PMR mild?

Sometimes I wonder if I have PMR? My GP says I have and my Rhumy says I have. Deep down I know I have but when I read and here other people's stories I do wonder? I am able to walk my dog for 40 mins a day, I also walk one hour at night three times a week without pain , however my arm hurts most days but mild. Some days it's hard to lift a kettle, I also get pains in my mussels around the top of my legs and bending and and getting back up is hard. When talking to my GP the other day, she told me I have mild PMR? My bloods are around 15,17,14 she told me that around 12 was normal. November last year was when the it all started although it took four months to diagnose. I'm now on 10mg of pred and hopefully reducing 1 per month but I've had a few flares. Anyway, can you get this mildly and if so does that mean it might burn out quicker? Would love to know. I miss the gym and find it hard to cycle now so I don't really do much exercise apart from walking and gardening. Thank you for all your advice so far. Donna. 🐝

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  • Yes Donna, you can get it mildly, so good luck with a steady and speedy recovery!

  • Mild however does NOT mean it will go away quickly. Sorry to have to disagree. Just like having it young doesn't mean it will go sooner.

  • Yes I wasn't saying it would be speedy, only hoping it is.

  • She can't tell you that an ESR of "around 12" is "normal" - everyone is slightly different and there is a range of acceptable readings which is "up to 20" and the only "normal" is YOUR "normal". It could be 20, it could be 4 (like mine).

    And when it comes to PMR - everyone is different there too! There are some people who even on pred are quite handicapped, others who regularly ride their cycles to almost competitive levels.

    However, since I too can walk all day at my own pace and do a lot of things when on the right dose of pred, I am going to disagree with Kate I'm afraid. I had PMR relatively "mildly" - I must have because I managed a reasonably normal life, still going to the gym for 5 years although I would try to avoid long walks as I had trochanteric bursitis too. But 12 years after it first appeared - I still have PMR and have had 2 severe flares in the meantime.

    I know a couple of others who, by those standards also had relatively "mild" PMR - and they have had PMR twice.

  • Oh ok thank you. I do try the gym and light weights are fine and good for movement but I don't have much strength or stamina for the arobic exercise anymore. Does mild mean good movement then as I hear some people have walking sticks and frames etc. I'm worried as I really don't want to get it bad. Can I avoid or do anything to make it better?

  • I haven't needed a walking stick or frame at any point. I was on crutches for 9 months, not because of PMR, but because of achilles tendonitis. I managed my PMR for 5 years with the gym, doing aqua aerobics (at my level to start with, never driven to keep up with anyone else, but able to do so after doing it 5 times a week for about a year), which then allowed me to manage adapted Pilates and Iyengha yoga. In both there were things I couldn't manage but I had superb instructors. I continued to ski for about 7 or 8 years, I've given up now but for reasons other than PMR. I managed movement classes for the first 5 years - mostly though they were classes aimed at over 55s (and attended by people up to about 85!) so were very low key and no-one looked at you for not keeping up! I couldn't manage "real" gym classes - being unable to do the step class was one of the first signs of PMR! I'd love to start again - but don't know how to find a group I could manage here and there are no gyms with a pool locally.

    Some years ago, ladies from the NE of England group attended a Nordic walking course organised by AgeUK or someone of the sort, can't remember who now, which was obviously aimed at old participants and gentler than usual. One was using a zimmer frame at the start - 6 months later she had dispensed with it. Others had needed a walking stick before which they needed far less later - the pair of walking poles you use helped their balance at first and improving their leg muscles did the rest. I do the stairs to the 2nd floor every day when we go out to the shops in the village and our daily walk - and when we have a few lazy days (because of disgusting weather like the last 2!) I really do notice a difference in my ability to walk downstairs without holding the handrail. Up isn't so bad.

    There are ladies on the forums who still regularly do Nordic walking and tai chi - and are very enthusiastic about how both help their balance and core strength. I think Pilates is brilliant. And if you have any concerns about your walking or balance - ask your GP to refer you for physiotherapy where they will advise you about suitable exercises to maintain particular muscle groups - which you can adapt to fit your ability with PMR.

    And you must remember - some of the people on the forums are in their late 70s and 80s. Would you be surprised at an 80-year-old using a walking stick? My MIL didn't have PMR - but at 80 was persuaded to use a walking stick and wear low heeled shoes when she complained she wobbled all over the pavement! Funny how not wearing 3in heels helped...

  • PMRpro, Did you find that exercising some every day was more beneficial to your pain then just trying to exercise a couple times a week? Because after I ride the exercise bike which I have not done for weeks now the pain seemed better the next day but then got much worse the following days. I would love to get some aerobic exercise but it seemed like it was just making things worse in the long run.

