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Polymyalgia Rheumatica

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leef
leef

I was diagnosed with pmr in July 2017.  My pain was in so many muscles in the back of my calves, thighs, back, shoulders and neck so much that my husband had to help me turn over in bed and assist me to get out of be - excruciating pain.  I had been prescribe Prednisolone 15mg initially and dropped by 5 mg in the next 8 weeks with enormous pain returning.  I returned to 15 mg and pain was acceptable and almost gone by mid afternoon.  I am now on 6 mg and can cope with the morning pain, but find that the pain has moved to front muscles now.  Thigh, groin, shoulder blades, shoulder front, and neck and upper chest.  I have trouble getting in and out of a SUV and need a strap to help lift my left leg into the vehicle (Australia so drive on the left hand side of roadway).  Pain is worse when I just sit, so I had to give up my job as a judge's assistant - can't sit for hours in court without excruciating pain on rising. 

I thought that three things may have triggered the onset of PMR.. Sensodene toothpaste, electronic bed or stress.  Anyone with any other triggers they may think contributed to the onset of PMR.

 

0 likes, 37 replies

37 Replies

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  • kathy61958
    kathy61958 leef

    Posted

    Hi, Leef 

     I too was diagnosed in July of 2017. Your story mirrors mine verbatim. Every time I taper down, the symptoms return with a vengeance. I’m still at 20mgs with no chance of tapering anytime soon.

     There has never been a known cause for PMR and there is no cure. I’m a habitual researcher and everything I’ve researched on PMR and GCA (Which I also have) comes full circle to “no known cause”.  Five to seven years tends to be the time span, so we’ll be swallowing prednisone for a very long time.😔

    • EileenH
      EileenH kathy61958

      Posted

      At what point does the pain return? How do you reduce?
  • andre68439
    andre68439 leef

    Posted

    leef, i think the triggers are varied but the underlying propensity for PMR seems to be genetics/DNA. People from Northern Europe or carrying their genes are at the top of the list. I am of the opinion that anything that hammers your immune system can trigger it. So it could be many of the triggers that Eileen posted including one other that weakens your immune system...father time. My trigger was training in 90 degree (F) heat in Florida while 61 preparing for a 100 mile charity ride. Two weeks after the ride the general soreness became pure agony. Once clear of PMR (32 months) I completed three more Century rides over four years without an issue. Then after being sedentary for about three years I got a relapse with different symptoms.  The only trigger I can think of was a head infection a month earlier following an airplane ride that forced my congestion from a cold into my ear canals and even infected my eyes. Good Luck and slow down the tapering of the prednisone. 
    • Danrower
      Danrower andre68439

      Posted

      I couldn't agree with you more. I've had 2 bouts, as I have mentioned, precipitated by trauma, physical or psychological.  We're born on a lead sled,  the top of an icy hill, and were destined for the path, largely by genetics. Notwithstanding poor lifestyle choices,  of course. Florida resident here.

      Good luck to all

    • BettyE
      BettyE andre68439

      Posted

      My feeling has always been that it my immune system that is hammering ME!

      I have had two sessions of PMR ( no GCA )  five years apart with no stress triggers that I can identify.

       It's getting on for five years since I got to zero Pred.  but I was taking it for eight years all told with all the well known ups and downs but in all that time I only once had a cold and one UTI so consider myself fortunate so obviously my immune system was still functioning pretty well even while being subdued by the steroids.

      Apart from all the usual childhood illnesses  I have had an illness free life for which I give thanks but  is that because my immune system works overtime and was PMR the price I payed when It turned on me?

      I was an Infants school teacher and we all know what  that means; you're in touch with bugs on a daily basis. So, while I was working, my immune system was challenged  continually which kept it on its toes.  I remember my vet saying that my dogs that went to shows probably didn't need yearly boosters like the ones that stayed at home as pets or in retirement because they, too, were meeting bugs regularly and thereby keeping their immune systems up to scratch.

      There is a Nobel prize awaiting anyone who can work out how we can have sufficient immunity to keep us clear of infection but not so much that it turns to bite us.

    • Tinapoly1
      Tinapoly1 andre68439

      Posted

      I took after my Irish father who had immune problems & rheumatoid arthritis . I was told while visiting Ireland that they have more rheumatoid arthritis than any other country in the world along with skin cancer which I have had over 100 ,starting at age 20 but I blame that on living in Florida and my dark skinned Mom taking us too the beach since we were babies & then we went fishing in the ocean for most of the day when it was my turn since I have 6 siblings who hardly have any immune problems or skin cancer but they came out a bit darker than my white ,freckled skin so I think me getting more of my father's Irish everything along with many autoimmune problems is not a coincidence . WHERE ARE YOU IN FLORIDA ,ANDRE ? I lived most of my life in Hollywood ,Fl. ,just north of Miami, & south of Ft. Laud. Also Coral Springs and Boynton Beach.

