Sounds like PMR. Perhaps you should go back to your GP & say the pain is unbearable so could you please go back on steroids. Once you have been on steroids your ESR is unlikely to be raised so doc should be aware of this so no point doing test again. Tell this to your GP and say have learnt this from friends with it.
Unfortunately younger people can get PMR. We non of us want to be on steroids but anyone who has not experienced the crippling pain of PMR cannot imagine how awful it is & the almost instant relief within a day or two from a higher dose.
We often have to educate our GPs if they have little experience in this area as there is no one prescription fits all.
Many people are lucky & only have to be on steroids for a year or two but sadly not all of us. You are the only one who can gauge your pain level not your doctor. Good luck!
Gonegirl, the symptoms you describe and the fact that your 15mg steroid starting dose "worked wonders", sound very much like PMR. Plus, although PMR mostly occurs in the over-50's, that is not cast in stone and we hear of quite a few people succumbing in their 40's. Having said that, I have come across someone around your age in the past who was believed to have been suffering from PMR but the steroids at the higher starting dose didn't work for her and the diagnosis was eventually changed to that of hormone deficiency.
Being at 2mg after just a year since commencing steroids doesn't sound like you have tried "to reduce slowly" and, in the case of it being PMR, then your somewhat fast reduction will, no doubt, be the cause for the "flair ups" you have been experiencing. Flares in the inflammation can be quite common in the first 12-18 months following diagnosis - the steroids aren't, in fact, curing anything but are just keeping the inflammation under control until PMR goes into remission, and that can take anything from two years upwards - only a very few very lucky people manage to recover in a year or so, and very often those who do are more likely to have a relapse.
My heart goes out to you if this is PMR and you are being advised to stop steroids, especially as painkillers rarely, if ever, help to control the pain involved. Can you not bring that rheumy appointment forward or, better still, ask for referral to a different rheumy for a second opinion?
Have you had your ESR and CRP blood tests done recently? It would be a good idea. As someone said reducing so fast in such a short time if you do have PMR could cause a lot of pain. Are you able to increase the dose of pred?
Hi gone girl, take a look at my posts....I have just come out of hospital after a two week stay . I'm 45 and my rheumatologist believes I have PMR. I'm on 20mg of Pred a day which on the whole has been keeping on top of the pain most of the time. My rheumatologist said I was young to get it but he has come across other patients in their forties.
I agree. Saying that I saw a neurologist yesterday who thought I was too young to get PMR! It seems to be a rare occurrence and I guess we are not classic cases.
I do sympathise with you having to gradually stop taking the steroids when they give you such relief from the pain BUT, if the Consultant Rheumatologist thinks it MAY not be PMR & he/she can only diagnose without the steroids effect, then I think that is very important. What is important is to get the CORRECT diagnosis & the CORRECT treatment, I'm afraid. Steroids are dangerous drugs & may mask the progress or deterioration of a condition, so relief of pain has to be achieved in another way without steroids till a CORRECT diagnosis is made. So, grit your teeth, be patient & have faith in the Specialist. Good luck !
in reply to
I couldn't agree more junechopin. I had all the classic signs of PMR/GCA aged 47 and was treated with prednisolone ( plus DMARDS ) for 2 years. My diagnosis was never clear and after being assigned the " significant psychosomatic illness " tag I decided that the only way I would get any clarity was to wean myself off pred.
Boy was I sore for a few months but ultimately is was worth it as a CT/PET and MRI confirmed that I had a spondyloarthropathy / Behcets syndrome crossover and I am now receiving biologic drug infusions.
My pain disappeared within a few days on prednisolone and I couldn't believe how much difference 1mg of pred made to my symptoms. I only had very slightly elevated CRP and ESR.
The problem is that all of us can only speak from our experience, my experience has taught me that diagnosing and treating auto immune/ auto inflamatory disease is a mind field as there are so many mimics and all these diseases share common features and respond to prednisolone.
I am not saying that it's not PMR but in my experience responding to 15mg of prednisolone doesn't automatically mean it is.
What interests me though Keyes is: how did you get investigated further. Was it because you couldn't reduce the dose or pred? I got down to below 5mg with no return of PMR symptoms, just unbelievable fatigue, but am back to 15mg with a flare that is pretty much identical to how it all started 12 years ago. Now I'd quite like some more interest - not forthcoming though.
