Please can I ask for your advice ..I was diagnosed with PMR in Aug 2019, I had had 3 stressful years followed by an awful shingles attack, I was at a very low ebb and woke up finding my arms and shoulders locked unableto move, it was very frightening...My bloods were ESR 58 C 35 so my Dr who had absolutely no knowledge of me and prescribed 15mg of Prednisolone telling me I would feel like a 21yr old, I certainly didn't so he upped it to 20mg which stopped the pain and I began the slow journey tapering down .. I have been on my own ever since, my drs practice has virtually disintergrated with no staff and only telephone calls if you are lucky I have therefore had to follow this site for help ..in Oct 22 I had got down to 1mg every other day I thought I'd made it, but a stressful holiday and I developed terrible pain in both hips, knees and ankles, I could barely walk . I upped my dose to 5mg which sort of helped but probably wasn't enough.. my bloods were 7mgu high, so I stayed on 5mg for over a month then thought I should try and reduce and am now taking 3mg but I still have terrible pain in my right hip making sleeping difficult and walking up and down stairs awful ..I do find taking paracetamol helps me cope with moving so wonder if I now have arthritis rather than PMR. Should I try and get a blood test would that prove either way..I read somewhere that hip bursitis is common with PMR, could it be that. I have left knee bursitis but as I barely walk it's not too bad atm . I have always been fit and active and feel old and defeated now, I am 68 going on 88 not how I wanted to live out my retirement, I would be grateful for any advice thank you
PMR or Arthritis.. : Please can I ask for your... - PMRGCAuk
PMR or Arthritis..
Maybe a GP referral to a Rheumatologist would be the way forward. Is it possible to change your GP?
Thank you, I live in rural mid wales and this is the only drs in the area. ..it seems to be a couple of part time locums atm so they are reluctant to make major decisions, don't think there is a Rheumatologist in the area. My husband had to drive 250 miles every day for radiotherapy treatment for a month, it is awful here sadly
Sorry about your situation RFrankie, my best wishes to you and your husband. 🌷
Thanks, he is OK atm and I am determined to be too, we have lots of plans for our retirement. I am so grateful to find this website it has really helped me over the years , sometimes it's easy to feel its only you but reading other people's stories and finding similarities really helps.
I agree, this forum is invaluable for information and support. I’m glad your husband is OK and hope that you are able to get the help you need. I wish you both a happy retirement.
what an awful situation to be in. Hope you get help soon. You will on here I am sure 😊
Hi
If you think it might be osteoarthritis (and it does sound very familiar to mine) then you need to request an X-ray to rule that in/out.
If might be worth requesting a blood test at same time -but that will only show if inflammation is raised -not what is causing it.
..and yes bursitis can be associated with PMR - plenty of info on line -this is just one link -
lhp.leedsth.nhs.uk/LeedsPat...
Thank you for the link, it sounds like my pain, I will try and get an xray and bloods, presumably if bloods show inflammation then it means my prednisolone dosage is too low ?? Does paracetamol temporary reduce inflammation , sorry for all the questions just can't get my head around all this.
The problem with a blood tests (ESR/CRP)are not specific to PMR or GCA they just show you have inflammation -which could be caused by lots of things.
Paracetamol does not have any effect on inflammation caused by our illnesses. It’s generally used for pain & mild fevers (in colds/flu etc)
Thank you for explaining, think I will contact my drs and try to get an appointment armed with this information and see what they suggest. I was so hoping to be free of this after 3.5yrs but will have to be more patient. Years of riding / and falling off horses together with long cold wet days probably haven't helped my joints!! Ah well onward and upward, thank you
Joints-maybe not helped by weather or activities-but many over 50 have osteoarthritis- for some it causes issues, for others it doesn’t !
I can’t blame horses or wet weather! Familial.
As for PMR, it doesn’t necessarily do what you -or doctors want!
I'm in Wales too so I understand the difficulties. What I would say is don't shy away from the initial offer of a phone appointment. That is how I have got in to all my face to face appointments, it assesses the need.You can request and they will order the x-rays , blood tests and a scan of the bones ( dexascan for density or a scintigraphy for detailed assessment of Oestoarthritis) in the phone appointment. Often , it skips a step as the requests go in straight away and then you save the face to face appointment to discuss the results.
