I was diagnosed with PMR in January 2021 and have been under the care of my GP. I am now taking 7.5 mg daily but am still getting pain in my arms and shoulders and feeling extremely tired. Things are complicated by the pains in my back for which I have seen an orthopaedic consultant and an MRI has shown degenerative changes to my spine.Apparently there is no surgical solution for this so I have been advised to do exercise to increase core flexibility and strength. My GP would like me to decrease my steroids as they have increased my BP but I am not keen to do this while still getting pain. Waiting list in our area to see an NHS Rheumatologist is at least 6 months. Has anyone benefitted from paying to see a Rheumatologist privately, I do not have health insurance.
Not sure what to do: I was diagnosed with PMR in... - PMRGCAuk
Not sure what to do
Feeling tired could be down to adrenal beginning to realise they need to start working again - have a read of this -
healthunlocked.com/pmrgcauk...
If you still have arm/shoulder pain and think ts PMR rather than back, then no reducing - for time being...and how much is your BP increasing?
If you say roughly where you live and how far willing to travel, we can suggest a Rheumy...you may only need one private appointment, many will then transfer to their NHS list...
Thank you. My postcode is CH3 and I live just outside Chester. I have been on BP medication for about 30 years and pre PMR it was fairly well controlled. Now it can fluctuate from 120/70 to over 180/84. My GP seems reluctant to refer me but have recently seen another partner in the practice who has mentioned it. I am not very confident that I am getting the right advice though as he has also said I should stop my statins that I have taken for over 20 years as he feels they could be causing the pain and to decrease my steroids. I do feel I need to see someone who knows what they are talking about!
Hi again -maybe amend title of this post to include looking for a Rheumy, if you don’t get many answers -then -raise a new post with that title….
Good luck with getting some recommendations. ..sorry can’t advise personally -GCA too long ago and not in your area!
l used to live in CH5 so l was just over the Border so it always complicated things a bit.
I was seen privately in Chester but then referred. urgently on the NHS to Wrexham - when l saw the most amazing Consultant who sadly is no longer with us following a climbing accident. RIP
I now live in Telford & am seen at Gobowen in Oswestry an Orthopaedic Hospital - l saw my current Consultant Privately the first time in Shrewsbury; he transferred me to his NHS Waiting List as l was to recommence Methotrexate & would need close Follow Up. However, l did have to wait to be seen at RJAH but everything was in place for me pretty quickly.
The Waiting Lists then we’re nothing like they are now - l’m afraid l don’t know any of the Rheumatologists in Chester but have a look at Grosvenor Nuffield Hospital in Chester & see who goes there.
jinasc keeps a private list of recommended Consultants & she’ll see this reply. I’ll check out GNH & CoCH to see if there’s anyone l know…..
6months Waiting Time at the moment is actually very good & sadly l’m not being flippant in any way there……
MrsN
I’ll check those Hospitals for you…..
Thank you. I have tracked down a Rheumatologist at the Nuffield who is on the list of staff at RJAH and have emailed my GP to ask for a referral. I know 6 months isn’t that long but i also have severe back pain since early this year that prevents my walking far or standing for any length of time. I have explained this in some of my replies. The combination of this and my PMR is really affecting my day to day life and the fact that my BP is all over the place is also worrying. Feel. I am running out of patience with talking to my GP and not getting any advice so this is why I’ve decided to see someone privately.
Good Luck & l hope you get seen soon & that they’ll have some answers for you 🍀
Best Wishes
MrsN
Thank you so much. Sorry the doctor I am seeing is at the Spire Wrexham and not the Nuffield.
That’s Great - to my knowledge all the Consultants are RJAH are excellent & certainly the Rheumy Nurses are & very helpful.
Let us know how you get on 🍀
I saw a rheumatologist at Spire in Nottingham. He was brilliant. Hope you get sorted
Oooh - now THAT might be a useful bit of info. That region of England has been something of a desert with a few absolutely awful experiences to boot.
Oh no. Well I hope it wasn't the one I saw. There are 2 at spire Nottingham I think. The one I saw doesn't see Bupa patients though. The other one is Alison Kinder
. I was put on budesonide for colitis for three months having tapered to 2mg prednisone. I finished the 3 months and doc has refused to put me back on pred as blood test results are normal. now After 10 days I am in such pain in all the right PMR places. I have stockpiled pred and am considering starting taking it. I’m going to Australia for 9 weeks next week. Don’t want this pain ruining everything. Will pay to see rheumatologist when I get home in feb. I live near Southend and was wondering about prof desgupta if I can get a private appt? What do you think. Would appreciate your help
Time your doctor learned a bit about corticosteroids! He is putting you at risk not only of the PMR flare that is already manifesting but also of an adrenal crisis with the sudden stopping of the steroid even at the low dose.