One of the first things my (not very interested) rheumy wanted mine to be was spondyloarthropy but ruled that out pdq (not sure on what basis mind). He wasn't interested enough to look for anything else and I've certainly never had PET offered, never mind done.
I was investigated further because I researched my symptoms +++ and had an excellent GP who was very sceptical about the psychosomatic tag. He referred me all over the UK ( at my specific request ) and eventually I collected enough jigsaw pieces to make up the whole picture.
I returned to my local Health Board under the care of a new Consultant Rheumy ( Leeds trained ) who took me seriously. Unfortunately she went on mat leave and despite leaving a very detailed summary and plan in my notes I was placed at the mercy of Locums who couldn't agree. One of them sent me for an MRI and CT /PET ( partly to get me out of his office, we had been arguing for 30 mins at that point ). They then argued about the scan results and at that point I made an official complaint about the lack of continuity in my care and the differing opinions. The complaint concentrated the minds and I saw yet another Rheumy who confirmed what I was saying for over a year, that I had a spondyloarthropathy / Behcets crossover. As I weaned the pred I developed new symptoms which I put up with as I knew that the pred was effectively masking my symptoms. I had been asking for a CT/PET for a while and knew that I had to be pred free for it as even low dose pred suppresses the PET signal. It was my decision to come off pred and I don't regret it for one minute even though it felt like torture at the time, it was essential to get my diagnosis.
All this occurred over a period of 4 yrs, I am trying very hard not to be bitter about the effect that it has had on my life ( developing blepharospasm and my recent job loss ). Infliximab has made a difference but hasn't proved to be the wonder cure that I hoped for ( naively! ). My bottom line was can I live with these symptoms, the fact that I couldn't prompted my quest to find answers. I realise I was lucky and had the knowledge, support and resources to do what I did, I just never gave up.
No-one here questions whether or not you have the symptoms you say you have - that is at least very much better. I'm sure the original GP in the UK had somaticism down for me but I have never seen my notes and I imagine they are in some NHS graveyard now!
The rheumies I've met here do seem quite different to some I've come across in the UK though. I'm not saying they are all good/bad in either system but I did meet some quite disinterested ones in England (for want of a better term).
Does pred stop the PET signal at any dose? What would happen during a (say) GCA flare that was breaking through the low dose that had been managing long standing PMR?
I have to admit to being just a tad sceptical about biologics - certainly don't think they are a 100% miracle and am particularly sceptical about the claims being made about tocilizumab and PMR. GCA maybe, but I'm looking forward to seeing the real evidence.
Biologic drugs have made a massive difference in ANCA associated Vasculitis allowing many patients remission and to come off all other immunosuppressants.
I don't know at what dose pred affects the pred signal, I am convinced that nothing would have shown on my scan if I hadn't weaned myself off them. There is a school of thought that says no point in PET scanning if CRP isn't elevated but mine wasn't at the time.
I think that individuals attitude to drugs and risk is fascinating. I would much rather be on a biologic than prednisolone and count myself lucky that I have no lasting effects from my 2 years taking it. I realise this is a very personal opinion but interestingly when I saw the UK Vasculitis expert in Jan he felt that I was right to limit my exposure to what he called " toxic " drugs, he doesn't include biologics in that list!
Don't get me wrong - I do appreciate the value of the biologics and don't regard them as toxic, I just don't see them as perfect either and I do have friends who have either found they don't work or who have had nasty side effects!
There has been a study going on with tocilizumab for GCA - but whatever the results, there is no way the NHS will approve it or any other biologic for PMR. They are even trying to get out of approving it for GCA while saying in the consultation that they would conditionally approve it for Takayashu's arteritis which is, to all intents and purposes the same disease apart from age of onset. I am on a form of pred that is far more expensive than normal pred - but I don't have any apparent side effects which I did with other forms of pred and that was part of the hope with the formulation, that a lower dose would be effective. No chance of being able to have it in the UK though.
So, since my choice is a toxic drug that works or no drug and be unable to move and in constant pain - what would you do?