I would also suggest requesting a Vitamin D , Folate and Vitamin B12 blood test too , as low levels or deficiency in these can occur while on long term steroids , and these low levels can also cause flares in joint inflammation, painful joints , muscle weakness and muscle loss and various bone issues which cause Fatigue , Pain and Mobility issues. You have the right to request these tests.
You have the right in Wales , and the UK , to request a referral and if you only get to speak to a locum whom shows resistance you can point out that as they are the only doctors available at the moment it is necessary for them to make the referrals your usual GP would , as otherwise your issue would experience unacceptable delays in assessment as is set out in the referrals framework.
Be prepared though , the delays in seeing a Rheumatologist are much higher in Wales than other regions. You are more likely to be seen quicker with the more common conditions , however, so you may be lucky.
As others have said , high inflammatory markers only show inflammation is present not which condition is causing it . It would be a good idea to keep a pain score diary over the next week while taking the standard dose at the recommended intervals through the day of paracetamol to assess if a different pain killer is having some effect on your pain.
As with PMR , it won't make a difference.
With many other inflammatory or Arthritis issues it won't clear it completely but you can find a reduction in its severity.
You may also find some more relief using self care techniques with various types of arthritis or bursitis .
Pacing yourself , raising your feet when sitting or sitting to do kitchen activity instead of standing, using either ice or heat ( or a combination of both) on the most painful area whichever you find most benefit from , or a topical NSAID cream or lotion applied regularly.
I hope you get some help soon , Bee
Thank you for all your helpful advice, I do take vit D and have also been taking a multi vit as I felt a bit run down . They certainly help with my energy levels.. I have been waiting over 3 yrs to be referred to Orthopaedic s for my left knee, one of the reasons I gave up with a Rheumatologist, you loose the will ..I am a terrible mouse and tend to put up with things, not make a fuss, hope it will go away person, I think I need to toughen up a bit !! I did start on a diary when first diagnosed and must return to it to log my symptoms thank you. I have written to the surgery asking to see/ speak to a Dr so will see what happens 🤞
I am much older than you but very active runner, tennis etc throygh middle years. I am now in 4thyr of PMR downto 4.5 mg. When I have pain I first take pain killer,Tylenol,if that gives some relief I know pain is not PMR related. Good Luck on your jouttney Forgive bad typung, eye problem
I had terrible hip pain on one side about a year ago - it was so bad could hardly walk - X-ray only showed v mild osteoarthritis so it was concluded to be bursitis- I didn’t increase Pred, I rested / put ice on hip and did hip bursitis exercises and it soon improved- my Rheumy thought it was bursitis too- he also said groin pain is more an indication of osteoarthritis than pain on outside of hip
Maybe you need to see a Rheumatologist
That's interesting, I feel increasingly pred won't help, the lovely Dorset Lady has sent a great link to hip bursitis so will have a go at some of the exercises. I have asked to be referred but was told by previous Dr that he had treated 100s of women with PMR so unnecessary but as he has retired I will try again Its been a very long uphill battle !!
I have asked to be referred but was told by previous Dr that he had treated 100s of women with PMR so unnecessary
Well he must be a one-off, most GP could count their PMR patients in 10s not 100s
Won't say what he said when I asked for a bone scan other than to say I burst into tears and fled the surgery. It left me with a real phobia of asking for help..one of the nurses said the Dr hated 'Dr Google' and never to quote anything..thankfully he has now retired but I am still nervous about asking...but will ask about a referral !!
Sounds as if it’s a good job he has retired….but probably scarred many people’s lives….
Yes he was very unpopular and the surgery suffered with staff leaving but hopefully they can build back up again, we need a good surgery in this rural area, its all we've got !! The vets are a better option !!!
