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PMR Symptoms??

Posted , 8 users are following.

linda82701_USA
linda82701_USA

Good morning, all, from the USA.  I am 70 and have been diagnosed since January, 2015.  Have been reducing from 20 mg and just recently reduced to 13 mg.  Am very sensitive to prednisone.  So just reduce by 1 mg at a time.  Even though I think my pain and stiffness are fairly well controlled by the prednisone, I walk VERY slowly with a cane, not for long distances, and still am very careful about everything I do.  Most anything seems to result in overuse of my muscles.  I rest or nap one to two times a day.  Recently I have had severe pain in my right groin and cannot raise my leg to get in the car.  Have improvised a way to get in the car without aggravating my groin so much.  Thought it would help the muscle or tendon to heal.  Also had to come up with a new way to get into bed. Has anyone else had this problem?  Is it PMR? It seems some new pain is always cropping up.  Thank you to all and have a great day!  Linda

1 like, 13 replies

13 Replies

  • Juno-Irl-Dub
    Juno-Irl-Dub linda82701_USA

    Posted

    Hi Linda, Sorry to hear you're havin a tough time at the minute. I can certainly remember some of the symptoms you're describing esp. the tiredness and difficulties lifting the old legs in and out of the car (and first checking no one was looking . .!). These difficulties all happened in the early months of treatment and eventually went away. So there's hope!  Regarding your Pred. reduction, I'm not an expert here but it seems you're reducing at 1mg. per month. Others here may tell you that maybe that's a bit fast a reduction now. . . .  Kind regards,  J
    • linda82701_USA
      linda82701_USA Juno-Irl-Dub

      Posted

      Hello, Juno,

      I am beginning to think I am reducing too quickly.  Never quite feel my symptoms have been controlled like they should be.  Thanks for your input.  Linda

  • constance.de
    constance.de linda82701_USA

    Posted

    Hi Linda.  Not being able to put your arms above your head, not being able to get in or out of bed/shower/car are all signs of PMR - we've all been there.  Unfortunately!  Continue taking your pred.  It's the only medicine that will help you.  None of us like taking it, but we persevere - we have to!  Walking will probably be difficult for some time, but just a short walk will keep you active and stop you  'freezing up'.  I started using a stick, then crutches, then a wheel chair.  Now I use a walker.  The thing with that is - you don't hit that 'brick' wall when out walking, you just sit down where you are and rest.

    PMR pain does seem to  'travel'  -  interesting  what?  Keeps us on our toes (if we can get up on our toes that is)!!!

    Keep resting and smiling.  All the best fr Constance. 💐

    PS.  It's 8 pm here in Germany.  Only a couple of hours before I go to bed!

     

    • linda82701_USA
      linda82701_USA constance.de

      Posted

      Hi, Constance, Thanks so much for reminding me of what PMR is.  It does crop up all over from time to time.  I never quit know if I should increase my dose of prednisone or hold steady.  So I hold steady.  I am inaging the smile on your face.  Thanks...Linda
  • VickieS
    VickieS linda82701_USA

    Posted

    Hi Linda, I also live in the US. Before I was diagnosed with PMR last summer, one of the main symptoms I had was severe bilateral groin pain. It burned so intensely that I couldn't even stand the touch of the elastic in my underwear. My thigh muscles also got very stiff and painful. It got so bad and I had no idea what was wrong with me, so I went to Urgent Care. They didn't know what was wrong with me either, but gave me a steroid injection and within hours the pain began to diminish. After 4 days it began to come back, and shortly thereafter my shoulder joints & arm muscles began to hurt too, leading to blood tests & my diagnosis. The groin pain went away once I got on prednisone, but a month ago when I tapered to 6 mg, I noticed it starting to come back. I've gone back up to 7mg & am feeling much better, but it's still there a bit.
    • linda82701_USA
      linda82701_USA VickieS

      Posted

      Hi, Vickie, I probably should have increased my preds when the groin pain reappeared a month ago but instead have lowered to 13 mg.  Have made an appt with a rheumatologist. So far I have only seen my GP.  I think he has done a good job diagnosing me and starting me on my PMR journey, but I am feeling the need of a specialist now. Thanks for sharing your story with me. Linda
  • Judygirl
    Judygirl linda82701_USA

    Posted

    Good morning Linda.  Have experienced most of your aches and pains,but there is hope, as you reduce very slowly - until your body tells you can go down another

    mg - you will experience fewer and fewer problems.  I am 87 and after nineteen

    months of reducing from 15 mgs to 3 I feel almost normal - a bit tired now and then

    but from old age probably.  Hang in there and you will do a good job, resting and

    avoiding stress is the ticket.  Good luck.

