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Pmr and reduction of symptoms)

Posted , 21 users are following.

Twopies
Twopies

this is probably the dumbest post ever, but I obsess over things, so here goes:  some people with pmr are never pain free.  I am one of those people,  I got pmr in August, 2016, started pred late September 2016.  I am never pain free.  And I have lots of pred side effects, the common ones:  increased blood pressure, blood sugar, weight gain, etc.  on a good day I can walk 5000 steps but only in short spurts.

here is my question (my husband says I'm nuts):  if I am never pain free, and never have been, how will I know when I am pmr free as I reduce on the pred?  Right now I'm using dsns to get to 6 mg,  I'm not any better than I was since I started pred.  I've always had groin stiffness and leg muscle pain especially in the mornings.  

So...let's say I manage to work my way down to 1 mg. pred...and I still have the same level of stiffness and soreness that I've had all along....I'm assuming I can't get off the pred because the pmr is still active, and I sure don't want a flare.

Please don't tell me to increase the pred right now...I've done that a couple times, all the way back up to 10 mg...no difference whatsoever, but remember, I'm not one of the ones who is pain free...I've never been pain free.  Before I started on the initial dose of pred (20 mg) I was bedridden with pmr pain--had bad case.

i guess my question is:  when and if the pmr burns itself out, shouldn't I expect to be eventually pain free before I can get off the pred altogether?  (Yes, I understand that some people never do--but I'm just sitting here obsessing over life in general so thought I would turn to you all for thoughts).  Thank you!

 

2 likes, 32 replies

32 Replies

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  • Frit
    Frit Twopies

    Posted

    So sorry you are having a difficult time and that you are obsessing about life. I started on 15mg in May of this year - my GP advised that I should feel better within 3/4 days and I was - felt like a miracle drug. She did advise to get in touch if I did not feel better within the three days . Though I cannot be sure I imagine she would have said to increase the dose if my pain had not disappeared. I cannot help but think from what I have read on this great forum that your initial dose was no high enough? But there are much more experienced people to advise. I certainly was not in as much pain as yourself at the beginning. Good luck and hope you get some answers soon so you can get pain free.

     

    • Twopies
      Twopies Frit

      Posted

      My pmr pain in the beginning was gone—the shoulder, upper arms, legs, etc...both my rheumy and gp were very pleased.  Within 3 days I was up and out of bed. What I’m left with now is stiffness and soreness in my groin and thighs especially in the morning until the pred dose kicks in. But standing is hard no matter what time of day. 

      What I’m trying to figure out is if I’m never pain free, that must mean the pmr is still active. So what happens when I reduce even further? Surely I can’t get off the pred completely as long as I have the stiffness? This is how I’m spending my holidays...obsessing over the future. Thks for your thoughtful post....

    • audrey80537
      audrey80537 Twopies

      Posted

      I have had PMR for almost three years. I still have times when I feel pain or fatigue but nowhere near what I felt in the beginning.  I had a very difficult time reducing with multiple flares and Now with the help of alternative means I have gotten to 5 mg. 

      I also have OA so sometimes it’s difficult to know exactly the cause of pain. 

      There are alternatives available for some of us to help with the pain one of which is cannibis or medical marijuana.  Aside from reducing pain it may also help with weight reduction and blood pressure.  Sad part is it’s not available to everyone.

      Wishing you the best and happy holidays 

    • Frit
      Frit Twopies

      Posted

      Again others can advise better than me but are you splitting your dose or taking it at say 4.00 in the morning as Eileen has suggested as it takes about 2 hours for the Pred to kick in. A hard lesson but it helped me to get through cancer is not to worry about something you cannot control and be grateful for each day. I trust you have confidence in your Rheumy and GP so please try to just do what you can and let this pernicious condition takes its course. Take care and hope you find a way to stop the worrying.

       

    • Twopies
      Twopies Frit

      Posted

      I gotta try the split dose again...my doc suggested it, I tried it but think I need a different ratio this time. Thks for the suggestion! Will let you know how it goes....
  • constance.de
    constance.de Twopies

    Posted

    The one thing that won’t help is ‘obsessing’ about being in pain.  You are at the beginning of what could be a very long journey - many go into recession within 2 years, with others it takes 4-6 years and a few will be on it even longer!!  It’s very difficult to cope with I know - I have had PMR for 5 years now and I have never been completely pain free.  Some days are better than others, but as I have polyarthritis too they are rare.  We HAVE TO find a way of coping ourselves - doctors can’t always help.  Perhaps you can ask your doctor for some tablets which will help with depression.

    I wish you luck and hope you have the strength to deal with this pesky illness.  You are not alone.