A scary and disturbing time for you but this site is invaluable and you still have your sense of humour! As well as meds and exercises I recommend a good dose of your favourite comedy show - Dinner Ladies, Cheers, The Good Life, The IT Crowd, As Time goes By, whatever suits you. Have a bit of fun checking them out - you can find some on YouTube. They can give you a lift. And go for the new doctor with confidence, I suspect the practice will have bid farewell to Dr Nasty with huge relief and have ensured the new blood will be entirely the opposite. Good luck! ❤️
Hubby and I love Fraiser, it sets us up for the day with a smile 😃
Me too - and a new series is coming with Only Fools and Horses Nicholas Lyndhurst playing a part!
Yes can't wait 😁
I'm so sorry for all of you that can't get the medical attention that you need. I started PMR in my thirties, when my kids were young. I felt I had no choice but to go on steroids. I got my life back and could take care of my kids but I'm paying dearly for that. I also have arthritis in every single joint, and just had a knuckel in my finger fused that was full of arthritis. Unfortunately according to x-rays that were taken (because my back was hurting), I have compression fractures on my vertebrae. I'd like to thank you for the suggestion of watching funny shows, so i turned into I Love Lucy. Not quite sure how much the belly laughs help though.😆😂🤣 Feel good. May tomorrow be a better day for all of us.
Chronic is pain is so lowering, especially when it’s cold and dark. Distraction is definitely the name of the game! X
Good riddance - I'd have complained officially about him. If you hate people that much you have no business being a GP.
Just for the record - I agree with everything DL has said
Thank God then that he's out of the system! Not that it helps you in your present situation. I self-referred privately to a Rheumy, 20 miles away, when I needed advice on PMR. Cost: £250 for half an hour! It was worth it, I felt. Don't know if that would be possible for you, though sounds like you need an x-ray, first and foremost. How easy, or not, is it to get a telephone appointment with one of the locums? Awful situation...
Dunno - if he's just retired that is potentially at least 10 a year for the last 40-odd years ...
Maybe….
He might have his PMR mixed up with his PMS!
I also have a surgery that treat hundreds 😂🤣😂🤣😂 shame they don’t update on the treatments and help us then
Must add here that I'd never heard of PMR till I was diagnosed in April last year. Since then, I know of 5 newly diagnosed people - and these are all within my circle, so to speak. Is it on the increase, I wonder? Maybe 'longtimers' may have the answer.
I would like to warn you here, do not overdo it on the exercises, if you have not been diagnosed, they can actually make things worse, as this happened to me. I self referred to physio with excruciating hip pain. It was immediately thought to be arthritis and the exercises I was given made it so much worse. I have looked at the exercises from Dorset Lady and there is NO WAY I would have been able to do those. Eventually the GP referred me to orthopaedics where X Rays and MRI scan showed inflammation and fluid within the joint and NO arthritis. I was offered a steroid injection but it was in the height of covid before the vaccine and I was too scared. But I did get referred to a hospital physio (unlike the self referred one who was private, taking NHS patients) who was really thorough in assessing me and gave me some exercises, which to a healthy person would seem really easy. He slowly adapted and increased the exercises, but it was going on pred that really put paid to the inflammation, once I was diagnosed with PMR (and GCA). I therefore recommend that you ask for referral to a hospital physio (and get X Rays to check for arthritis before you do any exercises).
sometimes it’s reassuring to have a rheumatologist I really trust mine he’s v chilled and has really helped me - am on 3 mg now and hip pain gone
You should be able to get an x-ray through your GP without a rheumatologist. I made the mistake of waiting for a rheumatologist with a hip problem and it took me over six months to actually see one.
hi. I feel like im in a similar situation. I myself have had to regulate my prednisone consumption and its always the weaning i have problems with too!
Yes from the beginning after reading others comments I decided to go the dead slow taper method..it seemed to work quite well and I refused drs notes saying I had to reduce quicker...but last year was very stressful with hubby diagnosed with cancer and the only treatment offered was 250 miles away, it put a terrific strain on us both and in hindsight I think I should have stopped and stayed at 4mg while his treatment was going on, it definitely seems harder when you've got down and then have to go back up again. I am on a higher dose now than I was a year ago..☹️
Hi , I’m reading your post and cannot believe how your situation is similar to mine , time scales , symptoms, my GP who has recently retired. I am 55 . Thankfully a new GP has referred me to a rheumatologist after one consultation- there is hope ! . I have found to ease hip pain during the night and the following day , I sleep with one of the leg pillows you can buy between my knees ,, May be worth a try for a little relief
I hope you are lucky with the rheumy - sometimes a good GP is preferable to a disinterested rheumy who thinks PMR is beneath them or who believes it only lasts 2 years and a reduction of pred to a timetable works. Spoiler: it doesn't and it doesn't ...
