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Fellow PMR sufferer

Posted , 17 users are following.

margaret89358
margaret89358

I went to a party last night and by accident sitting outside to cool down because of sweating, one of the male guests said he was on Steroids ( Predisolone) funny  i am also on the same drug, I have PMR he said he did, but for a year he was told he had Lupus, when he was not getting better he paid to see a Rhmy  consultant who said you don’t have Lupus because over 70 you are too old. Hence he was properly diagnosed with PMR. He was put on 15mg and is now tapering down 1mg every 2 months, he is on 7mg and is feeling great except for the normal sweating tiredness etc. The interesting thing was he was told he would be cured in 2yrs I was told my adrenal glands would wake up but to be patient. Is it known that PMR does  only last two years. 

1 like, 41 replies

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  • elizabeth40672
    elizabeth40672 margaret89358

    Posted

    Hi Margaret

    For some it goes in 2yrs but I have heard that there are many on here that are over 7years and it is still going. I'm nearly 18mths in and would love to think that in 6mths I will be free of PMR. I don't hold hour too much hope though. Everyone is different. Elizabeth 

  • EileenH
    EileenH margaret89358

    Posted

    There are a lot of doctors who beliefve that - and will try to tell patients who still have it after 2 years that "it can't be PMR then". Unfortunately, it is the case for perhaps a quarter of patients and it is felt they remain at a higher risk of relapse at some later date. About half take up to between 4 and 6 years to get off pred and the rest of us take longer. About 5% of patients have what is called "refractory PMR" and that can go on for many years. I have had PMR symptoms for nearly 14 years now, five years without pred because it wasn't diagnosed, the last 8+ years with pred which has given me my life back.

    I'm not too sure about his rheumatologist - because there isn't really an age at which you are "too old to develop lupus", just it is less likely to happen as a new thing. Nor will he be "cured" - the autoimmune part of PMR does usually go into remission in the majority of patients but that isn't a cure. The possibility of it reviving at some later point remains and you can't say "I'm cured", just like many cancers go into remission but you cannot say "cured". 

    However - in fairness, men experience PMR very differently and often are able to get off pred much faster than we ladies. No-one knows why - one rheumatologist said to me once it was sometimes as if it were a different disease! There are almost certainly different forms, even amongst women, and that probably accounts for the differing durations. 

    And he is right that your adrenal glands probably WILL wake up with patience but for a small propertion of people they don't. I think I know 3 ladies on life-time pred because of poor or non-existent adrenal function. It may or may not be due to the pred - it might have happened anyway and there are several reasons for it.

    • margaret89358
      margaret89358 EileenH

      Posted

      Thank you Eileen, you always put everything in perspective, I am under no illusions, anymore I am dealing with it like everybody else good and bad days. I now carry extra Pred with me, I havent used any extra since i came back from holiday, but it is a safety net. I will always hate the side affects of Pred but as I am on 13mg I know from this forum as you get to a low dose some of these disappear. Thank you Eileen please always give us your good advise and help us make sense of what PMR is. 

      Happy holidays.

       

  • lilian05079
    lilian05079 margaret89358

    Posted

    Hi margaret89358

    For your adrenals to be stimulated and 'wake up' you have to taper off preds very slowly...once you are off preds it will take up to 2yrs for your adrenals and cortisol to function normally again, but that is not to say the PMR will have gone unless it goes into remission. Having said that everyone is different, i tapered off preds 10 months ago after being on them approx a year and my adrenals and cortisol were not working to their optimum level for about 6 months after, but slowly came back with the right diet and exercise and adrenal supplements they are now starting to function well..i can tell by the way i am feeling, so much different to when i first came off preds i feel normal again....hope this helps my very best wishes to you and your friend.....

    • margaret89358
      margaret89358 lilian05079

      Posted

      Thank you Lilian, I am so glad you are beging to feel normal again, that is what we all hope for.
    • bjmoen
      bjmoen lilian05079

      Posted

      What is the right diet and what are the adrenal supplements?
    • lilian05079
      lilian05079 bjmoen

      Posted

      Hi bjmoen

      I will have to send you a private message with the web address...i have to stress to you that you will have to speak with your doc or rheumatologist before taking the supplements..as you may not be able to take them while still on pred...i took them about 3 months after coming off preds. The diet is fine whilst still on preds....my very best wishes to you bjmoen...