Of course I would do what you do! My experiences shape my view of things, prednisolone isn't used for spondyloarthropathy because the disease itself predisposes the patient to oesteoporosis of the spine. I am not saying that pred is all bad but do believe when there is an alternative it should be considered.
I've just been taking your name in vain on another thread - hope you don't mind! Kate Gilbert had been warning that anyone with "?PMR" who is under 50 is "very rare" according to the experts so it is less likely to be something so rare - so I pointed out you managed to acquire a dx of something even more rare!
I would dearly like to have more investigation of whatever it is I have. I don't think it is "just" PMR, although it is well managed on under 15mg pred. I have crossover symptoms that suggest a vasculitis of some sort, probably GCA affecting thoracic arteries. It started when I was about 49/50 and eventually progressed to the classical but invisible PMR symptoms, except for raised acute phase markers, so was told I didn't have anything wrong with me.
I couldn't get anyone to take that seriously originally - never mind anything else. I have what the local doctors accept is PMR, not that they have investigated to confirm or otherwise, so GCA would be a reasonable suspicion at present - but I don't have a headache. GCA is far more than just cranial inflammation.
The more I started to look into the various auto mine diseases the more I realised how complex it all is, I certainly led myself up the garden path a few times diagnosis wise.
I have a real mix of symptoms, underlying it all is the spondyloarthropathy ( HLA B27 positive ) which is the most common type of arthritis although I presented in a very atypical way. My GP commented the other month that I seem to get all the " obscure " symptoms/ diseases ( blepharospasm and dilated thoracic aorta ). I am just happy to be on treatment that is making a difference and not to be labelled with a somatic disorder!
I can understand your need for more investigation and definitive answers.
Interestingly, there is a brand new book on PMR and GCA from Dasgupta and Dejaco just out. Dejaco was the lead author on the 2015 EULAR/ACR Recommendations - and he actually lives just down the road from me! Our local hospital is desperately hoping to entice him from Graz in Austria to come to be Head of Rheumatology for the region and the Head of Medicine (who takes PMR and GCA as his main hobby so I see him) has promised to introduce us. At my last appointment with him he spent half the time printing off stuff from the library for me...
Here Here.....I am being encouraged by my GP to accept a negative biopsy result as final proof I must not take Steroids. Considering I have another disability that could be irrevocably affected by the treatment!!! And from past experience, even when steroids are used for no symptoms at all of anything, they will make one feel incredibly well and hungry (chronic weight loss due to emotional pain) thank goodness they also make one feel incredibly narcissistic as well....???? Cripes, I hope that is not insulting to the peeps who are suffering blindness and the real possibility of blindness...genuine positive result of Biopsy cases...very tricky and I fit into the tricky spot ....bugger....hope you are given enough tools and a definitive result soon ....hugs....
Hello, while the Dr says you're to young my pain started out of nowhere exactly the same as yours. I couldn't walk, get out of bed, groin, arms it was extremely painful and yes the pred worked like a miracle. It definitely sounds like pmr so maybe the age factor isn't really a reliable factor in diagnosing the disease, just because it was thought to effect older people may be the norm but not entirely impossible to strike younger.
I was diagnosed September last year aged 52- symptoms sound very similar- could not get out of bed in the morning pains in groins (this is where it started) arms, hands (could barely use them in the morning). PRED gave instant relief - cant imagine not having it now as I recall the pain- was on 20mg then and am down to 12mg now. As others have said sounds like you may have come off the pred too quickly- I would see if you can take a higher dose and see if it gives relief - and bring the appointment forward if possible as June is a long way off to be in so much pain.
As others have said - it is very likely that yes, you DO have PMR (or something very similar) but it is a chronic disease and can last for years, not just months. One authority reckoned that about a quarter of patients are off pred within 2 years - but are at a higher risk of relapse at a later date. Half need pred for up to 4 to 6 years and the rest of us need a low dose for far longer, some even for life. The standard German rheumatology textbook says it lasts an average of 5 years.
