow so hopefully early next week or if I can push maybe earlier
He’s put me on duloxetine - I don't really want to go back on antidepressants but they may help me sleep 🤔 Sertraline didn’t make no difference nor norotriptyline ☹️
Early morning walk before the heavy rain today I can’t walk far at the moment so I have to put my dog in the car and take her to the local common we have a good spot she can run and I gentle stumble along behind but she keeps running back to check I’m ok or telling me to hurry up haha
You pushed me to move this morning thank you one happy dog now! It’s so easy to just get in a routine of not going out so much, I do have someone who will take my dog out but I like to try and do it even if I do have to put her in the car and take her to the fields for a run she likes that typical Lab 😊
I don't walk as much since we lost our Border Collie in January, our remaining dog an elderly cockerpoo type Heinz 57 cross can't, for various reasons go on the hills or even the undergrowth, so it's an early morning local walk with a top up wander in the afternoon. Whatever the weather. Wasn't too bad this morning, think it might be a tad worse tomorrow although it may stay East of the Pennines if we are lucky.
My rheumatologist says prednisolone treats inflammation, pain etc so when you taper down any pain will return so will not agree that I have pmr. Hope this makes sense
Yes, Pred will treat the inflammation, which is why you should only taper down, slowly, to the level where the inflammation remains under control. If you go below that dose the inflammation will build up again and you will have to up your dose to where it was last effective. This is not something that can be rushed, whatever the Rheumies and Docs might want.
Answers any questions we might have! He has some very strange ideas about PMR and GCA and appears to think that the pred cures the disease and then it is a fixed timetable to get off pred without it reappearing. If the pain returns it is either your fault for not doing exactly what he says or it wasn't PMR in the first place. He has declared himself a GCA expert. He was part of PMRGCAuk but seems to have cut adrift - probably doesn't agree with their views. I really fail to understand his viewpoint ...
Had consultation with dr mukhtar specialist nurse & she still will not have it that terrible pain I have in left leg every morning is anything to do with pmr. She says it’s osteo arthritis. My go hasn’t said that. Physio gave me a couple of exercises to do but they make pain worse . Nurse got nasty & said it’s obvious I don’t believe her &. Is making apppt for me to see mukhtar. I do not want to see him I don’t like him last time felt he was nasty & rude to me. They still maintain Norwich is the leading hospital for GCA/pmr. To have pmr nurse said I would have pain both sides, lose weight, lose appetite, night sweats etc. what are your views
It is actually unusual for weight loss and night sweats with PMR, they do happen but much more likely with GCA, Who mantains the N&N is best for PMR? No way - Leeds and Chertsey are way ahead if you get the right doctor. "Nurse got nasty" - top down influence there!
What is the left leg pain? OA hurts all the time, not just in the morning. I have hip pain and I bet she'd say that to me - and it definitely isn't because here they use imaging to check before pontificating!!!, You could try PALS and ask for a different doctor as the relationship has broken down - Max Yates is a far preferable PMR doctor.
Who or what is PALS & where is MAX YATES. Dr Muktayr is the expert on GCA & PMR his specialised nurse tells me. What is point of seeing him surely he won’t say anything different to his nurse. Before diagnosed with GCA I had same pain in left leg mostly thigh which went once I started 50mg of prednisolone now down to 5mg. When I got to about 20 mg the pain started again & is there everyday. Worse mornings than later in day, Don’t know what to do for the best
It could possibly be trochanteric bursitis - where in the thigh? Outside upper half of hip? Or where? What makes it worse?
PALS is the Patient Advice and Liaison Service where you can go to if you have problems. They can mediate to get a different doctor for you though they don't have much in the way of teeth. The trouble is, a department tends to stick together though I don't think Max Yates is affected too much as he is part time research.
Longtimer is the expert on Max Yates - he did his thesis on PMR. Muktyhar considers himself to be a world expert - he told us so. In my book, self-praise is no recommendation and he certainly is way behind Prof Mackie on PMR, it is her research field and she IS a world name as a member of OMERACT. He is too rigid to be good - thinks he knows it all and won't listen to other views.
If at all possible, I would choose a different hospital if you can't get transferred to Max. Nothing good comes from a relationship like that,
Dr Muktayr is definitely NOT an expert on GCA and PMR as many of his ex patients including myself will tell you....arrogant man with very shortsighted views on these conditions.....and could possibly be dangerous when patients are ignored.There is no comparison to Dr Max Yates, he will discuss anything concerning your condition.....his mantra is communication, he even rings you up!.....you could try ringing his secretary as I did yesterday to see him, and how to transfer over to him.