Unfortunately, in my opinion Dasgupta isn't brilliant at PMR. Not sure who to recommend near Southend though.
Not sure if Prof is still seeing patients -he has retired from NHS but think he’s still seeing private patients. Worth a try.
Not quite sure how you are going to manage 9 weeks in Australia- or are you hoping that a short time on the Pred you have will be enough to get you through the rest of your time there.
yes I hoping what I have will be enough. 3 x 28 5mg packs and 11 x 28 1mg packs. Am going to work a regime next week as we leave on the 5 dec and come back 8 feb. As long as I cope in Australia I will be happy. It’s easier to feel bad at home. PmrPro said dasgupta isn’t brilliant. I had assumed he was as part of HealthUnlocked. Will have to research in feb. Thanks as usual for your help
His "thing" is GCA - and he IS good at that.
oh ok. I’m not going to get that 😀
That is quite a stockpile …. hope you can get them to last and they work for you.
You can always ask for recommendations on forum whilst you’re away, and have a plan in place when you get home.
Enjoy Australia….
It is. Every time I could renew prescription i did even when I didn’t need to.
thank you I will do that.
PS - try to see a different doctor and tell them you need pred cover to take with you to Aus as the risk of adrenal problems is very real, especially with the stress of travel.
I’m hoping the amount I have stockpiled is going to be enough. I have three packs of 28 5mg and 11 packs of 1mg. I leave on the 5th dec so will start a regime with what I have and hope I’ll be ok. Don’t know who to see now when I get back after reading reply above from Dorset lady. I thought dasgupta would be good. Will face all that when I get back from Melbourne early feb. As long as I feel ok away. Thanks for reply as ever. I might go into remission 😂
Since you have packs with you you might well be able to go to a pharmacy in Aus and get emergency "replacements" (I dropped a new pack in the loo/down a drain/the dog chewed them". You would here I think. But here you would have no bother getting them from a GP either.
good idea. And I think I have read on here some time ago someone bought them in Singapore airport. We are going via Kuala Lumpur this time but thought I’d look there. Apparently you can get antibiotics too which might be useful for my recurring uti!
Have you tried D-mannose for the recurring UTI? It can work very well rather than using abx - although when you use abx you need proper courses, not the 3 days some doctors think is safer in terms of abx resistance. It isn't if the short course doesn't kill off ALL the bugs - they multiply with a renewed appetite for that antibiotic.
funny you should say that. Have just started using that last couple of weeks. Hate antibiotics. Usually have 5 days but patient info says 7. Clears it for a bit then comes back. I’ve had infections for years.
Then you should be referred to a urologist - recurrent UTIs are a cause for concern and there are various causes, some of which can be sorted out.
Another PS - put a post up saying how far you'd travel and ask for a recommendation. Dasgupta's replacements at Southend seem quite good and there are other options who seem OK.
ok thanks for the advice. I will investigate when I’m away and when I get home
My Original Consultant is at the Countess but l don’t know if she sees PP’s now - she went on Maternity Leave after she’d seen me twice!
No One at the Nuffield l know but GP’s usually know who’s who & who may have a Special Interest in PMR
"My GP would like me to decrease my steroids as they have increased my BP"
Well that's fine - what's he going to do when your PMR gets worse and you can't exercise - that'll will probably send the BP up too? There is a wide range of medication to manage BP - tell him to use it as my doctors do.
The fatigue things is two-facetted: the underlying autoimmune disorder is the main cause f fatigue in PMR and the pred doesn't touch that. Plus at this does adrenal function needs to return, and it may be a bit hesitant.
I am at that stage already as I have severe pain in my back which prevents me walking any distance or standing for long. After seeing a physio and a chiropractor my GP couldn’t offer any advice and at one time my Pred was increased to 20mg without any improvement in the pain. I went privately to an Ortho consultant who suspected Spinal Stenosis but an MRI didn’t show that and he has now recommending physio and pain management.My GP is aware of this but when I saw a different GP at the surgery last week his only advice was to stop my statins that I have been taking for years with no problem and to reduce my steroids although I had told him I was having increased pain in shoulders and arms. Feel it is time I saw someone who knows what they are talking about.