The return of your pain is very likely solely due to the cause of the PMR still being active (PMR is just the symptoms of an underlying autoimmune disorder that causes inflammation of the microcirculation in the muscles (the very small blood vessels) which impairs the blood flow to the muscles so they don't receive a good supply of nutrients and oxygen). The pred helps by reducing the inflammation - which is topped up every morning by a new dose of the inflammatory substances and that is why it tends to be worst in the morning. Since it is a chronic condition you still require enough pred to do the job - it isn't like in a chest infection or asthma where the pred deals with the inflammation and you are fine. The pred manages the problem, reducing your pain and stiffness, until the underlying cause burns out and stops doing the damage.
PMR and late onset RA can start out looking very similar and about 1 in 6 patients who are first told they have PMR later are told that it isn't PMR after all but RA - which is different from PMR in that there is joint damage. It is important to differentiate between the two because while there is no other medication that manages PMR, in the case of RA there are a lot of different drugs which actually change the way the disease progresses and can prevent the joint damage and so the patient doesn't go on to be so disabled as used to be the case. There are other forms of inflammatory arthritis which also respond to the other drugs - but the rheumatologist wants to see how you are without pred because it can mask important signs and symptoms.
It is also possible that some of the pain is bursitis - especially in hips and shoulders. That is often found alongside PMR but can also happen without - and steroid injections tend to be more effective than tablets.
It is difficult to get through to doctors who have not seen you in pain just how bad it is - and since, even with pred, many patients are still very stiff and in pain in the morning it sometimes remains a problem. However - there are research doctors who are bringing this to the attention of their colleagues. it is improving!
Be sure to emphasise to the rheumy how bad it is and how little (no?) effect ordinary pain-killers have. Don't gloss over how you are - it is all too easy to put on a brave face. Something else I'd suggest is taking someone with you who is well aware of how bad you are and get them to take notes. You often miss something the doctor says or the letter they then write to your GP may come out as something you don't recognise at all. That's happened to me a few times...
In my experience, especially following a car crash, whiplash and concurrent dx with Parkinsons and a succession of specialists' reports to do with the insurance et al is that the consultants' reports of one's encounters are littered with misunderstandings, downright errors and omissions - quite alarming really. My present rheumy has actually asked me for a copy of my current summary medical diary which cuts down on the factual errors if not nec. the misunderstandings. Also, the specialists seem to think that a copy of your GP medical records will provide a record of what's gone on. This assumes you can waltz in and see a doctor whenever you want......chance would be a fine thing.
Thank you so much for all your lovely concerns and help.
I live alone so it is great to be in contact with people.
I have increased pred from 2mg to 10mg as I cannot bear the pain any longer.
Still feel like I've been riding a cart horse bare back for 200 miles.
What a cruel and strangely awkward place to have pain.
Does anybody know why PMR pain is there?
I need to get myself together now and walk to the shops to get essentials....am so thirsty and have been drinking lots of sparkling water to quench thirst. Yet I feel like a massive cry-baby as I find it difficult to carry anything.
So sorry this is a pathetic rant .....
but I feel lost and bit depressed as my life has changed so
GoneGirl, a few months ago I happened to see a diagram of the lymphatic system and I was struck by how the major lymph nodes seem to replicate the common sites of PMR pain. I don't know if there is a connection, but it seems there must be, perhaps something to do with the pain-causing cytokines collecting in places where they are not easily flushed out of the tissues? I don't know if any research has been done on this. I do remember how during all my many months of not being diagnosed I wondered why the pain felt like I had been exercising too much the day before, only much worse, and unlike normal muscle pain it never went away.
I hope you feel better after your walk. As long as you take things easy, getting out of the house into open air and amongst people can be very therapeutic. In fact, I'm going out now myself. 🌞
Hello again Gonegirl, and I do so hope that you don't feel so "lost" now that you've found this forum. If you let us know in which part of the country you live, there may be a PMR support group nearby where you can meet up with others who understand what you are going through. I do hope your little walk to the shops didn't prove too painful - walking can certainly help to lift the spirits, due to releasing those feel-good endorphins. Do let us know in the next day or two whether increasing your dose has helped. At the same time, do try and get an early appointment with your present rheumy or referral by your GP to another rheumy for a second opinion.
Not really a totally scientific answer here - but I envisage autoimmune disease as a long set of shelves behind a shop counter and when you turn up to "collect" your disease you are handed a set of signs and symptoms. Then you trog off to the doctor - and, if you are lucky, are handed a label based on what they can identify that matches what someone in the past described in a medical/scientific paper and probably called by their own name. You have a diagnosis.