I refused to go back to Dr Muktayr.....then luckily found out about D r Max Yates....good luck.....
Depends on who has available appointments initially. Max Yates is only part time clinical so has fewer. Your profile says you were diagnosed with GCA - and he probably takes GCA patients rather than plain PMR.
PMR can affect people in different ways so I cannot comment..Don't think Dr Yates was available all those years ago that I became ill.....I was sent to Dr De Silva....no, don't see her either!...I have never seen a specialist nurse, only had bloods done next door if Dr Yates requests them....
Georgina Ducker is muktary specialist nurse, normally only see her, yesterday we fell out she says it’s obvious I don’t believe her so wants Muktyar to see me & explain everything. I am sure he will only say the same as her so what’s the point. My 2 years of Prednisolone finishes next July, so feel like just carrying on & put up with pain
This is the point that shows he hasn't a clue about PMR - Prof Sarah Mackie and lot of other better doctors than him regard that concept of PMR lasts 2 years as a myth. But if you are on too little pred then the inflammation will build up again and you will be back where you started. I have often wondered what happens to his patients he chucks out as "cured" at 2 years of pred. Maybe we are about to find out.
Although I had a lot of pain & stiffnes prior to being diagnosed with GCA I don’t think that have ever considered that I have PMR. I just think it’s that by what I have read inliterature they gave me. When I mention it to them they go mad at me
Because you are on pred - it is quite common. There must be enough inflammation present for long enough before the liver produces the proteins in the acute phase response that raise the markers. And some people just don't - up to 20% have markers "in range", mine were, but they may be raised for them - mine were,
This is one of our problems with CM and his team - they think they know better than other doctors who have worked in the field for many years. He is a poor scientist ...
When people are diagnosed with PMR what dose of Prednisolone are you given. Dr Muktyar specialised nurse says it 15 mg another reason for her to say my pain etc is not PMR as I said I think pain started again when I was down to about 20mgs
It depends on the patient and while 15mg is used by some - and works for some patients, it did for me - the international recommendations say "The lowest EFFECTIVE dose in the range 12.5 to 25mg/day". Exceptionally it may require 30mg. There are a lot of reasons a patient may need a lot more, not least the disease activity and how long they have had the symptoms. They may actually have a mild level of LVV that is causing the symptoms but hasn't been identified.
There are things to dispute about a set of recommendations developed by consensus in a group of experts - but DrM seems to have set himself up as superior to that group. Possibly, one wonders, because he wasn't included????
I have underactive thyroid. Rather depressed, anxious, difficulty sleeping. GCA diagnosed August 2022 put on 50 mg Prednisolone now down to 5mg. Every day , mornings especially have awful pain in left knee, thigh area, wears off normally later in day. Specialist nurse I see at rheumatology will not have it that it’s PMR
My rheumatologist didn’t diagnose it she’s referring me onto another consultant now.
My right knee is sooo painful I couldn’t go up and down the stairs yesterday without saying ouch every step - getting up and down out the chair is getting worse its the same my thighs are hurting almost burning stinging sensation and this morning I have numb knees, how weird ☹️
It’s not nice you have it who diagnosed you and I hope the medication has helped to relieve majority of the the pain as it’s horrendous isn’t it especially when no one listens
Rheumatology at local hospital diagnosed me with GCA but no one will say I have PMR, because my CPR blood tests are normal. Pain killers don’t really help
My CPR was normal but my blood viscosity is high otherwise I don’t think the doctor would of listened the other day , my bloods haven’t showed inflammation markers before but the pain has gotten so bad lately I’m not surprised if came back high
My consultant has asked for more bloods to be done ANA ENA I’ll have to fight with my dr surgery today to see what ones they’ll do as they won’t do ERS and TFT she told me on Tuesday I have hand tremors , weight gain , dizziness and on and off headaches brain fog and no patience at all lately ☹️ pain is making me clench my teeth it awful
And I will take THEIR ideas ahead of that of a rheumy in a district hospital - or even a uni hospital - unless he is actively involved in PMR research ...