  • Not only doing a bit every day but also breaking up the amount done in a day into bite-sized chunks helps. When you do too much in one go - especially if you haven't done it for a while (and by that I mean a weeks, never mind weeks) - then your muscles simply have got out of training and it has more detrimental effect.

    If I skied every 2nd or 3rd day but only for a short time and on short runs, after a few weeks I could start to build up the amount and eventually could ski either for a bit every day or longer every other day. If I missed several days because of work or weather (I've always been a fair-weather skier ;-) ) I had to start at a lower level again. It is the same now with walking - at the weekend it chucked it down the entire time so we missed our usual walks. Monday was harder work than it had been on Friday!

    And remember - the problem is basically with the blood supply to (and oxygen and nutrients) and the waste removal from the muscles. Aerobic exercise increases the needs in both cases - so keeping it small and beautiful will help! Nothing to stop you doing 5 mins morning, 5 mins afternoon (or whatever works for you) and then building it up a minute at a time - or even more sessions with less time to start with.

  • The day I arrived at my GP's surgery was the day of very sudden onset of acute PMR symptoms, though I had felt a bit stiff for a month. After a quick blood test (CRP 250) his initial diagnosis was confirmed. Two days later, thanks to 20mg of pred, I was a new woman. The following week I joined a group in a four mile walk and felt no fatigue or pain; I did join a gym but got bored and gave up. On holiday with my family, in France, I joined in all their walks and swam a lot. During the last five years, I've had injections for a shoulder problem and benefited from Bowen therapy for piriformis syndrome. These may have something to do with PMR, but I am five years older - now just turned 76 - and have reluctantly accepted that some things are just age-related.

    I hope your PMR continues to be 'mild' - for the most part mine has been relatively mild and I needed a walking stick only for the piriformis syndrome and thanks to my Bowen therapist, I no longer need it.

  • Wow I sure wish I could do all that you guys can do. The more I exercise the more my pain increases in all my muscles. I was exercising every day for 30 years until this muscle pain started. I would give up anything except my wife and my life to be able to exercise again. I think I could lose my job my home whatever but just to be able to go for a hike or go for a walk. If I walk 1/10 of a mile it kills me. I can't sit for very long because the hip start hurting. So when you can't sir and you can't walk I end up basically not able to do anything. I'm still working but it's very difficult. I had to give up playing my musical instruments, hiking which I loved more than just about anything. I haven't started on the prednisone yet because I'm not convinced it's PMR and I'm scared of the prednisone to tell you the truth. I'm very sensitive to medications and I'm afraid I'll end up with diabetes or something worse. Each morning when I wake up I'm sorry that I did.

  • Hi jwb43 - I too am sensitive to medications but there are ways around thinking outside the square to help those of us with these sensitivities.

    My PMR was finally managed well (still is) with having hydrocortisone made up in an acid resistant capsule (at a cost to me) in order to leave my gut alone.

    Pred in NZ is not enteric coated. Despite my best efforts to find natural ways to protect my gut, I sustained gut erosions from pred when 1st diagnosed PMR early 2014.

    Life is certainly a challenge - I have found more positive ways to live & enjoy my days despite juggling the variety of conditions accompanying PMR.

    I have bad days but remind myself that this too will pass & tomorrow will dawn a brighter day.

    Don't be afraid - take the plunge & seek medical advice - if you still have your eye sight count your blessings - there are many on this forum who have lost their sight & continue in such positive ways to help us all on this journey.

    Turn those lemons into lemonade.

    Abundant blessings are sent your way in the meantime.

  • Megams,

    Thank you for your reply. I have seen many Dr and none of them seem to be able to agree on what I actually have. I tried smaller doses of prednisone and they helped a little. But my side effects were pretty extensive. I was very irritable and Moody I felt sick all the time like I was coming down with a cold my muscles got very weak and shaky. So I can't imagine what high doses would be like. I just don't know if it would be worse than dealing with the PMR pain. Plus some people have been on prednisone for many years or more I don't want to get stuck on that stuff for the rest of my life. I'm glad you are a positive thinker that's good but so far this condition is done nothing positive in my life

  • Hi jwb43 - it was a Rheumatologist who eventually diagnosed my PMR after struggling for at least 12 months prior with muscle pain in walking, turning over in bed plus a general feeling of relentless fatigue. Not sure if you have actually seen a Rheumatologist - he/she would make a definite diagnosis.

    I believe my mainstream GP is not 100% familiar with PMR. Hoping she is more enlightened since taking a research paper I printed off which PMRpro kindly supplied via this site recently.

    I have a Functional Medicine GP with whom I consult from time to time - he picked up on my symptoms straight away & recommended my present Rheumy.

    I still struggle with side effects of the steroids but as we all know if we don't at least try & do "our time" on the meds we are merely extending our illness longer than is possibly necessary plus putting ourselves at further serious risk of the possibility of GCA.

