Newly diagnosed with PMR in January 17

Hi everyone, I am new today and have stumbled over this forum quite by chance.

I suppose I have been having pain symptoms (which were not controlled by conventional pain relief), for several years. Fortunately for me, I managed to see a doctor who was willing to look into the reasons for my pain.

The results of recent blood tests showed high levels of inflammation and was started on calcium and vit D and 20mg prednisolone, recently my dose was dropped to 12.5mg but within 24hrs the pain and stiffness was back, though maybe not as severe as it was without the steroids. I'm now quite happy on 15mg, though there is no sign of GCA as yet.

Other symptoms include: fatigue, poor sleep, irritability, memory problems, clumsiness, acid reflux, high blood pressure, stress, high cholesterol, lack of interest in my hobbies, heavy sweating especially in the early evening and when asleep, intolerance of cold and damp weather, sudden jerky movements, moderate hearing loss, vertigo.

I am due more blood tests in the middle of April with the possibility of being referred to rheumatology, can't help but think something else may be going on here. I am just beginning to realise- heaving read a few blogs- that PMR is possibly lifelong for some and steroids could be too.

I would welcome personal insights on any of the above.

Thank you Meg.

31 Replies

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  • Your symptoms sound very like some of mine which mostly came from the steroids. It is the sweats I think are the worst followed by the insomnia. Initially I had blood tests every month I am now down to every three months.

    It sounds like you had a massive reduction initially which is probably why you had problems. I am glad things are working with 15mg.

    PMR is in the body for life, but normally goes into remission, in about twenty five per cent of people in two years. Hope you are one of them!

  • Thank you piglette for your reply, it's helpful to talk with people who have PMR, at least you understand.

    I agree sweating and insomnia are unpleasant, yes the reduction was large at first, but then I felt very well and agreed to give it a go, only it was far too much and I increased it to 15mg on my own, then told the doc and that's when he wanted more blood tests.

    I'm glad your blood tests are now every 3 months, sounds like you are doing well and coping, I hope that continues for you.

    I am beginning to realise PMR is for life and its more a kind of adjustment to how you live with it and learn to rest and actually put yourself first, well, now and again anyway.

    Though my journey with PMR has just begun. I hope you go into remission soon.

    Best of luck Meg

  • My sister's godmother had PMR in her 60s it actually lasted about eight years, but afterwards she carried on as normal and is now in her 90s and could be a model for Vogue.

    As you say PMR is a life changer. My GP knows nothing about PMR. I just organise the blood tests when I fancy them. I get on really well with the nurse and I do sometimes get tests I may not actually need as I am becoming a blood nerd! Luckily they have all been OK so far, perhaps I will not be so keen if one is a bit off. What amazes me is that no one from the surgery has commented on the fact that I am organising the blood tests myself. My GP occassionally contacts me if the ESR or CRP are particularly raised. I get them printed out and now have a large pile of paper!

  • Hi Piglette, thanks for responding, it's encouraging that there is light at the end of the tunnel and it takes patience to get there.

    It's great to hear your sister's godmother is well at 90, how fantastic is that!

    Looks like your good relationship with the nurse is working in your favour, the pile of paper charts your good progress, though I'm sure you are capable of adjusting your dose accordingly. ESR and CRP were completely unknown to me until recently, looks like I'll have to gen up.

    Good luck Meggie

  • I have learnt so much since being diagnosed with PMR. I had not been ill since I was ten years old and had measles. Never had an anti biotic or paracetamol in my life. I knew nothing about how the NHS operated even though my father is a doctor and also a lot of my friends are. Mind you I am not sure they know how the NHS operates either!

    The blood nurse and I have long chats about improving the NHS! I think I must make her late for her other clients.

    I think over time you get better at organising your dosage of pred. I have much more of an idea than my GP who only qualified three years ago.

  • You certainly seem to be clued up about your PMR, even though for you the experience was unexpected. I think you are right about a lot of young doctors not even being aware of certain conditions, though my doctor is quite young and when I explained that I had not been taking my statins because when I did it increased the pain I was experiencing from sore to excruciating something clicked and he, at first, thought it was Fibromyalgia, ran the ESR and CRP and, I think was surprised there was anything to report. At the same time he ran the antibody for rheumatoid arthritis as my late mother had that, luckily I don't have the antibody.

  • Hi Meggie and welcome to the right place. I can relate to all the symptoms you mention. I've also got new more restful hobbies, there is a lot of surrendering in this condition.

    I hope you get a good Rheumatologist and that nothing else is going on. All the medicines we're on bring their own lovely side effects into the mixPMR is a self limiting condition, I think the average duration is around 4 years. GCA is not a foregone conclusion of this diagnosis, particularly as you are treating the inflammation.

    Your next job will be to reduce Prednisalone in tiny steps using the Dead Slow and Nearly Stop method advocated on here or some variation that suits you.

    This is a very knowledgeable and caring forum that you've happened upon - use it often.