However, these days modern technology has enable a whole load of pathological things to be identified - that don't always fit with those labels so some things have already been renamed on that basis. It upsets many patients who feel that knowing "what" they have answers their questions. Personally, I'm far less interested in what they want to call it than what they can DO about it.
I don't think that RA is a single disease - I don't think that any of the autoimmune spectrum can be narrowed down that far. A study has been done whereby half of patients were able to get their RA joint pain under control on a strictly vegetarian diet - initially a fast for a short time, followed by strictly vegan for a year. When animal protein was reintroduced, those who had derived benefit from the diet developed joint pain again. Why only half? Because there are at least 2 different facets to RA - and given that some patients do well on drug A. others don't and need trials on a whole range of DMARDs, it suggests there are far more than just 2 versions.
Are some forms of RA an "allergy" problem? Is it, to all intents and purposes, like coeliac disease, an intolerance of a particular food item? Coeliac disease can manifest as joint problems (most people don't know that) or a dermatological problem - but the joint symptoms aren't always recognised until they disappear with a gluten-free diet. Is that actually why so many people claim they feel so much better on a gluten- free diet? Though it might be more specifically wheat or something - my other problem is wheat, I get a rash that itches like mad. No wheat, no rash - but it doesn't appear to make much difference to the PMR and I can eat other grains.
I honestly don't know - but then, neither I suspect does anyone else!
I am not sure that there is " good " evidence for dietary changes alone halting disease progression ( no randomised controlled double blinded trials ). Interestingly a Prof Iam Mcinnes from Glasgow University has been funded to look at ways they can predict what treatments will work for patients in RA, I will see if I can find a link.
As regards dietary measures there is no doubt that a " healthy " diet rich in veg, complex carbohydrates, olive oil and lean protein benefits everyone. As for the diet claims then it needs to be looked at in more detail, the natural history of autoimmune/ auto inflamatory disease is remitting and relapsing, association isn't causation. You would need to take into account a whole host of things such as disease severity, previous treatments and how accurate the diagnosis was in the first place!
There is someone over on the Patient.info PMR forum who is a very sceptical Aussie in Canberra. She has started a very strict anti-inflammatory diet (no idea off-hand which one) after ending up in a real state with ?PMR from a doctor who didn't really know what they were doing. Another doc sent her to Sydney as an urgent case (hardly round the corner) where a rheumy agreed with my suspicion it wasn't "just" PMR. "Unfortunately" she had started MTX before and that had allowed her to reduce the pred dose a fair bit quite quickly - but within a week of starting the diet she felt "different" she said. Her husband's also on the diet and he feels very much better too.
I suppose a great deal has to do with you "normal" diet anyway - if you are chucking out a lot of junk food, especially white flour and sugar you will almost certainly feel better. I don't eat junk - never have really so it makes less difference for me.
Bought lots of sparkling water and the usual nonsense ......
I am so bored of food and shopping and planning. Nothing is really inspiring.
All the decisions you have to make on what's healthy blah,blah,blah
Already said that had increased pred and still waiting for relief. However I have started to itch again. Last time my skin was so sore - itching rash all over my body ... my lips cracked, scalp drove me mad and my usual clothes became uncomfortable.
Another side effect of steroids I was told - hope its not as intense this time.
I INTENSELY dislike being on pred.
Any you out there suffer itchy skin, cracked skin whilst on this med...my bottom lip has already split.
Sorry am such a moan but I have such a lot to learn......this forum is fantastic but there is so much info to process.
Dry skin is another possible side effect of Pred, along with easy bruising and cuts. It can help immensely to keep the skin moisturised and the best moisturiser I found for my whole body through accident when recommended by a podiatrist for the soles of my feet has been Double Base Gel which is available from most pharmacies. If you experience easy bruising then Arnica cream can help - I am never without it.
As for drinking white wine, I preferred not to drink any alcohol whilst taking Pred, although I know that many do, so I wouldn't be very popular if I suggested you followed suit! Some people have found that whereas they enjoyed white wine in their days before Pred, they went off it in favour of the red variety for some reason.
