Hi, this is all new to me but I am grateful for this forum as I am finding out a wee bit at a time about my condition PMR. I attended Endocrinology for mysterious weight gain about 10 years ago and a Professor noticed how thin the skin on my arms were. Anyway lots of tests have been carried out over the years and everything came back normal. I knew there was something wrong but no one could find out what it was. I would go once a year just for a review and was discharged in June this year. My gp (my own gp has extended leave) is referring me back to Endocrinology and when I asked him why he said that I was too young to have PMR, I am a very young 60. I didn't believe him for one minute and felt very unsettled about this when I got home. Has anyone else ever been referred to an Endocronologist? I have never been on steroids and as I said this is all new to me. Would be grateful for any information. Thank you.
What a numpty! He needs to read his BSR guidelines - it has been a lower age of 55 for consideration of PMR in the presence of appropriate symptoms for a long time but the last lot dropped the age to 50. The AVERAGE age of onset is said to be 72 - but I suspect it is skewed as many patients get it in their early 50s, even late 40s but it is ignored as "can't be that, you're too young".
There has been some discussion amongst experts in the past about endocrinology problems being at the root of PMR - mainly poor adrenal function - but it isn't particularly mainstream. As I said to you, I had had fatigue and hot flush problems before with what was probably ME but at one point my gynaecologist in Germany tried me on HRT - and it made a big difference to the fatigue. I realised a month or so ago that the PMR symptoms appeared a few months after stopping the HRT as a result of the latest scare. Had I stuck with HRT would I have not needed pred?
But it is does suggest that there might be an endocrine dysfunction involved somewhere. Would endocrine "replacement therapy" work I wonder?
One or two people have been sent to endocrinologists when they got to lower pred doses to consider whether their adrenal glands were "waking up" at the low pred dose.
I would get a new gp and go see a rhematologist. Average age for PMR is 70. Some one has to be at the low end of the curve to get an average age of 70. PMR is not an endocrine problem but it does become one when you start suppressing your adrenal glands with steroids and there are good and poor doctors ( that is said by an M.D.). If the endocrinologist is worth his salt he will make the correct diagnosis and either take care of you or send you on your way to a rheumatolgist. If you do not have faith in your doctor, move on.
Charlie 44644
Charlie44644
Eileen I don't believe my gp for one minute and I think he knows I don't believe him. I have said many times to my own gp (shes on extended leave) that my adrenal glands should be burned out because I had been through so much stress over the years. Being a single parent of 2 sons with no emotional support and me full time at University and taking on a mortgage (I am not going to go on and on) but just recently (past 2 or 3 years I have had chronic stress (unavoidable) and I am a very strong independant person and yet very laid back. I am actually surprised that my adrenal glands are working at all or maybe there not, who knows. Like yourself I was on HRT years ago but it made no difference so I stopped it myself with no repercussiions. My fatigue has become my normality and I resent it yet accept it hoping that tomorrow is a new day.
What is endocrine "replacement therapy" I have never heard of it?
Thanks for replying. I don't believe my gp for one minute about age and PMR but I am too fatigued and have brain fog to start changing. He is not my own gp but he's in the practice. Endocronology have carried out every test there is too be carried out and all came back normal. I wonder this time when I am on 20mg of pred will something show up. She was honest with me and told me that it (weight gain, thin skin, thinning hair) was a mystery. I await an appointment with her with baited breath.
That's why I put it in quotes! The whole feedback system called the hypothalamus/pituitary/adrenal axis involves a whole range of hormones - thyroid, adrenal, ovarian. If any of them are not functioning absolutely correctly it can make it all wobble. One of the consultants at the ME/CFS unit in the NE of England discovered that if he treated his ME patients as if they were hypothyroid and gave them throxine they did much better overall. Maybe that is how the HRT helped in my case. Given what they DON'T know about the causes of the PMR vasculitis nothing would surprise me!
Amongst the links in that post is one to a paper by former members of the Bristol UK rheumatology group (Quick and Kirwan) which they wrote to be aimed at GPs to help them diagnose and manage PMR (and GCA) because they do struggle with it. It sounds as if you could do your practice a favour by printing it out for your current GP - and I bet a load of other patients would benefit too!
I don't mind when GPs say to me "I didn't know that" - I DO mind when they are pig-ignorant on a topic and bluster. Is your good GP on maty leave? The one in my UK practice who knew about PMR had been there on and off because of her 3 pregnancies which was why I hadn't seen her before. If she'd been around I wouldn't have fought to be heard for 5 years.
Five years is a long time Eileen, you poor thing. I honestly don't know why my gp is off, she is 50 so it 's not a pregnancy. It was actually a locum dr who diagnosed me after blood results and rang me at home, so I was lucky in a sense. Then I had a review with a gp last Tuesday and bloods were still elaveted but kept preds the same dose, which I was glad of. Have to get bloods done next week to see how they are. The fatigue is taking over so everything is a big ordeal (physically) Even processing information is a problem. It's early days for me and as I said I am taking each day as it comes,
Just prior to my diagnoses of PMR & right after I had terrible brain fog & was extremely tired, which was really distressing to me. I'm no expert, but if you start with 15 mg of prednisone you should feel a great deal better in a short period of time. I would also consult a rheumatologist. Don't let the docs push you around. Good luck to you.
