Doctor, newly diagnosed with presumed PMR, my experiences for interest.
Posted , 23 users are following.
Hi,
56 normally v fit consultant in NHS.
I noticed relatively rapid onset of very painful quads muscles at night on holiday after some intense exercise with a lot of stair climbing. Initially thought I'd just overdone things but there was no improvement after a few days as expected. Over next few days the symptoms became progressively worse causing waking in the middle of the night due to the pain. At its worst I simply had to get up for around an hour making tea and waiting for some relief with more NSAID's. It was very difficult to turn in bed and hard to get up in the morning due to the pain and stiffness such that I couldn't bend to pick things off the floor or tie laces without great difficulty. Symptoms were predominantly muscular and spread into the upper arms. Quite a lot of pain began in the gluteal muscles spreading into the hamstrings which made sitting uncomfortable first thing in the morning. Even walking was difficult in the mornings although things improved progressively throughout the day and with the help of NSAIAD's I was not too bad at all by the evening many days.
At around this time I also developed very sore left wrist on the opposite side to the thumb which stopped me playing golf as I could not grip the butt of the club due to the pain in my palm. As I had an old injury in this wrist which occasionally flared up I did not initially connect this with the other symptoms. I think I had also lost a little weight.
Initial thoughts were Lyme disease or Leptospirosis contracted on holiday as I had been in a prevalent area and swam in some lakes. I started Doxycycline whilst awaiting serologies at the advice of a colleague in view of the need to treat both of these diseases early.
I continued struggling into work for a couple of weeks until I finally realised I had a real problem which was causing significant sleep disturbance and consulted my GP for the first time in ages. He decided on urgent Rheumo referral although at that stage I thought it was a bit of overkill (what do I know!), still expecting things to somehow wear off spontaneously. I think he could see how ill I was more than I had realised myself.
The Rheumatologist sent the full battery of bloods but at this stage was not entirely convinced it could be PMR partly due to my age which is a little young in comparison to the majority of cases and initially prescribed stronger NSAID's together with an acid suppressing drug to help prevent gastric ulceration.
ESR and CRP were slightly raised which he felt was significant in view of my otherwise good health.
By the time of a review with the Rheumotologist 10 days later it was clear the Doxycycline had made no difference and the infectious causes of my symptoms were ruled out by the bloods. By this time both he and myself were considering PMR as the most likely diagnosis and I was ready to start steroids without further delay as the symptoms were causing such discomfort that I was really struggling to continue working.
The night after starting 15mg Prednisolone was the best night I had slept for over a month although the symptoms and morning stiffness were by no means gone.
I have now been taking Prednisolone for 9 days and am feeling a lot better. the nocturnal muscle pains have almost completely gone. Energy levels are improving, I have greatly reduced the amount of NSAID's needed to keep me going.
The painful left wrist is only improving slowly and I have had to buy some support splints to help with this.
During this illness I have tried to keep swimming which I think has helped me cope with some of the symptoms and maintain muscle muscle tone and flexibility.
In conclusion I think I have been suffering with PMR and have been fortunate to see a reasonably rapid response to steroids at not too high a dose. The diagnosis can be difficult and it can take quite a while for you to realise yourself that you are actually ill and not just suffering the effects of aging or OA flaring up.
I hope this perspective from a medically qualified patient may be of some help to fellow sufferers in making sense of their symptoms and getting diagnosed.
TheRadman
6 likes, 63 replies
judith90525 TheRadman
Posted
Thank you Radman for your detailed experience of being diagnosed with PMR. I have heard of people under 50 with PMR.
Are you aware of Kate Gilbert's book Polymyalgia Rheumatica and Giant Cell Arteritis a Survival Guide? I think you would find it helpful.
It's possible starting on 15 mg may be a little low but if the pred is dealing with the symptoms stay with it.
Also look up the tapering system on this forum DSNS when you start reducing. The worst thing you can do is taper too quickly.
Good luck! !!
TheRadman judith90525
Posted
Thank-you Judith. This morning I'm not so good with feelings
like a bad muscle strain in both hamstrings and a lot of stiffness in the hips and shoulders so I have decide to nudge up the pred to 20mg to hopefully get on top of it as 15 mg doesn't seem to be enough.
BettyE TheRadman
Posted
My sister was diagnosed Dec 2017 and started on 15 but, like you, found it was not enough to control the symptoms. Her GP upped it to 20 and, with minor glitches, she is now down to 8mgs. and still comfortable albeit with less than her usual energy.
Hope you are as fortunate.