    Presently I have 5 rips in my right glutinous maximus + bursitis & have tennis elbow again. Have weekly trips to my fav physio but doing well with acupuncture plus doing my exercises. My shoulders have now become a bit tender so nursing them too. I am slowly reducing my meds & remain at about equivalent of just over 2mg Pred - I will be staying at this level for quite some time.

    I can not do the level of exercise I once did especially at present & all highly likely side effects of my meds. I continue to push on & keep my eyes on the ball knowing that one day I will win & at the same time look for happiness with the passing of each day even if its studying the beauty of spring in my garden - just simple pleasures.

    Really hope this helps you in some small way.

    Blessings

  • Hi jwb4. Are you on anti depressants or any other medication?

  • Dear jwb,

    So sorry you are suffering. Everyone, but everyone, is "scared of the prednisone," as you say. It's natural. But I'm not clear--has any doc told you that you have PMR? Have you visited any doctor to talk about your pain? What, if anything, have you been told?

    Well, we're all "sensitive to medications," and there's nothing to indicate that you'll "end up with diabetes or something worse," so were I you, I would try not to worry about such things as much as possible. I say "as much as possible" because it sounds like you are having quite a struggle with depression, which makes trying not to worry very, very hard.

    You need professional help if you haven't talked to any doctor. But in the meantime, do be aware that all of us on this forum are on your side and sending good wishes--

    Barbara Y.

  • Barbara thank you for your reply. I've seen dozens of doctors including rheumatologists and they're undecided and mixed regarding my diagnosis. I've also been seeing a therapist for years it really seems to help that much I try to take the medications for your depression they just called me more side effects. My wife says I'm one in 1 million when it comes to side effects seems like I just am so sensitive to medications. Anyway the biggest frustrating part is the lack of activity. I think I could deal with the pain if I was able to go out and go for a walk or ride my bike or get some exercise and use my body like God meant us to do. But I feel like a trapped animal in a cage. Anyway I'm sure there's a lot of people that are suffering way more than me what choice do we have a to hang in there.

  • I don't consider that my PMR is mild, however I have no pain, no difficulties with my arms or with walking, I haven't had since starting Prednisolone. It certainly isn't mild, the excruciating pain and immobility for months pre Prednisolone is burned into my mind! There was nothing mild about that, and I know that it is still there lurking under the steroids.... Prednisolone makes my PMR seem mild. I do have difficulties but most of my problems now come from the side effects and the sluggishness of my Adrenal system. I am very aware that if I try to reduce too fast, the pain etc will come back but also that even if I get it 'right' the lurking tiger could come out and bite me just cos it can. PMRpro has recently shown us this.

    The only other thing I'd say is that we all have own own variation of this condition, for some the Prednisolone doesn't seem to clear all of the inflammation and so their journey is more problematic than for example, mine.

    I think doctors often say what they think we want to hear or perhaps your's doesn't understand PMR. What about the 20% or so whose blood markers are never raised, certainly doesn't mean they have mild PMR.

    As a separate issue, if you've been having flares, maybe you need to reduce more slowly. Especially when you reach 10mg or less, I couldn't reduce by a whole mg. Have a look at the Dead Slow Nearly Stop method. You have done so well getting to this stage in a year, but now it's 'slowly, slowly catchee monkey'......

    Good Luck, I hope it goes smoothly for you.

  • Sheilamac - that pretty much sums my thoughts/experience exactly! How people can put up with the symptoms for several months prior to diagnosis, I really do not know! In my case the onset seemed very rapid but the 1hr of sleep a night, inability to move the duvet, let alone get out of bed, nor lift the arms to shower, sit in a car for longer than 15mins....... all etched into my memory along with excruciating pain - urrgh, I couldn't say PMR was mild. Thank God for Pred !

  • Zellamze, A trial conducted by Dasgupta in 1998, showed a median ESR of 15.8 for 60 PMR patients treated with steroids for 12 weeks.

    In a 1998, Uddhammar trial, 15 PMR patients showed a median ESR of 19 (range 10-24) after 12 weeks of treatment. Thirteen percent of participants in this trial also had pain and stiffness at the 12 week interval.

    In an earlier Dasgupta trial, 13% of PMR patients treated for 12 weeks had residual pain and stiffness

    I hope this helps.

  • Some unsolicited advice: I would not reduce my PMR dosage EVER to less than 1 mg. per month, and then at some later point, I would advise starting on the "slow, slow, nearly stopped" plan. It works! I would stop worrying too much about tests results and pay careful attention to how my body feels instead. I am PMR-free these days and very grateful to be such. . . . All good wishes to everyone who posts!

    Barbara Y.

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