Agree...it's at times like this that I have evil thoughts and wish some of these clinicians could have the experience! I wouldn't wish the pain on anyone to be honest, but...
😂🤣😂🤣😂
Thanks, I do have a knee pillow but it was still too painful to sleep on either side with it. . Have to resort to just sleeping flat on my back! Think the lack of good sleep isn't helping with everything, but will try drs again..
I wonder if there’s a Rheumatologist who would do Telehealth consult?
Why? A physical examination is essential - diagnosis over the phone is fraught with risks and video isn't much better though maybe marginally more accurate.
Was just a suggestion given the difficulty accessing doctors and rheumatologists. I’m in the fortunate position of being supported by a team of rheumatologists and a knowledgeable GP and access this support through a mix of face to face and Telehealth via vid.
Isn't it better than nothing though?
I don't know to be honest - for follow-up it might work well but FIRST appointments f2f is essential for a diagnosis - they struggle enough with f2f!
probably although no doubt private. I did see some advertised during covid peaks but as PMRpro says, physical exam is preferred.
Really feel sorry for you as our daughter and son in law live in North Wales and the NHS situation there is appalling. No permanent doctors, non stop locum and a hospital that is dreadful.A dreadful situation.
I have a bursitis on my right side ( and one leg longer than the other !) which flared with the onset of PMR. I had it for at least a year along with a dodgey left knee and then we took a holiday in a lighthouse - ground floor accommodation- no steps , for 2 weeks and although I walked on the flat everyday outside, my hip pain and sore knee went altogether! I now book the lighthouse every year for a reset ! So maybe some rest will help along with ice, paracetamol etc good luck with it all.
Before my PMR was diagnosed and treated with pred, I was stuck in the UK when I was wrongly stopped driving - we had just moved temporarily to a small house with only 1 loo, up narrow steep stairs. My work computer was upstairs so I had the choice of eat or pee! In despair, I managed to get here to the flat - lift to the 2nd floor and all on one level. I was able to ski because I wasn't struggling with stairs.
Luckily we have a downstairs loo but it's amazing how many things you need seem to be upstairs during the day !! My husband has been great fetching and carrying for me which has been good, he's trying to get his fitness back after radiotherapy so doesn't mind !
Thank you to everyone for your good advice. I will e- consult my drs ( only way we can get an appointment) today and say I need a face to face appointment ASAP, and will let you know the outcome !
Yes, please do let us know how you get on.
I was very interested to read your post; I have had a similar experience to you and also wondered if I had arthritis. However I have just been to an amazing rheumatologist in Torquay (not much good for you I'm afraid). Why was he amazing? Simply because he said all the things which are being said on this forum; I nearly fell off my chair. (Which would not have helped the aches and stiffness). He told me that the PET scan I had did not show any evidence of arthritis so I echo all the advice given to you here to have further investigations. I do hope all goes well - you certainly need some good support after all you have been through.
I was diagnosed with trochanteric bursitis on my left side & sciatica on my right side last Friday…by my doctor (I’m in a year long wait to see a rheumatologist). He’s requested a x-Ray to check for hip arthritis (I already have OA in hands, feet etc), & have x-Ray booked for tomorrow, personally, I wouldn’t start any exercises without a diagnosis from a doctor. In your case it may be something completely different! Diagnosing yourself using Dr Google is tempting, but not that great a solution! I understand your problems re your surgery, I’ve waited since 1 December to see my doctor face to face, (phone appt 31 December) as our surgery has taken on1,500 patients from nearby surgeries that offer a worse service. Our surgery & staff are great, just overrun completely. I think most are!
sorry to hear about your situation, RFrankie. But I’m wondering if you’re able to get a private consultant with a rheumatologist maybe?