    Just lately we've had a couple of people successfully off their Prednisalone and to all intents and purposes "better".

    Best wishes! Jane

  • Hi SheffieldJane, thanks for your response, I'm glad I stumbled on this forum, it's so open and warm. Lots of friendly advice and kind words.

    I realise it's a lottery on which health professionals you get to see, so yes, fingers crossed.

    Thanks for putting my mind at ease regarding GCA, was a bit concerned the steroids may mask the symptoms, though I'll still keep it at the back of my mind.

    I've only been on 15mg for one week and feel so much better, so it's very early days yet, and yes I intend taking your advice and reducing Very Slowly, using my own judgement rather than just following doctors orders.

    I was beginning to feel a bit isolated not having anyone to ask obvious or 'silly' questions about this syndrome/condition, not sure if PMR is an autoimmune disease or not.

    Thanks for boosting my confidence and making me realise I should not feel guilty about sitting down and reading or having a quick nap!

    Meggie

  • Yes PMR is labelled as an autoimmune disease. It is difficult when first being diagnosed as most of us had never even heard of PMR before that. The trouble is it seems a lot of doctors are none too sure about it either, although I may be becoming sceptical in my old age.

  • Yes I agree about it being autoimmune as other people have said as much, and already I trust people's opinion on this forum, after all, when you live with something, you cannot help but be very aware of its effects on your physical and mental health. Some doctors may not realise that what you are feeling is real, and not some middle-aged woman moaning. You don't strike me as old, and as for sceptical, a healthy dose of that never did anyone any harm.

  • It is almost certainly an autoimmune vasculitis - but there are a lot of doctors who aren't aware of that despite the evidence having been identified in the mid-1990s.

    ard.bmj.com/content/56/10/576

  • Thanks for the link, will visit soon. I agree that some doctors don't think it is autoimmune, as it has been described to me as an immune response disease, if there is a difference.

  • That sounds a bit patronising - as if we don't know what autoimmune is...

  • Hi MeggieK,

    Welcome to our world!

    This is something I send to newish patients- hope it helps.

    PMR or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure, but the inflammation caused by the underlying illness can be controlled.

    Lots of us are never sure what caused the underlying conditions of GCA and PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessel walls and means that the blood and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiff muscles and fatigue.

    In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it's usually just the shoulders plus those blood vessels that feed your neck, head, and sometimes the Aorta. Serious sight problems can arise if the temporal artery is affected and causes problems with the optic nerve, if that's damaged then partial, or all sight can be lost.if your Aorta is affected it can lead to strokes, aneurysm etc.

    The only drug that controls that inflammation is Prednisolone (Corticosteroids) it does not cure the problem, but it keeps it under control.

    Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes a lot longer.

    The initial high dose (PMR,15-20mg, GCA,40-80mg) takes control of things, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works. It's a balancing act, you don't want to take too much Pred, but you need to ensure you are taking enough.

    The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not! As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have no return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.

    If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg. Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg

    Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am, so some people take their Pred around 2am so that by the time it is fully in their system (about hour or two) it's ready to fight the inflammation.

    Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.

    There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Rheumatology site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.

    Look up 'Spoons Theory on web, (Butyoudontlookill.com) it's not about PMR but it will give you an insight into how to adjust your lifestyle.

    You do have to do your bit as well though, just because you feel better, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as pre PMR, so when you exercise - do gentle - Pilates, yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscle recover, and that now takes longer.

    Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.

    Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help

    Take care.

  • Thank you DorsetLady, I have read your post twice and am still finding things I missed. Your knowledge is fantastic and thanks for all your good advice, especially about physical activity, yoga and Tai Chi sound good. Until recently I have been going to the gym to walk as fast as possible on the treadmill, then suffering later. Now that you have explained why this is not a good idea, I will be more gentle with myself. The book sounds interesting and will investigate soon. Giving in and asking for help will probably be the hardest thing, being somewhat determined, (or stubborn, depending on who you ask!), especially as I'm presenting with this at 56, though the symptoms were there un-investigated for at least 5 years. All your links will be visited at some time, though maybe not today. Also the advice about taking pred at 2am, this could explain why I wake up consistently between 4-5 am in pain, certainly one to consider.

    Once again, thanks Meggie

  • Good, you've got the "pacing" message already!😉

  • My immediate question: Did you drop from 20 to 12.5 quickly? And I see you did. What a crazy thing to tell you to do! How long had you been on 20mg?

    Your return of "symptoms" in under 24 hours was almost certainly "steroid withdrawal rheumatism" because of the big change in dose. Doing it in small steps avoids the risk of that. The recommendation from top experts for tapering (as opposed to reducing) pred dose is not more than 10% of the current dose at one time. That is not more that 2mg at 20 - he asked you to do 7.5mg!!!!!