    • bjmoen
      bjmoen lilian05079

      Posted

      Can you send a private message here or do I need to give you another option such as FB?
  • koen1
    koen1 margaret89358

    Posted

    I remember seeing a study that claims that there is a correlation between the duration of the disease from onset to remission and the duration of the onset of it. The slower onsets, in general, took longer to cure. I got ill very slowly for around a year, beginning with just stiffness in my shoulders and lower back in the morning and late at night. In the end, I could barely get out of bed, soaking wet all over my chest, shoulder and head from night sweat. I could only wash my hair by raising one arm with the other. Most of these symptoms would improve a lot after a couple of hours. I never stopped working, but was sooner tired and still much more sweaty than before. Also very bad for my golf game. Not my strength anyway, but getting awful, if you can barely take the ball out of the cup. Fatigue also got slowly worse over the year, but that has never gone away with pred. Than after 3 months of PMR, I got sensitive scalp, headache in the front of my head, light fever, weight loss and lots of night sweat, while I was on 20mg pred for the PMR, followed by 2 problems with my right eye, the last one being dark for about 5 min. They did a biopsy, but this was negative. However, the diagnosis was GCA as well as PMR and at 60mg my night sweats, headache and fever disappeared. I had two flare ups in the meantime. I am now on 25 mg, 13 months from my GCA diagnosis.
    • margaret89358
      margaret89358 koen1

      Posted

      Hi Koen thank you for sharing your journey what you have been through,  you have certainly been through it ,thank goodness you are managing and hopefully reducing Pred and not having anymore flares you could do with a break, take care and look after yourself. Let us know how you are getting on. 
    • EileenH
      EileenH koen1

      Posted

      That's very interesting koen - you don't have a reference do you? Not very hopeful for me then! Mine crept up over about 18 months or even more. 

    • Anhaga
      Anhaga EileenH

      Posted

      Have to say my heart sank as I read that also.  I've no idea when PMR really started for me because I can point to a very long progression, all the while believing it was only osteoarthritis.  There was never any sudden onset of symptoms such as people often describe here, rather a slow, but erratic, increase of pain and disability.

    • EileenH
      EileenH Anhaga

      Posted

      A couple of things started suddenly - or maybe it was just I hadn't done the things that made it obvious. It was just being unable to spring up onto the step in a step class that I noticed first, literally, the spring had gone out of my step!! In the autum I went to start getting fit for skiing and 2 minutes on the cross-trainer and I was in agony. And I never twigged!

    • Anhaga
      Anhaga EileenH

      Posted

      I know I've mentioned this before, but for the benefit of those on this thread, I kept thinking if I just did this or that new exercise I'd be better.  I was blaming myself for not keeping fit enough.  I tried a method called classical stretch, often promoted on US public tv, and was practically crippled afterwards.  Physiotherapy, which had always helped me, made things worse.  And I never twigged either!  I still remember the day at work when my arms were full of books and I had to call a co-worker over to take them from me as I literally could not manage to hold onto them any longer, nor move to set them down on a table.  That must have been close to a year before I was diagnosed.  

    • EileenH
      EileenH Anhaga

      Posted

      Exactly - I thought it was aging and loss of condition (as opposed to old age). Then the having to turn over in bed by numbers came along!! Nothing i've experienced with pred comes anywhere close to that ...

    • margaret89358
      margaret89358 Anhaga

      Posted

      I’m in agreement with you, I think mine started about 8mths before I was officially diagnosed in March this year. I started to get aches in my hips backs of my legs, I thought I was just overdoing the gym and classes. When I couldn’t blow dry my own hair because my arms felt heavy I thought I had, had a stroke or something. I just wish my GP at that time had referred me to a Rhmy, as I was imaging all sorts of things that was wrong

      with me. I hate PMR but I know there is a chance of being cured I hope. 

      I wish this for all on this forum. 

       

    • Anhaga
      Anhaga margaret89358

      Posted

      I know we'll never be truly "cured" but we are so lucky this is the disease we've got.  Our medication comes with its own little suite of side effects, but I'll take them anytime over the kind of disability Eileen touched on in her post.  Life after pred remains an attainable goal.

    • Elizamc
      Elizamc Anhaga

      Posted

      I think mine was a long time coming too, I was also blaming OA. 
    • Bethune
      Bethune Elizamc

      Posted

      Yes, mine took 6 mos to diagnose, I also thought I was  over-training athletically, until I had to pace all night because my buttocks hurt so much.  2 male docs treated me like a hypochondriac, finally another rheumy (female) diagnosed me in 10 mins and put me on Pred...  Instant relief!   While at times I've been down to 5mg... I've always had flares.  It's 8 years and I'm back to 24mg but trying to taper with superslow method .  True it's very manageable, and I function very well, but am developing osteoporosis and prediabetes despite being thin.  That part is discouraging.  

    • Rimmy
      Rimmy EileenH

      Posted

      Yes I worried when I read that too Eileen- It took maybe a year of 'creeping' symptoms for me to realise it was something really substantive and 'real'. I am sure we are not atypical though as we (women in particular) are so used to 'carrying on' despite what gets hurled at us that  we are often quite debilitated' before we ever want to admit it.  To be fair on the blokes though - who seem to be 'out of the woods' quicker than us - their version of coping is more often (dare I say) just 'denial' - really just another form of our resistance I guess.