In case it's of interest both my mother and I had PMR.
ptolemy TheRadman
Posted
Welcome. I am so sorry you have been diagnosed with PMR it is not the most pleasant of diseases. You are on the young side of the average age, but you will find quite a few people on this board in their 50s. I am surprised that you say Ibuprofen was helping as in general the only thing that helps PMR is steroids. As you say you are running down the NSAID now anyway, steroids and NSAIDs are contra indicative. You may still need a PPI though if you are taking the uncoated version of pred. although some people get away with yogurt. I am so glad you had a good response to steroids, mine was magical, from being virtually unable to move I was actually back to being able to get on with life in about 15 hours. 15mg seems to be the normal starting dose, although some people do start at 20mg. I love swimming and it is something that I have continued to do since being diagnosed.
andy34717 TheRadman
Posted
Hey TheRadman,
Thanks for the insight from a medically qualified patient...I too experienced a very similar situation to how you described.
I am 47 and was otherwise in good health and with no major worries or stress. I was working on swing changes to my golf with specific gym workouts to support the new thinking. I put the muscle soreness I had developed in shoulders, glutes, hips and hamstrings down to this new regime and only after many months of pain and severely disrupted sleep and taking lots of Ibuprofen which seemed to help a little, I eventually booked an appointment with the GP...who initially like your Rheumy wasn't convinved it was PMR due to my age.
After various blood tests and a very supportive GP, PMR seemed to be the most logical solution prior to seeing the Rheumy so I was prescribed Pred and the sleep that first evening after taking 15mg at 6pm was amazing. That was the beginning of Sept and now I am waiting to see the Rheumy in early Nov...8 weeks waiting time!
I have continued with golf which is a blessing as I was getting worried about not being able to play to keep fit and have also started some HIT fitness to get back into my exercise regime and help with the overall fitness dealing with PMR.
I have already started to taper down the Pred and from 15mg 6 weeks ago I am now on 10mg starting this week (taking 5 mg last thing at night and 5 mg first thing in the morning)...hopefully this isn't too quick a reduction but will carefully monitor as I progress.
Cheers,
Andy
TheRadman andy34717
Posted
Hi Andy,
Glad to hear you're getting better with the steroids, it must have been miserable suffering with these symptoms for several months.
In my opinion there's no reason why a confident and competent GP shouldn't diagnose classical PMR and start treatment with prednisolone at the recommended dose of 15 - 20mg in otherwise healthy patients and its good that yours did seeing as you are still waiting for the rheumo appointment. I'm afraid the NHS is struggling to keep up with the increasing demands of an aging and expanding population which have not been properly planned for (its more than just about the money).
More complex cases with pre-existing conditions increasing the risk of steroids are probably where specialist opinion in diagnosis and management would be most valuable.
I was fortunate in having medically qualified colleagues which got me into the system although I did not ask for special treatment but the initial concern was an infection which needs quick treatment which helped accelerate things in my case.
Best wishes for a rapid and complete recovery, get that handicap down!
The Radman
EileenH TheRadman
Posted
Thank you and welcome.
The AVERAGE age at diagnosis is over 70 - but that is NOT the sort of age that PMR manifests whatever far too many rheumatologists will tell you. The guidelines all over the medical literature now say "Over 50" and there are some cases younger than that - and I believe there would be more if doctors were less blinkered with the attitude "it never happens in under 50s so it can't be - must be fibromyalgia or depression or somatism, or menopause..."
I was not diagnosed for 5 years, it started when I was still 51 and was finally given a name at just 57. I then experienced a miracle in under 6 hours to 15mg of prednisolone. My ESR/CRP markers were never "out of normal range" so no-one remarked on them but they were raised for me - MY normal is in low single digits, for much of a severe flare 5+ years ago the ESR hovered around 16-18, raised but not out of normal range and the CRP has only once been raised - it was back to normal a week later.
Have you seen the latest international Recommendations? There is a link in the middle of this post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
which is a collection of good links relating to PMR and GCA, many from the medical literature and which experience has shown are realistic and reliable.
Although none of us here has a medical degree, I and a few others are closely involved in the UK PMRGCA charities and research groups and some of us have attended OMERACT meetings as Patient Research Partners. Welcome - and we do hope you will remain and learn in order to pass on your knowledge to other doctors to improve the patient journey for quite a large proportion of over 50s! Especially it must be said with regard to GCA which STILL poses a major problem in getting timely intervention despite our best efforts.
TheRadman EileenH
Posted
Hi Eileen,
I agree with your comments about doctors being a little too influenced by the modern guideline-driven culture now prevalent and which definitely inhibits the free-thinking needed to consider appropriate clinical diagnoses in patients who fall outside time-honoured parameters in terms of age in particular.