    I had PMR for 5 years before it was given a label - by me, the rheumy didn't agree despite a miraculous response in 6 hours to 15mg pred. Luckily a GP was convinced. But in that entire time I had all the symptoms you have listed except the hearing loss - I can hear far too much!!! And I'm one of the 20% without raised blood markers. I don't think you really need a rheumy - not unless you struggle to reduce pred when you go about it in a more sensible manner.

    DL and the others have said the rest - don't be afraid to ask. Someone will have been there at some point.

  • Tahnkyou PMRPro, Yes the drop was large and I'd only be on 20mg for 6 weeks, though felt incredibly well. He did however tell me he has patients who are on a very low dose of 2mg and had been on that dose for several years. I feel he was trying to give me an incentive to reduce as quickly as possible, though it was not to be in my case.

    I am determined to not be rushed in reducing,especially as the change was so dramatic and has taken 7 days for me to feel well. Yes I feel a bit clueless right now, but I know I can ask a question that may not occur to me in the very generous 5 mins I get with the doc (not his fault).

    I can understand your battle to get someone to acknowledge your pain and other symptoms especially as you had no pain markers. I was certainly fobbed off by doctors who have now retired who didn't take my complaints of seriously, but gave opiate pain relief as a way of getting rid of me (have experienced severe reactions to some NSAID's).

    Thanks for your kind words Meggie

  • Yes - they'll hand out opiates with all THEIR risks but have a canary about us taking enough pred!

    The 6 weeks on 20mg was fine - it was the size of drop that wasn't. He also needs to learn that while he has patients on 2mg NOW you have to get there first. Though obviously he HAS got the message that it may take years!

  • What does 'have a canary' mean.. I've never heard of it before... Italian?!

  • Canaries were used in the mines to warn of toxic gas such as carbon monoxide. Miners used to take them down the pits, if the canary died everyone left the mine very quickly.

  • This made me curious and I found an alternative explanation that this particular expression is a jocular mispronunciation of "don't have a coronary".

  • I think that is probably what PMRPro meant! Nothing to do with yellow birds.

  • I was using it in the colloquial form of "have a fit". ReversoDictionary says "to react with disapproval, anxiety..."

    No- a very English expression...

  • Welcome MeggieK,

    Your story reads very much like my own and I am interested in your reporting that you gave up your statins thinking there was a connection with your pain. I did the same, and have still not returned totaking them despite a family history or high cholesterol. When I ask my GP he just shrugs it off, even though I have reported a tight feeling in my chest and some palpitations.

    He is obsessed with reducing my steroid dose in response to the reduced inflammatory markers, regardless of my reported symptoms of pain. And assures me that the ESR and CRP would be through the roof if GCA was present.

    This forum has a far greater depth of knowledge than most of our doctors, but it's not at all easy to get them to see things our way and mine is very suspicious of forums!!

  • "And assures me that the ESR and CRP would be through the roof if GCA was present."

    If he won't take it from a patient maybe he'll take it from some of the top PMR/GCA people in Italy/the Mayo?

    clinexprheumatol.org/articl...

    says

    "However, some studies have found that ESR and CRP are not able to differentiate patients with clinically active and inactive TA. Furthermore, histopathological studies have shown that over 40% of patients thought to be in clinical remission with normal acute phase reactants have active arteritis."

    It's a free-to-air article so you can print it off maybe and give him some bedtime reading...

  • Thank you PmrPro, I knew you would have some information to hand, saving me a long search.

  • Just for information Zebedee44, I have been diagnosed with cranial GCA and my CRP reading is -1 so his theory of blood readings going through the roof with GCA isn't always the case. I am also one of the 20% of folk who didn't have raised markers for either PMR or GCA .

    Jackie x

  • What worries me is that WE know this has been found in research by the experts - so why don't our rheumies? They are supposed to be specialists - I know they cover a lot, but these are fundamental aspects of presentation of a disease.

  • Thank you, I had high markers which led to the diagnosis, and bloods confirm these are now back in the normal range, but I am concerned about flash headaches and jaw and face pains. If the symptoms develop I shall be make my way to the hospital. Not seen a Rheumatologist yet, diagnosis of PMR only made in January.

  • Hi Meg,

    I'm new here too! I self diagnosed myself before the rheumie did. My journey began in Novemebr. I'm 52.

    I've just reduced to 17.5mg prednisone from 20mg. My fingers are crossed that I will be able to continue to reduce!

    I also have insomnia and terrible night sweats. My hands shake and I get pretty tired by mid day..probaqbly because I'm not sleeping well. My face is swollen but it doesn't look too bad since I had a long thin face. My blood pressure is now at an avg 133/85...high for the first time in my life..but that's due to the prednisone.

    I switched my diet to an anti inflammatory...cut out majority of sugar, processed foods and carbs....I lost all the weight I originally gained and then some. I actually haven't been this thin since college, yet my arms look a little like cottage cheese...also prob from the prednisone...so I've stared weight lifting again, albeit lower weights.

    Sorry to have to welcome you here...but this is a great site!

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