Hopefully I can get the TFT test done to see what’s going on I have lots of symptoms but they only done tsh in 2021 my pain is terrible now can hardly walk ☹️
I’m sorry to hear you are having these problems and I know it is so difficult to get PMR diagnosed. My symptoms were dismissed until a new young doctor joined my gp surgery. I was given 20mg Prednisone which over two years I have reduced to 2mg. I was referred to a rheumatologist who diagnosed tendinitis in my shoulders after various scans. I’m now waiting for steroid injections in my shoulders but thank goodness the Prednisone has practically cured my PMR 🤞. Unfortunately you have to push and push for help with PMR and hopefully, like me, get a registrar who listened. Also it’s the depression you suffer as well as there seems no help. Hopefully you will get some help and relief very soon.
Thank you for your reply 😊 I have bursitis in both shoulders it’s so painful I do feel for you - my left shoulder froze in 2021 and is still not 100% - my rheumatologist Nov 22 after me complaining constantly last year that I was suffering from more severe pain after steroid injections in June 21 and hydrotherapy and physio end of 21 and early 22 , she was to request further ultra sound and physio on them but nothing came through , I emailed jan23 to chase this up nothing then my doctor emailed her in March after a really bad flare all around and she’d forgot to request the tests!! ( she just didn’t believe me! -?thought it was stress ) even said that and rolled her eyes at me and told me my life’s emotions are coming out as stress and pain is not always related to inflammation. 😢
You can imagine how shocked I was - I cried on the way home
This was before the ultrasound was done when I did go for the US appointment I had bursitis in both shoulders again severe in my right and tendonosis in both, the guy who performed my US said why aren’t you keeping up your physio - I hadn’t been given any other since Aug 22 . He wasn’t happy.
I now can’t cope with the physio it hurts too much and with the pain in my lower limbs as well since February 23 - I’m seized up the more I try and do the worse I feel and suffer the next day.
I’m so hoping after next Wednesday (my blood test) that I can try the Pred I need a way out of pain
Stress!! of course I’m stressed no one listens to me I know my own body it is horrendously affected my life
I developed an underactive thyroid and then a year later in April 2023 was diagnosed with PMR. I knew that with one autoimmune disease I was more likely to develop another. Thyroid seems to be under control with medication and I am gradually reducing prednisolone. I have a moderately low carbohydrate diet, which seems to have helped with the PMR inflammation (and also to lose some of the pounds that accumulated with the underactive thyroid), I read somewhere that if carbohydrate intake is very low it may affect thyroid function so erred on the side of caution - 50 -90 g/day.
I had Graves’ disease before the PMR/GCA came along. When the Graves markers were normal I stopped the thyroid medication and then a few months later PMR/GCA showed up.
I’ve wondered how my thyroid is doing sometimes and if it could be causing some of my symptoms. My GP has ordered only a TSH test, not a full panel, which she says is in normal range, but I wonder what all the prednisone is doing to my thyroid. I’m on 9 mg.
Hi - I’m getting blood tests done next week to test for thyroid I had tsh done in 2021 normal but the consultant wants to check t3/t4 having all sorts of issues but the worse is the constant muscle joint pain not sleeping at all
it’s so difficult to figure out what’s causing which symptom!
is it a rheumatologist doing the testing or your GP? (I’m in the US). I had finally found a rheumy that would listen and she left the practice. Been depending on my GP for my pred ever since who is overwhelmed and not too fsmiliar with PMR/GCA.
I hope you get some answers and help with the pain. Not being able to sleep is certainly not helping! I would be interested to see what the thyroid tests show if you feel like sharing.
I’ve been under rheumatologist for last 3,years she’s not been at all helpful ☹️ put most of it down to stress. It was my endocrinologist who has suggested the tests and to discuss PMR with my GP who actually has taken this in now and said she’ll trial me on pref once I have tests done this week because I have to have cortisol test done too as it’s been dropping which is why I’ve gone to a private consultant as the waiting times are 12 months ti be seen.
My plasma viscosity is up but the doctors won’t do a ERS test as they can’t request it as it’s too expensive for the surgery.
I’ve been On every pain killer going snd nothing gets rid of it - I have had pred last year for chest infection a couple of times after covid and the consultant did say about PMR which is why I joined this site to get some advice.
I’m hoping after this week I can trial it to see if it helps my thighs after stinging constantly painful knees swelling in lower legs which is making my ankles hurt
I’ve had reoccurring bursitis in both shoulders and tendonosis which is painful.
Like you said it’ll be intersecting to see what the endocrine system is doing but more of my symptoms are muscular and joint pain
My doctor has doubled my duloxetine to60mg and advised not to go onto steriods and wait for my rheumatologist appointment in January to discuss PMR or long covid and fibromyalgia ☹️ another waiting game but thanks for your advice everyone at least I know what to look out for if I get worse x
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