      But I would also like to see any published peer reviewed research on this as it could also assist (possibly) with the rate at which we might choose to taper ?

       

    • Reeceregan
      Reeceregan EileenH

      Posted

      Oh yes! “ Turning over in bed by numbers”! You had to count too! I thought I was immobile for life at that point....
    • Reeceregan
      Reeceregan Anhaga

      Posted

      Almost my story exactly Anhaga. The more I tried the worse I got. Thought my bulging lower back discs had blown out again so back to my excercise physiologist to modify the excercises slightly as it was “a bit worse this time”. Then sore neck, shoulders, hips, glutes, legs....and then frozen shoulders, burning upper arm muscles, thigh muscles, full girdle pain and immobility. It was over 12 months of misdiagnosis (mainly by me because I hate being a “winger”) before finally going to the right dr and instant relief from 50mg pred (also have GCA with my serving of PMR). Now I’m tapering, currently on 13mg but oh, it’s not easy. 
    • nick67069
      nick67069 Anhaga

      Posted

      It was exactly the opposite for me.  I was in great shape, and then PMR hit me like a truck, and within several weeks I was practically immobilized, not being able to get out of bed. When I saw doctor, because they knew that I was physically active they told me that I just overdid it and need rest. I listen, but it was getting worse and finally I went to  my GP ( I saw 2 other doctors within that period), I told him that I know how I feel if I did too much exercise and this is not it and something is seriously wrong. This is when he took closer look, run blood test, suspected PMR and sent me to rheumatologist.  It all happened within 4-6 weeks and the last 2-3 weeks were rheumatologist running all tests, CT and MRI to eliminate any other cause of high inflammation markers.
    • Elizamc
      Elizamc Bethune

      Posted

      8years, oh my. You are staying positive? I’m focusing on the fact that although I was ‘in trouble’ it was nowhere near as bad as it could have been and not thinking about the road ahead too much. 

      I too was trying to find ways to train more, adjusting my exercise regime,  but pushing myself to keep going. 

    • EileenH
      EileenH Elizamc

      Posted

      I'm 13 years, Elizamac - but I don't feel disabled, I get fed up occasionally but not really anything worse than that. I won't compromise on dose and I've learned how to work round most of it. And there are so many worse things it could be. My husband has had treatment for cancer twice. Pred side effects are peanuts...

    • Elizamc
      Elizamc EileenH

      Posted

      Yes, as you say compared too many things PMR is peanuts. 
    • Anhaga
      Anhaga nick67069

      Posted

      Actually, Nick, I guess it wasn't clear in my post about the onset of PMR, I'd always kept myself in pretty good shape.  I'm not athletic but I walked a lot, jogged, and I'd done yoga since my 20's, probably in much better condition than most of my friends.  So it wasn't a question of trying to get fit from a place of being a couch potato.  I had been fit, just thought all I needed to do to get better was do more.

    • Silver49
      Silver49 EileenH

      Posted

      I know someone who had it for 15 years.....went in to remission for a short time and was then back on steroids but is only on 1mg now after a fairly short relapse. 
    • EileenH
      EileenH Anhaga

      Posted

      Same for me Anhaga - I'd been at the gym most days a week, nothing Olympic-style but steady. Nothing had changed there - just I could do less and less. I switched gyms to have a pool so I could do aquafit - that kept me going for the 5 years and let me also do Pilates and yoga. Nothing more active than that though.

    • nick67069
      nick67069 Anhaga

      Posted

      When I said , it was exact opposite for me, I was talking about sudden and fast onset of PMR, not about exercise. Sorry for confusion.
    • bjmoen
      bjmoen nick67069

      Posted

      Same thing happened to me.  As you say, hit me like a truck.  In a matter of 2 - 3 weeks I could hardly move. 
    • koen1
      koen1 EileenH

      Posted

      Hi Eileen, sorry for the late reaction to your question. I went back and looked through all the links that I saved from my wild browsing around in the beginning of the disease. I could not find the link, sorry about that, but I am almost certain that it was either a study done in the Netherlands, or in Belgium. European for sure. I believe that I found it as a reference in one of the better-known publications about the disease, but which? So many articles and each has so many references at the end.

      Again, to use your words, they only registered a correlation, not anything like causality. It does maybe make sense, that in a shorter onset, "it" whatever that is, may not get it's hooks so deeply into your system? 

      And sorry about your 18months onset, that may not bode well for you. Though it is great for everyone on this forum, that you stay on! You may be the world's foremost expert on this disease by now!

      We could perhaps interview all the people on this forum to confirm the theory?

    • EileenH
      EileenH koen1

      Posted

      I think it is probably one of the signs of the differing varieties of PMR. I'm absolutely convinced it is not a single disease - bit like MS comes in very distinct versions. At least it doesn't do serious damage while it is here. Or none I can identify!!!!!

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