Hello pat, sorry to hear you're now one of us, but welcome nevertheless. Being on this site you will learn loads and there will always be someone out there who has an answer to your query or at the very least offer great advice, because believe me this condition can sometimes be very scary as nothing to do I with PMR is straight forward. I was diagnosed with PMR exactly this time last year although I had been suffering from all the symptoms since the September. By the time I got to see my rheumatologist I was in so much pain, and so stiff that I needed help with nearly everything I did and as my gp (changed surgerys since my diagnosis) said that she couldn't for the life of her think what the problem with me was I really was terrified that I was dying.
anyway I was 52 when diagnosed and like you had been under tremendous stress for about 3 years, what with house sales, a huge move from Kent to cornwall and losing my dear mum to cancer that even today I have not come to terms with, but up until 4 years ago I was a broadcast news journalist for local radio stations and so was constantly under huge pressure and stress that I thought I handled really well and didn't effect me at all. Looking back I wonder how much of this condition is triggered by stress as opposed to a virus as is what is widely believed to be the cause of the autoimmune condition called PMR.
i am very lucky in that I now have a great gp who really understands the condition and my rheumatologist that I see every 6 months is great too. I'm now down from 15 mgs to 9 mgs and this week am attempting a further 1/2 mg reduction following a very slight flare up when attempting my last reduction. Yes I have bad days when the pain Is worse than usual but that's normally as a result of me pushing myself just too far and when the pain dies down a little I vow that I will take things slower from now on. But of course you can't change the way you are and before soon I've overdone things again. We all hope this condition dies down with few hitches, but we have it and we learn yo live with it as we know that unlike other illnesses this one won't kill us, it just infuriates us. Keep smiling. Christina
The concept of a viral cause for PMR is pretty much discredited these days - only dinosaurs of docs hang on to that idea. Stress is a common factor though and it is probably a range of things, environmental, genetic (it is most common in people of Scandinavian extraction), medical history, and finally something triggers the switch in the immune system and it happens. To be honest, whilst PMR is a pain both literally and metaphorically if you have to develop an autoimmune disorder it is one of the less nasty ones! It isn't life threatening, you tend to have had a life before developing it, it doesn't destroy joints like RA and can be managed reasonably well with pred, common sense and care. A few hours reading on a vasculitis forum will show you how lucky we are really.
Hi Eileen. Interesting what you say regards poss causes of PMR. I have always felt that mine was caused by a severe viral cough that I had picked up last March which lasted for 3 weeks where I could not sleep without siting up. As we were already going thru a hard time with my ma in law who had broken her neck at Christmas and was now living with us I was totally stressed out, Tina had also developed a heart condition (Ventricular tachycardia) probably brought on by stress.. In the May all was fine, went to bed and woke up at 7am unable to move my legs and that was it, PMR.
Hi Eileen, I couldn't agree more, especially the part about other immune conditions being far far worse. Furthermore, although I am not from Scandinavian extraction I am from mainland European extraction and when I was doing a little research when I was diagnosed I had to chuckle to myself about the Scandinavian bit. Christina
Just had to reply to you....I know of a lady who was diagnosed with PMR 6months ago, and she`s 44...her doctor knew straight away what it was, and so did she...her nan had had it at age 72.....why should age come into it when getting any illness!!.....
Don't forget Christina - those darn Vikings got EVERYWHERE!! Where is your family from (she asked nosily)?
That was probably the straw that broke the immune system's back - but there was a theory once that you could "catch" PMR...
Quite! But try telling your average doctor that. One of the top PMR/GCA consultants in the UK is totally unwilling to accept you can have either if you are younger. Despite there being a 37-year old man in South Wales who died of a stroke last year and at post mortem was found to have had undiagnosed GCA. It hadn't been considered at all as a cause of the stroke and previous symptoms. The pathologist knows it all - but it is too late! There is also a form of GCA that is found in teens and twenties - so why should the likelhood of this rare disease disappear altogether for 25 years and then suddenly reappear. But there is no telling some of them.
Hi Eileen, mum German but mums mum Polish. Dad from old Czech region or Slovak region! Probably more than that knowing my family but that's all I know of. christina.
So is that Sudetendeutsch or did they leave long before that? I can never remember where the various places were. It got all so complicated last century!
Sorry Eileen, I can't speak a word of German! I know it's a disgrace but mum was a nurse all her working life and so her English was perfect albeit with an accent. Mum came to England almost straight after the second world war finished and learnt English almost immediately then when I came on the scene there was no German speaking in the house until we had family over then it was me and my brother that felt like outsiders as we had no idea what they were saying. As for dad, he was off the scene long before I can remember. Me and my brother are therefore first generation English although my dear brother is unfortunately no longer with us. Christina.
" To be honest, whilst PMR is a pain both literally and metaphorically if you have to develop an autoimmune disorder it is one of the less nasty ones! It isn't life threatening, you tend to have had a life before developing it, it doesn't destroy joints like RA and can be managed reasonably well with pred, common sense and care. "
So true, if you have to get an autoimmune disorder this one seems tame next to others. My niece was diagnosed with lupus at 18 & is now 48. She has been in so much pain for most of her life. 2 knee replacements, flares up all the time. It's been a difficult journey for her that's for sure.