    • linda82701_USA
      linda82701_USA Judygirl

      Posted

      Hello, Judy,  On your PMR journey have you have to increase your dose of pred because of pain and stiffness?  I am not good at knowing if I should do this.  So I made an appt with a rheumatologist.  I think I should have been reducing far more slowly, but have had such a time with side effects have been reluctant to to up my dose.  Thanks, Judy, you give me hope!  Linda
  • lodgerUK_NE
    lodgerUK_NE linda82701_USA

    Posted

    Visit this link which will take you to the pinned section on this thread.

    Then visit the North East and ask for two reductions plans, devised by patients for patients - they are free of charge.

    You must also see you medics and tell them about the groin pain, PMR is a member of the vasculitis family and can and does affect other arteries, this is rare but it does happen.

    If that is clear then visit the American Academy of Bowen Practioners and have a go at Bowen Therapy, it has helped so many people with the aches and pains of PMR.  It is non invasive and the gentlest treatment you can have.  If after three sessions it is not working for you, they will tell you - so worth spending the money on the three one hour sessions on consecutive weeks.

    And Yes, I think you have reduced too fast - no more than 10% at a time is the golden rule and definately not every week. The aim with pred is to get down to the lowest dose to where you can manage.

    It won't go away tomorrow, it has a mind of its own and if you push it it will bite back and twice as hard.

    • linda82701_USA
      linda82701_USA lodgerUK_NE

      Posted

      Hi, Lodger, Thanks so much for reminding me of the resources of this website.  I, too, am beginning to think I have reduced too quickly.  Never have felt PMR is under control.  Maybe this is just part of dealing with the journey.  And continuing to learn about it.  Linda
  • pat38625
    pat38625 linda82701_USA

    Posted

    Hi Linda, yes it all sounds familiar.  Not being able to get in or out of car/bed/shower and that was without pred.  Last November was diagnosed with PMR and started with 20mg of Pred.  I am on 9mg now, just reduced Monday.  So far the dose I am on is working for me.  Your 13mg dose is not working for you.  You may need to go back to your dr.   It sounds like 13mg is not enough.  Like yourself I am very very careful in everything I need or have to do and am dead slow and stop.  Zero energy seems to be my worst problem.  Take care.  Regards Pat

     

    • linda82701_USA
      linda82701_USA pat38625

      Posted

      Hi, Pat,   I am still in this tenuous part of getting to know PMR.  I have made an appt with a rheumatologist.  My GP diagnosed me, but I am feeling the need of input from a specialist and another opinion.  Thank you for your response.  Linda
    • pat38625
      pat38625 linda82701_USA

      Posted

      Hi again Linda, I was diagnosed by a locum dr. in my practice, who rang me to the house.  I seen a Consultant Rheumy in March (somebody cancelled, there was a 6 month waiting list for URGENT appointments).  He is a specialist in his field.  I was in and out in approx. 8 mins and prescribed A.Acid or biophosofits (I am tired and cannot spell the word) anyway it's to prevent the bones from the alleged damaged that steroids do.  I enquired about a Dexa scan (it shows bone denisity) his answer was - further down the line.  A total waste of my time.  Oh and I am not taking them and told my new gp that.  I will take my chances.

      I have learned more from the people on this site, from their experience and also people who have a medical background, than I would ever learn from gp or consultant (they wouldn't have the time) and this one size fits all (it doesn't, we are all different).  I do hope you have a positive experience with medical professional, but remember they also differ and disagree among themselves.  They are not the be all and end all of PMR/GCA fountains of knowledge.  But I do wish you luck.  Please keep us all informed when you can.  Regards Pat

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