I unfortunately mirror 90% of your experience. After dreadful muscle pains - particularly in the mornings - some 6 or 7 years ago - also after a nasty bout of shingles, I was referred to a rheumatologist who diagnosed PMR and prescribed 15mg prednisolone daily along with co-dydramol, anti inflammatorys etc. Improvement was instant but any attempts to wean myself off the steroids remain tricky. Made it down finally to 5.5mg but have just pushed back to 7.5mg as getting up from bed became too painful. Also have increasing arthritis, particularly in my hands so it is somewhat impossible to distinguish between the two ailments. I would love a regular consultation with a rheumatologist - or even a GP, but the current state of the NHS makes this impossible. Don't expect any of this helps you but I was shaken at how I related to your story. I am 70 so need to factor advancing age into the scenario. In my head I could still take to the rugby pitch and contribute. In reality my 5 year old granddaughter can easily 'run' faster than me. Have changed the rules to making it a walking race. I still can't beat her. How the mighty have fallen. Postponement threatened, but am under the knife 16th Feb for stenosis and fusion of lower vertebrae. Then I hope to be able to beat a 5 year old.
Your story does sound very similar to mine, guess getting shingles was a indication of how run down we were ..like you in my head I can climb mountains and run for fun, I did try a few steps and was amazed at how I was unable to run anymore, I now stop and think before doing anything too physical just in case as I worry about the steroids weakening my bones. I wish you all the luck with your op in February and a quick recovery, maybe your granddaughter will be kind to you and let you have a head start🤭 best wishes.
Good luck with your operation on 16 Feb. SMW10. I have spinal stenosis and have been offered an operation, am still undecided whether I will go ahead.
If you're anywhere near a good osteopath or acupuncturist, they could really help. It was my osteopath that diagnosed my PMR and sent me off to my GP, who is luckily for me, informed and fantastic
Dear RFrankie,
You have my sympathy. I too live in Wales and it has taken nearly a year to see a Rheumatologist - the GP,s here are not fabulous - but I definitely agree with Rachmaninov2 that it is important that you do see a rheumatologist and you are going to have to be persistent with your GP which is hard when you feel so poorly and worn down. I too have felt hugely diminished by the pred and pain but I finally saw the consultant (at Llandrindod wells) for the first time last week after 18 months on steroids and he told me that most probably all the pain, breathlessness, tiredness, cramps etc was down to the steroids and that I might not have PMG but rheumatoid arthritis...... Having lots of tests and xrays of joints, lungs etc and feel more hopefull that I can make a step forward. It is indeed awful especially when you have been active and now you are staggering about with hope of recovery diminishing - I do feel better now something is happening and I think you will too - appointments are coming through much more quickly as well - Nil carborundum as they say. Don't give in. x
Thank you, I got excited when I read your post, LWells is an hour away but of course you're Powys and I'm not , but will ask gp when I spk to him. Glad you are getting the help and hopefully you will get a positive diagnosis, it's the not knowing that so frustrating...
Got for it and dont give up. Mind I do feel like giving up some days but I owe it to my family to keep going. When I saw the consultant I was the only patient - he is based in Hereford where I understand appointments are less easy and I had a heart scan in Hereford at the weekend - evident they can tell from the thickness of the aorta wall whether you have GCA as well. He did want me to go on Methodrexate (I think) but I do feel drugged up and would like to get off the dread steroids before I take something else with awful side effects (for some). I actually think it is hard to give a specific diagnosis to these inflammatory diseases- you can see from Rachmaninov 2 often it is how you react to various "cures"- damn I think I will have a drink tonight - well a bottle of beer anyway 😀
I must admit I was very relieved when the locum said I could have a glass of wine whilst taking steriods, whew thank goodness for that . 😅
My GP initially diagnosed PMR over the phone then referred me to a rheumatologist who diagnosed RA not PMR. My second rheumatologist changed the diagnosis to Inflammatory Arthritis, the third back to PMR/RA.
I find it very frustrating not having a definite diagnosis but can understand that it can take time for doctors to be sure.
I hope you begin to get some answers soon.
Best wishes.