       

    • Michdonn
      Michdonn Tinapoly1

      Posted

      Tinapoly, I am Irish American also with autoimmune problems, skin problems once a year to the dermatologist, the freeze. Both my brother and I have had some removed surgically. We are both diabetics and pass that on to our children. I have told him to be aware of PMR, but he is sure it will not effect him, he felt the same way about diabetes. I believe a lot of our issues have a generic component. But I am staying active, positive with a smile on my face. ☺️
    • andre68439
      andre68439 Tinapoly1

      Posted

      Tinapoly1, I was born in Amsterdam, lived in NJ for 22 years, then Plantation FL  (near the Sawgrass Mills Mall which you will know) for 26 years and now in St Johns, Florida 3 1/2 years halfway between Jacksonville and St Augustine.
    • andre68439
      andre68439 Danrower

      Posted

      Danrower, my first cousin in Holland on my mother's side is suffering from PMR as I write this. Hit her after a stressful move. I traced my parent's lineage back to mid 1800's with all Dutch families from Amsterdam and northern farmlands. I always thought what a great sturdy gene pool since my mother made it to 92, her sister 97 and her grandfather to 99. But as you said we are also on a lead sled on an icy hill. 

    • Tinapoly1
      Tinapoly1 andre68439

      Posted

      Yes Andre,I know Plantation well. I have heard of St. Johns and it must be nice if you stayed there for 22 years now. We moved to Fl. when I was 6 months old to Lake City and worked at the VA hospital in Jacksonville but since my ,who was a general surgeon ,wanted to have a private practice he then moved to Hollywood which was nothing in the 1950's. My friend moved to St. Augustine and is very happy there. I love that city too.

    • Tinapoly1
      Tinapoly1 Michdonn

      Posted

      I agree Michdonn. So much is genetics and there are triggers in our lifetime that bring out these horrible illnesses. Hang in there and as long as I don't look in the mirror I can keep a smile on my face, especially when I see my 2 granddaughter's who bring me so much joy.

       

  • reggie92967
    reggie92967 leef

    Posted

    Leef, Sorry for the incapacitating pain you have. I was diagnosed 5-years ago next week. I was unable to get out of bed, not until 2:00 or later in the afternoon. That caused me such depression, feeling worthless. I have a high tolerance to pain, but it was overall & the stiffness was so bad. But, the worst for me was horrible fatigue, no energy to accomplish anything. I just would lay in bed & to just move a finger was too much. I was given a trial of 10mg. Pred., & in a week felt like a superhuman, was going, going non-stop, trying to make up for lost time. That all wore off, in a few months, so then they played the way up & way down dosage game. Side-effects really troublesome, 40-pounds weight gain, blown up like a balloon, thin crepe skin on arms, tearing open all the time. Won't wear short sleeves in public. I now am on 9mg. but since dropped from 10mg. , symptoms returning. I still deal with overall, like a throbbing pain, & the fatigue is bad, see Dr. today. So upset with my mind telling me to do all the things I used to do without even thinking, now everything, the least little thing is like climbing a mountain. Reggie A.

  • leef
    leef

    Posted

    Thanks so much to all who replied. It appears that I am trying reduce prednisone too quickly. It’s me, not my doctor. I don’t want to be on this drug. I’ve put on 8 kg, my face is puffy and my hair is thinning. Not a good look at my age. 64. I’ll stop reducing the prednisone as you advise and hope that things get better. If they don’t I’ll increase again. Thanks again. Lee
    • Tinapoly1
      Tinapoly1 leef

      Posted

      We all hate being on the prednisone and have the side effects like moon face, camel back, giant body,giant feet & ankles, & so on. I have gained 35 lbs. and cry when I look in the mirror since I was thin my entire life and just turned 64. What I would give to go off this drug but know that I have to taper off for a very long time . My endocrinologist told me that after being on prednisone for 10 months now & it giving me Cushing's Syndrome with the symptoms above, that the drug shrinks the adrenal glands and takes about a year for the adrenal glands to get back up to normal size and to start functioning again & that is after tapering off and going off the drug but from what I have read on this site it will take way more than a year.

       

    • EileenH
      EileenH Tinapoly1

      Posted

      He's overstating it - the majority of patients are able to taper off pred with no adrenal problems when they go slowly. It is the PMR that is the first and biggest limitation as to how long you are on pred. You need pred as long as the underlying autoimmune disorder is active. Once it burns out then getting off pred is mostly not too difficult - but PMR lasts an average of just under 6 years.

      I lost the 35lbs I gained with pred while I was still taking above 10mg of pred/day by cutting carbs drastically. I was in hospital 6 years ago and the first thing on the diagnosis sheet was "Cushing's syndrome" - all the doctors agree now you wouldn't know I was on pred. It can be done - and there are a lot of people who can say the same.

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