There are things found alongside PMR that don't respond well to oral pred - I have some, and since they are still there with Actemra/tocilizumab they aren't directly PMR. Physio has made a lot of difference but we were debating mre approaches today though they are difficult to access on the UK (I'm in northern Italy).
I can relate. Initially I saw a rhuematologist privately at the start of PMR in March 2019. My GP had already suspected PMR and started 20 mg Pred and bloodtests. I then went on the NHS list and have been managed by my GP and 6 monthly Rhuemy visits. Meanwhile I also developed spinal stenosis and underwent surgery after an MRI showed it was very bad, with possible cauda equina symptoms without surgery. The surgery was successful and I have resumed my job of exercise instructor. My PMR is still with me. I recently had a flare involving wrists and hands and am back on 9.5mg. I don't know if any of this helps, but I would suggest a private rhuematologist appt would help you know how to proceed. Good luck.
Thank you and it is encouraging to read your post. I am in the process of getting a referral from my GP and will then book an appt with a rheumatologist at The Spire Hospital Wrexham.
I think you contacted me about 7 months ago?
I may have posted then as I was and still am having severe pain in my back and legs. I then saw an orthopaedic consultant privately at the Nuffield and he suspected spinal stenosis. An MRI didn’t show this but degenerative changes in my spine. I am seeing a physio for help with this but the PMR is causing pain in my arms and shoulders and I would really like to see someone who can give me advice about this. The combination of the two conditions makes it confusing as to what is actually causing which pain and none of the GPS at our surgery seem to have a great knowledge of PMR which is shown by telling me to reduce my steroids because of my BP which has been affected by the steroids soon after I started them. I have today found a consultant at the Nuffield who lists PMR as an interest and have asked my GP for a referral letter.
Reading your story do you really need a rheumatologist, or a competent gp who understands pmr & it’s treatment….From jan 21 to 7.5Mgm now isn’t bad going but it seems you’ve dropped a bit too low to control the inflammation, hence your symptoms. You certainly need better bp control, an increase in dose or adding another med needs considering. Is there another doctor at the practice you could see? Hope you get sorted I’m ch5 but don’t know of any decent rheumatologist sorry.
Adding another med requires a rheumatologist to initiate it.
Agree with you as I have been on BP medication for years and once I started on steroids my BP increased, An extra BP medication has been added but it is still high. Really feel I have been left to manage this more or less by myself and have asked before to be referred to Rheumatology but was told it wasn’t necessary. Also have had to pay to see orthopaedic consultant about the severe pain I have in my back and to have an MRI which showed degenerative changes in my spine. I cannot walk any distance or stand without being in pain but have had no action from my GP on this. Have now asked my GP fir private referral to a Rheumatologist at the Nuffield. I do not have health insurance but feel I need to sort something out because it is really affecting my life,
Yes I do think private referrals is money well spent in the absence of anything else. Sadly we do have to manage our own bp these days. Don’t hesitate to rattle the bars though if it doesn’t come down to 130 ish systolic, look up the Nice guidelines if you have to contact the doc again. Wish I’d done that, I now have heart damage due to untreated hypertension.
I found an acupuncturist (by looking at the registered website) and the pain relief gained was worth every penny.
My OH went to Spire in Warrington (We live in CH64). Good rheumy dept there.
My BP was 182 systolic at my last rheumy appt. He said it was nothing to worry about. However I had literally just run to the appointment (well walked as fast as I could) as I was late. I was called straight in for the usual BP check and they insisted on doing it immediately with no time to relax.
I asked the surgery pharmacist for a BP check at the surgery. It was 150 but again they only did it once. Nothing has been done to follow this up. When I check it at home it's usually 135ish. I was already on amlodipine 5mg and have been for 6 years.
Whatever time I check mine I find the first reading is significantly higher than the second, he 3rd may be lower still, And then if I keep checking it stabilises at about the second reading. It doesn't matter what level it is at - after activity it can be systolic 135 or even 140 but then settles to 115, In the morning it can be 100 or as low as 90. But diastolic (the lower reading) is in the 60s almost all the time.
That sounds really good. Mine has always been 135 or higher, even in my 30s. Diastolic usually 87 ish.