I have told Sarah Mackie: the greatest unmet need is a biomarker of some sort for a definitive diagnosis.
I have a vague idea of what a biomarker is, but would be grateful if you would explain please.
Something specific as a blood test or a biopsy or something that is only found in the particular illness so the diagnosis is as near certain as possible. The temporal artery biopsy finding giant cells is a biomarker
Thank you. Do you know if this is being researched?
No doubt someone is.
Yes, hip bursitis is common in PMR but that doesn’t mean it can’t be eased. I have trochanteric pain syndrome, which includes bursitis. I started with hip X-rays to rule out anything else. Loads of inflammation there so I was referred to the pain clinic for steroid injections, which help a lot. Are there any pain clinics nearer? Could you call your surgery and ask (demand) for hip X-rays ? I am so sorry you have so many barriers to getting care. In the meantime I find like others ice, heat, paracetamol, and using a stick help.
Dear RFrankie, I am so sorry for all you have gone through and are still going through. Please keep us all in touch as to how you are faring.
I just wanted to tell you how very very helpful your post has been. I owe you a great debt of thanks. Like you I was diagnosed in 2019. February and I was 70yrs but still very active and energetic. I just didn't know what had hit me. The GCA was the worst as the headaches were in capacitating. Doctors visits and blood tests left me none the wiser and I was far too ill to do anything other than curl up in a hole!! Once things improved after 4months I got on a train and went to see our old doctor in London. Rheumatologist and Prednisolone followed and life started again. I thought, guzzle the pills ignore the whole thing and it would eventually go away. I think it would have done but Covid caused all sorts of complications, I feel, what with the vaccine and the infections. Nothing seemed to go in the right direction and thus I found this wonderful group of people.
I had an awful problem over Christmas and could hardly walk at all. It was so different from the usual PMR flares. I did up the steroids and I took some anti inflammatories and it seem to go eventually, in time for everyone's departure. Upping steroids seems to be a bad idea for me but.....? Anyway I am pretty sure I have Trochanteric Bursitis - thanks to your post! It fits the bill and I am off to see someone tomorrow. I have Bursitis in both knees, which doesn't bother me too much any more. I had no idea you could get one in the hip!! I had been worrying so much about upping the steroids yet again and had almost decided to go for sick day rules, only I wasn't sick just crippled in a different way when I read your text.
I could have been me!! I'm older than you but I used to ride, bicycle and walk miles, clip hedges, garden, draw, paint then overnight I went to 103 yrs!
Good luck to you. My one bit of advice would be to ask for a DEXA scan. It will give you a base line which in the case of PMR is probably very useful!
Oh yes, many moons ago we lived in Wales for a short while. A mile and a half down a dirt track. No phones and well water. I loved it but it was impractical for work really when the kids came along. We had a wonderful midwife in the village who ran the local Hardware Store! As for a doctor? Never got round to finding out if there was one!
All the very best and thank you.
Thank you to you too, yours and the other lovely posts have enabled me to have a weep, living away from family and real friends its easy to put on a 'I'm fine' face !! ! However I hope I will get a good response from the Dr and I can move forward, good luck for your appointment tomorrow, I too never realised you could get it in the hips, I🤞 you get a good outcome
sounds a little like me this time round no boost whatsoever 😤 been on a year now on 40 tops
Just an update on my post....3 months down the line I have had a blood test a f2f with a Dr. and a hip xray...I have been put on Omeprazole as my blood platelets were low and the Dr thought I might have a stomach bleed I do take Greek yoghurt with my prednisolone . The hip xray showed mild osteoarthritis, he didn't know what my bone density was, and he said he thinks I have a trochanteric bursitis....which is basically what I thought and asked him 3 months ago ! He is referring me to Orthopaedics dept and said they will decide on physio or a steroid injection but couldn't tell me how long I will have to wait for an appointment. Unfortunately I am still in considerable pain, can't sleep as I am unable to sleep on either side only flat on my back and I never normally sleep flat..its all frustrating and miserable. My c reactive protein has gone up to 8 but Dr says that's OK and they only worry if its 20+. So guess it's just wait and wait... at least the sun is shining , hope you are all improving....
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