Who wants to reintroduce wheat? Or grains in general really. I am able to eat breas and pasta made with spelt and kamut, both ancient wheats - but a different structure to the grain - as well as rye and do so occasionally as our baker produces their own. I live in the mountains in northern Italy and buckwheat cake is a local delicacy. Quinoa is boring IMHO.
But I actually eat very little carbohydrate of any sort other than vegetables in vast quantities. I don't feel deprived not eating pasta and cake - once or twice a year is fine, pizza once every few months. So I don't really go overboard looking for substitutes - I celebrate the things I can eat rather than what I can't and keep the carbs to a minimum which helps avoid the dreaded pred weight gain. I lost 38lbs while still taking pred by leaving the carbs - so I shan't complain about that!
I agree if something works for you then stick with it. I do think that the psychological benefit of feeling that we are in control of something is huge, especially since our bodies are so out of control!
For the record I do really think about what I am eating and am very interested in diet and health. I set up a Facebook group called Vasculitis Healthy Eaters, there are around 150 members now and we share recipes, food related articles and just generally support each other. 😀
On behalf of PMRGCAuk I have recently carried out a small survey of all the international rheumatologists who, as researching specialists in PMR, served on the international working party for PMR guidelines. I asked them, given that PMR is regarded as a disease of the over-50s, what we should say to people who get a GP diagnosis in their 40s. None of them consider that PMR in the 40s is anything other than extremely rare. One, Prof. Eric Matteson of the Mayo Clinic in Boston, USA, who is a top researcher, says that in all cases he has ever seen except for one, there was an alternative diagnosis for the patient. An Italian professor (Cimmino) states that in the rare cases he has found there was also presence of large vessel vasculitis on the evidence of a PET scan.
So here on the forum NONE of us are in a position to say 'it sounds like you have PMR'. Anyone receiving a diagnosis of PMR in their 40s should be extremely circumspect about it and not accept it until there is at least one other opinion from a rheumatologist. It is far more likely that you have something else wrong with you than that you have something extremely rare. Don't allow the steroids to mask your true symptoms, and do insist on specialist care.
"It is far more likely that you have something else wrong with you than that you have something extremely rare. "
Quite possibly Kate and I fully take your point. However - since they are taught that PMR and GCA do not happen in under 50s they do not look for it in that age group, even saying that "If you were older I would say it was GCA but as you aren't, it can't be." If they don't look for it, the statistics will never change. There are a few papers in the medical literature that expressly warn about not considering GCA on the basis of age and a couple of years ago a man in South Wales was found at autopsy to have had undiagnosed GCA. He was 37 and had died of stroke due to unmanaged GCA.
On another tack, a colleague of my husband was told he couldn't have a DVT as he was "too young", despite classical symptoms after a footballing injury. He died a couple of days later of a massive PE - due to the DVT he was "too young" to have.
Equally, in the other direction, since she has written about it recently, I'm sure Keyes on this forum won't mind me saying she had to fight to get a final diagnosis. She was diagnosed with PMR initially and it responded to pred but after a lot of hard work on her part and that of her GP, she eventually got a diagnosis of spondyloarthritis with Behcets crossover (if I remember rightly). Which is far far less likely than even PMR in a 45 year old!
Personally, I suspect there are quite a few patients in their 40s with PMR - but many don't get past their GP and are labelled, incorrectly, as having fibromyalgia, CFS/ME, somatization disorder or depression.
Argh, am not very PC literate and can't get my I pad to share the link. If you are on Facebook then just search for Vasculitis Healthy Eaters, send a request and I will add you ( we are a closed group ). 😀
This all goes back to the issue of the auto-immune conditions being so legion that we humans don't yet have the medical knowledge to separate them all out - let alone understand each individual and their response to anything in life! I understand that now the genome code has been cracked more research can be done - but this will probably take a huge amount of time and money and take ages to filter through to all our over-burdened NHS medics. I don't want to be depressing, just want to maybe give a longer view...... By the way - I wonder how many new doctors train to be Rheumys and whether we are going to experience a shortfall in numbers as we see with GPs and the like?
The best we can do is to keep probing, lobbying and reading - and hurrah for this site where we can discuss things - hope there are Rheumys who follow posts here too!
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