Like yourself my ESR and CRP were only slightly raised which indicates they don't need to be sky high in PMR and therefore shouldn't be used to exclude consideration of the condition in the presence of the relevant clinical symptoms. Equally it seems the relative levels of these inflammatory markers are not a good predictor of likely response to steroids although I presume there will be evidence of this in the published literature which I confess I have not yet had a look at.
I am concerned to hear patients are still getting difficulty in timely intervention in GCA which all doctors should be well aware is a serious condition which requires rapid institution of high dose steroid therapy in order to reduce the risk to vision.
I would recommend anyone in this situation with the appropriate symptoms should attend an out of hours urgent care centre where available or A&E if experiencing lack of timely management in primary care, which is the advice I would expect to be being given via NHS 111.
ptolemy TheRadman
Posted
Sadly the people who get GCA and suffer blindness normally have never heard of it and so would not know to go to A&E. I am none too sure that 111 would necessarily be that astute either! I actually found out from my optician when I was getting my eyes tested who in fact was very knowledgeable.
I only have PMR and was told by my GP that I had a virus. In the end I was in such pain I went to see a rheumatologist privately. My GP had told me it was nothing serious and it would go away. If only!
EileenH TheRadman
Posted
"I presume there will be evidence of this in the published literature " - not that I have found! In fact, somewhere there is an article which admits there is no way of predicting the course a patient will experience on the basis of pre-diagnosis tests. And no, of course I don't have a reference!!
There are patients on the forums (there are 2 big and active ones in the UK and a third, now far less active one as a result of host problems) who have been to A&E with visual symptoms and who have been told it cannot possibly be GCA and one who was laughed at in her face by a nurse and told to stop wasting their time. I know I have potentially saved patients from loss of vision by nagging them to go to another doctor or larger hospital where likely GCA was confirmed. In one case in the west of England it was supposedly a rheumatologist who told her it was nothing, take an ibuprofen, and the consultant she was under at the bigger hospital went ballistic after she found someone to take her the 30-odd miles.
I spent 5 years with textbook symptoms of PMR but no raised blood levels - in retrospect it is extremely likely I have LVV with borderline cranial GCA as I did have jaw claudication and scalp pain for a while and severe thigh claudication. Christian Dejaco and Sarah Mackie both agree (they are names you will come across I have no doubt). To some extent I have myself to blame - had I toured every GP in the practice I might have had an answer earlier since one lady GP was absolutely with it on PMR at least - but she was part time when she wasn't on maty leave and getting to see her was next to impossible. When I did see her the script was written before I sat down - no questions ever answered. A colleague of my husband at the local hospital had dismissed my complaints as OA - she could "feel it" in the right knee. Fourteen years later there is no evidence of OA on the recent x-ray that was done because of knee pain. PMR is the poor man (or woman) of rheumatology - and the GPs all too often haven't a clue. Younger ones are definitely improving though - the crusade of the last 10 years has helped I think.
Where in the UK are you?
TheRadman EileenH
Posted
Hi again Eileen and ptolemy,
you both make important points about what seems to be a serious gap in awareness of both PMR and GCA amongst both the public and less excusably amongst medical practitioners in positions likely to encounter patients with these conditions. This in my personal view particularly includes those without primary medical training such as nurse practitioners working in A&E who arguably should not be in a position to try and make primary medical diagnosis and discharge patients without qualified medical supervision. Hence the importance of the work done by the charitable organisations you refer to attempting to remedy this and which I fully support.
I well recall learning about the conditions during my basic medical training in the 1980's although I went on to obtain the higher qualification of Membership of the Royal College of Physicians.
I am located in the N.E. of England.
BettyE TheRadman
Posted
I have nothing but praise for the care I have received from my Practice over many years but I feel strongly that both the nurses and patients are being put in an invidious position. Nurses have to choose between over caution or risky assessments both of which will only add to the pressure on the doctors and patients have to judge whether or not insisting on seeing a doctor is justified.
It seems to me that the word profession is being demoted ( that's not the word I want. It'll come to me later! ) It's not just in medicine, either.
ptolemy TheRadman
Posted
I wonder if it is included in all basic medical training. A friend of mine who is an orthopaedic surgeon seemed to know nothing about it, even now he muddles it up with fibromyalgia!
BettyE
Posted
Got it! Debased is the word I wanted.
EileenH TheRadman
Posted
No, sorry, you can't diss the NPs like that I'm afraid - I know NPs who know far more about GCA than some junior doctors. And paramedics in the Yorkshire ambulance service are taught about the signs and symptoms of GCA to consider if they meet a patient with the appropriate presentation. In fact, rheumy specialist nurses are often more reactive than their bosses! You may have been taught about it in the 1980s but there are an awful lot of doctors in all generations who appear not to have been. It does seem to vary from medical school to medical school.