    Constance

  • Reeceregan
    Reeceregan Twopies

    Posted

    Oh Twopies, I sure do understand exactly what you’re saying! You have just described both my body and mind. I obsess over this question myself, it has taken over my life worrying that I’ll never be pain free and this is how I’ll be forever. I started on 50mg beginning of June this year (GCA and PMR) managed to get to 20 without a problem...they were big drops though. From then on it’s been hard work, and only on 1 mg drops at a time, I’m now doing DSNS between 11 and 10. Like you, I increased a few times in between...no change. Still pain. A few complications have just been thrown in to the mix to make it harder to manage (torn ligaments in foot, diagnosed with severe osteoporosis, tooth extraction , family member drama,  all within a month, blah blah blah).... trying to keep my mojo but boy it’s a struggle when you don’t seem to be getting anywhere. And the pain varies daily. 
    • Twopies
      Twopies Reeceregan

      Posted

      Yes, same here...we just can’t help but wonder, can we?  I’m thinking if I feel this way at 6 mg, and I feel this same way at 1 mg, then doesn’t that mean the pmr is active still?  I guess what I am asking is: will there be some point where I will be pain free from pmr? (Unless, I know, I’m one of the ones who never recover).  I’m just asking about the process, if that makes sense.

      Some days are better than others, admittedly.  Increases in pred haven’t made an appreciable difference...I was never 100% pain free at the starting dose and the side effects were enormous.  

      I do what I can to make life livable.  As do you. Thanks for sharing! 

    • Reeceregan
      Reeceregan Twopies

      Posted

      Exactly. As you say, if we feel the same at 6, will we feel the same at 1: so is this the “feel”... is this how it’s going to be. One dr in the beginning told me I’d  Be on pred for life because of the severity of the conditions in the beginning, now they are hell bent in getting me off it. Crystal ball might help. But we still, get up, dress up and show up, and rest up when we have to. THanks for listening and please keep posting here with your progress. Good luck  💪

    • Twopies
      Twopies Reeceregan

      Posted

      I just ran into the only other person I’ve ever met with pmr—she’s in year 13 or 14 and finally down to 1/2 mg pred every other day after years of ups and downs with dosages. And I mean way ups!  And she has the exact same question—she still has morning stiffness and soreness.  She isn’t bent on getting off the pred altogether, can stay on current dose forever, she’s just wondering like us whether it’s realistic that she will ever be pain (i.e.stiffness and soreness) free. Hugs to you.
    • EileenH
      EileenH Twopies

      Posted

      Oh well - hope for me even now then!! 
    • Reeceregan
      Reeceregan Twopies

      Posted

      Wow. But you know what, I have met a LOT of people with PMR, in fact my neighbour across the road, a 70 y.o male, had it for 2years, now has Parkinson’s, another friend had it ( before I met her through my husbands bike club) and just recently at a caravan park for a short weekend break, the lady beside us also has had it for the last 5 years but no one seems to have had it  as bad as me. Mind you I don’t go around telling people, they see how I walk (like a duck most of the time) or with a walking stick if hubby isn’t holding me up, and ask what’s wrong. I shudder when I have to explain because I think no one will know what I’m talking about or really care, they’re just being polite, so I say I’ve just got an autoimmune illness but then they want to know more. Last week when I had the tooth out dr upped my pred for 2days prior from 11 to 25...which I have thought may be my “sweet dose” ...nope, no different. Then back down to 11...same. So I guess   we just have to motor on regardless and hope in time it burns itself out. Nice talking to you, keep me posted. 
    • EileenH
      EileenH Reeceregan

      Posted

      Apparently PMR has been seen to present as "steroid reversible parkinson symptoms"...

      Yes - it's funny isn't it when you get talking to someone and suddenly you are talking a common language lol

    • Reeceregan
      Reeceregan EileenH

      Posted

      That’s interesting Eileen..about steroid reversible Parkinson symptoms. As for the common language, it’s really weird because everyone’s heard of all the different arthritis, Parkinson’s and Lupus but I wrongly assume I’m the only one in the world who has this one ( she jokes) so I fob it off a bit when they ask...only to find every other person either has, or knows someone who has it and the language sure does change. And aren’t they happy when I mention this forum! Their eyes light up as if they’ve just heard their long lost friend has just been found ...bit how I felt when I joined. 🙌🏻

  • EileenH
    EileenH Twopies

    Posted

    Has your rheumy done any other investigations? Having PMR doesn't excuse you from other disorders.

    Have you been looked at for trochanteric bursitis? That would fit with the pain and stiffness you describe. That may respond to oral pred - but not always. It responds far better to local injections - and NOT necessarily intraarticular ones (into the joint) so it is easy enough to have done quickly. I also have myofascial pain syndrome - which parallels my PMR. if the MPS is bad, I need more pred to manage the PMR part and for some people they wouldn't know which was which - I have had a LOT of practice!

    But the bottom line is that what you got rid of at the start with the pred is likely to be PMR. What was left is something else. Any increase on that as you reduce the pred is probably PMR-related. 

    • Twopies
      Twopies EileenH

      Posted

      Well, if what I have is something else, then it would have set in at exactly the same time as the pmr? 

      My docs seem to think that my groin and upper thigh stiffness is pmr...remember, I was never pain free on beginning dose pred. Yes, I was completely pain free in my shoulders, arms and legs. By current pain I mean this stiffness, especially in mornings or after over exerting myself.  I am very limber—I can move my shoulder and hips in a complete circle, no problem. Thanks for your reply as always...I have had myofacial pain in my neck for 18 years, lotsa treatments, lotsa docs.

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