I'm on bisoprolol - was on 2.5mg in the morning and 1.25mg in the evening since last October. I was put on tocilizumab in April and that usually raises BP so I left the dose even though I wasn't convinced I needed it. But as the pred has gone down, so has my BP and I've just stopped the evening dose - BP looks a bit more exciting in the late evening now! It was 95/55 or thereabout rather too often
I'm also on bisoprolol, 2.5mg. Strangely, as I have reduced my pred dose (from 40mg to current 6/7mg), my BP has increased. As has my anxiety in the middle of the night!
How bizarre! No other symptoms of a potential flare? Vasculitis can cause raised BP ...
Night-time anxiety? Palpitations or anything to go with it?
No palpitations since I reduced my dose - they were bad at 25mg upwards. No potential flare issues at the moment, I feel really good, but get yawny first thing (I wake up at about 5.30am) and at 5pm ish. But I then wake up again and keep going till midnight! I have never napped, even as a baby. I think I get my anxiety from my Mum, who was always anxious, and I didn't realise, as I had grown up with it, just how bad it was until she was admitted to a psychiatric ward aged 88, (after my Dad died) and had ECT for psychotic depression. It changed her completely. Suddenly there was this chilled, happy person I had never known. But I guess her behaviour rubbed off on me as a child.
This is a real conundrum isn't it. I started on 60mg pred back in December, 2020. Added weekly Actemra in Feb, 2021. As I tapered and was really hoping to get to zero pred by the end of the year, when I got to 3 recently I began to get lots of pain in upper shoulder, especially left side, and neck pain that seemed to shoot up into my head, I could not get sleep and the whole thing really worried me. I feared a flare of my GCA, upped to 5 pred for a week, saw no improvement. When I saw my rhuem dr, he was confidant that I was only experiencing age related spine detioration. He sent me to a pain doc who prescribed physical therapy and last Friday gave me 2 shots in my upper back. So far, not much improvement . The night after the shots I had a good night sleep. But then the old pain was back and it remains. It's interesting to me that lots of folks who begin to get low on pred experience upper back and neck pain. And if you google what to expect when you taper they always suggest upper back, arm and neck pain. But, what the heck? Am I just supposed to tolerate that? Actually, I can, except at night.
Have you looked at sternocleidmastoid pain? And associated stretches.
physio-pedia.com/Sternoclei...
Reading it all sends a load of lightbulbs on for me and PMR and reducing pred!!
I am so sorry to read of your plight.I would strongly advise paying to see a rheumatoid specialist if you possible can. It is worthwhile as you can be seen very quickly.
Best wishes to you.
Someone who is good at rheumatoid arthritis isn't always the best person for patients with PMR
Hi Jomaur, I paid to see a rheumatologist as the wait was too long. Best thing I ever did, cost me £170 and £100 follow up. I am still in his care and would rather pay than keep waiting. It's tough but worth it
Please be aware that there are a lot of additional costs on top of the consultation price. Blood tests, a DEXA scan, etc can be very expensive. If you have an injection during your consultation, that will be a large extra too. You may be able to get repeat prescriptions via your NHS GP but you now have to pay for the first item. You will need follow up appointments too which will be slightly less expensive but a lot all the same. I have just started to use a TENS machine for my back pain. Having thought it would do no good at all, it is proving very beneficial. I bought the cheapest which is £15. No drugs are involved so if it doesn't work you have done yourself no harm. I really hope you find a good solution to your problems.
I have had PMR for nearly five years. During this time I have had just one telephone ‘consultation’ with a local NHS Rheumatologist. Waking up in August at dawn one morning. and feeling apprehensive about my PMR, I decided to see if I could get an an appointment, privately, with a Rheumatologist. I got to see him within three weeks of my call and his charges were very reasonable. Professor Dasgupta at Southend was very good. Reportedly THE expert on all things to do with PMR. He was able to put my mind at rest and I will return. No waiting around for months and months. It is my opinion that GPs really do not know that much about our condition! Fortunately more and more research is being conducted on it, as time goes on. 🙂
I'd disagree - he is the expert when it comes to GCA. There are better experts in the PMR field in the UK who are actively involved in research.
Oh, I didn’t know you had been to see him as well. I did use the word “reportedly” about his reputation and my experience of him was very good.
I have met him because of the charity and worked alongside others in the research field. I would say that Prof Sarah Mackie in Leeds is the absolute tops in PMR, Max Yates in Norwich a close second. There are a few who are pretty good but that pair see stuff behind the scenes too!
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