You are probably in one of the PMR/GCA hotspots - Leeds and Gateshead in particular are good - although Leeds does vary from outstanding to questionable in how the rheumatologists deal with PMR/GCA ! Newcastle also has good specialists. But it all depends on meeting the right one even in a single department.
TheRadman EileenH
Posted
With respect Eileen I think I have been misunderstood. I have not dissed specialist nurse practitioners in working in conjunction with Rheumatologists in combined clinics or indeed in any other specialty and also working with GP's in primary care where they make an extremely valuable contribution in ongoing disease management and it was not this aspect of care about which I was commenting. However the treatment offered by one working in A&E to an undiagnosed patient in the case you quoted in your previous post appears far from satisfactory.
However as you point out us doctors should take our share of the blame in failing to make timely diagnosis. Such is the state of medical training these days that it is often possible for a good NP to gain far more specialist expertise in management of specific diseases than the junior doctor working in the same department.
EileenH TheRadman
Posted
Fair enough, I'll concede that. However, patients would not need to go to A&E as much if the GPs were capable of recognising when they need help and far too often they aren't. But it is all going to get worse - so heaven only knows what options can be introduced.
A close friend and research colleague of my husband who is a medical school lecturer was telling us recently that medical students are no longer taught physiology: they sit around discussing it. If they don't understand normal physiology how can they identify pathological physiology?
TheRadman EileenH
Posted
Don't get me started on one of my pet topics about dumbing down of training! I am a product of the traditional medical training heavily grounded in biological sciences and based on the experiences of a 30 year career since qualification all the better for it despite probably being considered a dinosaur by the modern medical educational establishment. Modern training is all about ticking boxes regarding 'competencies' but those who designed it seem to entirely fail to understand the negative effect it has on grossly narrowing down horizons and professional curiosity. How can you inspire or expect excellence when all you ask for or allow trainees to demonstrate is a tick in a box?
On the positive side trainees are still generally bright and motivated individuals and the ones I teach usually respond well to meeting a dinosaur like me who challenges them rather than ladling it out on a spoon once they get over the initial culture shock.
The best defence for the patient in the face of this is to be educated enough to act as their own advocate, ask the right questions and be able to realise when they are being fobbed off. And remember you have the right to ask for a second opinion.
EileenH TheRadman
Posted
I couldn't agree with you more! Actually, thinking about it we must have gone to med school about the same time - first time round I realised medicine wasn't for me after all (though I suppose starving at uni would have been good basic training for medicine today though of course I would have been retired by now just) but my second attempt was also doing physiology in a medical school, My involvement in medical science these days has both my husband and me tearing our hair out at the lack of basic stuff...
VickieS EileenH
Posted
Not o be stupid, but what do the abbreviations LVV & DOMD stand for?
EileenH VickieS
Posted
Large Vessel Vasculitis
DOMD? Do you mean DOMS - Delayed Onset Muscle Soreness
frances80868 EileenH
Posted
I have 30t years as a medical technologists and managed to pick up quite a lot of general medicine along the way. I diagnosed myself. Over a period of two months I had intermittent fatigue and discomfort in my gluteal muscles, walking had become a problem. Then, over a two week period, my uppers arms ached very badly, all day lond and putting on a coat became difficult. I thought this just hasn't normal so I went to Google. I fit the profile, the only symptoms I didn't have were nausea and fever, I did a lot of research before making an appointment with my GP. My serological test results were inconclusive, not at all unusual with these auto-immune disorders, but my doc is a good diagnostician. Put me on prednisone and voila ... a miracle. I am very fortunate to have the background in medicine plus a very receptive doc. I'm 11 months in and down to 10mg daily. Life is much better now. Not where I'd like to be but I'm hoping.
EileenH frances80868
Posted
I don't think I ever had nausea and fever - sweats yes, but I don't remember anyone ever remarking about fever. I think they are more common in GCA and possibly LVV.
Yes, it scares me how much ends up being missed because the patient needs a medical background to know they have something that needs to be investigated!!!!
VickieS EileenH
Posted
Before my diagnosis, I had a very low-grade fever for a long time & felt slightly flu-ish. When I was still struggling to figure out what was wrong with me I did mention this to the doctors but it was so low grade they didn’t pay much attention to me, but I knew it wasn't normal for me.
EileenH VickieS
Posted
Which are absolutely typical textbook symptoms - doctors seem to be very unaware of their clinical medical training...