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Newly Diagnosed PMR...Dr appt today

Posted , 11 users are following.

manikki
manikki

I started 20mg of Pred.3 days ago, and am mostly pain free so far.Had my follow up Dr appt today. He will keep me at 20mg for 4 weeks, and then have me to down to 15mg and see how I do. He said the first "jump" down can be that big, but subsequent drops will be by 1 or 2 mg. Is this what most Dr's do? He also said I can start my water aeorbics back classes back up again and it was really up to me whether to go half time for a couple of times, or get right back into it. I am SO happy.......ILOVE that class. There are only about 10 older ladies like me in it, and the instructor is so nice. Feeling  hopeful today !!! Went and got my hair cut after my Dr's appt !!!!!!!!!!!! smile

1 like, 22 replies

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  • ellen40911
    ellen40911 manikki

    Posted

    So thrilled for you. I too am on 20 mg per day and am completely pain free. I  am 55 years and very active but 2 weeks ago was so sick I could barely move and had to roll out of bed of morning. I haven't felt this good in at least a year. I see my doc in 2 weeks and will remain at 20 mgs until then. I exercise daily (hot yoga) and feel fantastic. It is ashame that PMR is not easily diagnosed.
    • dan38655
      dan38655 ellen40911

      Posted

      Ellen, did it take a year to get a proper diagnosis and prescription?

      I waited maybe five weeks before a third physician finally gave me a test-dosage of 20mg, which seemed like an etrnity, but the 20mg kicked in good within 3-4 days.

      I had also been unable to sleep much or to get out of bed without a lot of real agony.

      18 months later I am just now dropping from 6 to 5mg, after my tapering needed a 6-month break. I am now feeling good with quite-limited symptoms, and I think my course has been fairly typical of PMR. Symptoms have wandered about from neck to feet.

      Good to hear Manikki is responding to treatment :-)

    • ellen40911
      ellen40911 dan38655

      Posted

      I have had significant symptoms since March of 2015 but I initially thought the stiffness and pain must be "aging". My first appointment was In April 2015. My diagnosis was made 16 days ago. I was seen by my primary care physician twice, underwent an MRI of neck and back, 10 weeks of physical therapy twice a week, was seen by 2 neurologists, trigger point injections in the upper trapezius, and was prescribed home cervical traction and 2 pain meds and a prescription nsaid prior to prednisone. I ultimately was diagnosed by a rheumatologist who is a colleague of my husband. I live in the US.
    • EileenH
      EileenH ellen40911

      Posted

      That is a fairish catalogue of people who SHOULD have recognised PMR - in some countries neurologists also deal with PMR and if a physical therapist can't recognise it they need to go back to school. And the physical therapy probably did more harm than good.

      I suppose they all made a decent living from it though.

      I do despair sometimes.

    • LayneTX
      LayneTX ellen40911

      Posted

      Ellen,

      would you you tell me about your upper trapezius pain , injections, how they found it, ... Was it cortisone injections? Or anesthesia injections? Did it help or just the prednisone helped pain go away?

      my physical therapist made me do push-ups to failure and since then I've had pain daily between shoulder blades and even tender spot on right side of spine.  Not sure if it's PMR related, I still have some PMR pains in typical areas. So, sorry your diagnosis took so long. Mine was over Christmas so I didn't get in for 6 weeks. And after researching on Internet I said I had PMR symptoms; after high SED rate they agreed.

      Thanks, Layne

    • ellen40911
      ellen40911 LayneTX

      Posted

      Lidocaine was injected into upper trapezius. It had no effect. It is a very strange procedure because it causes momentary involuntary muscle twitching which I found odd and uncomfortable. Predisone  has completely erased my pain in the neck, upper back, shoulders and hips. I feel great now. I hope you find some relief soon too.
    • EileenH
      EileenH LayneTX

      Posted

      I trust you sacked that PT? How ignorant can you get!

      What you are describing sounds like myofascial pain syndrome - the same symptoms I had on top of PMR, I had cortisone shots into the trigger spots but also manual mobilisation - physiotherapist used her fingers to find tha hard knots and work them out. Bowen helps to of course.

    • LayneTX
      LayneTX EileenH

      Posted

      Thanks Eileen! Yes, quit the PTs!! At first I liked that he helped me learn to squat down and engage my gluteus muscles and posture, but the last straw was the 2nd or maybe 3rd time he asked why I was on Prednisone!!! Idiot! 

      I had previously questioned him if he knew I had PMR.  I'm tempted to send them a book on PMR!

      I'll ask my Bowen gal to work on that area. She's done good with my lower back and shoulders. Tried working my hip flexors... But I think they've turned to Tendonitis. 

      Live been able to walk more lately due to less lower back pain! Yea! 

    • ellen40911
      ellen40911 EileenH

      Posted

      I know what a waste of resources. I have emailed my PT in hopes she will have a clue next time she sees someone with my cluster of symptoms. Next to educate my primary care doc and spine center doc....crazy!
    • EileenH
      EileenH LayneTX

      Posted

      Where's the hip pain? On the outside of your thigh or on the inside into the groin, low down on the flexor? That is the sort of area where you might feel pain from trochanteric bursitis which is often found in PMR. 
    • LayneTX
      LayneTX EileenH

      Posted

      Well... Yes I also do have reoccurring trochanteric bursitis in right hip (side) from before PMR. Shot helped that though it's still there sometimes, but not bad.

      The tendon is we believe of my Rector Femoris, it hurts to lift when getting dressed or in my car. I can only lift it 8-10" in mornings...still.  And they are both tender to touch. Also was my pectineus but it feels better now days.

      My sit bone areas (Ischial) still hurt when I ride in a car. I do place a tennis ball or pillow under me to remove pressure from those spots. 

      Ha! Literally a pain in my rear! wink 

       

  • ellen40911
    ellen40911 manikki

    Posted

    I have had significant symptoms since March of 2015 but I initially thought the stiffness and pain must be "aging". My first appointment was In April 2015. My diagnosis was made 16 days ago. I was seen by my primary care physician twice, underwent an MRI of neck and back, 10 weeks of physical therapy twice a week, was seen by 2 neurologists, trigger point injections in the upper trapezius, and was prescribed home cervical traction and 2 pain meds and a prescription nsaid prior to prednisone. I ultimately was diagnosed by a rheumatologist who is a colleague of my husband. I live in the US.
  • karen48559
    karen48559 manikki

    Posted

    Hello again Manikki So pleased that you are feeling much better. 
  • karen48559
    karen48559 manikki

    Posted

    My doctor has also said at higher doses it is ok to reduce by a larger amount, so I have just dropped from 30 to 25 mgs and am holding it there for 1 month. However, in a month I'm going to insist on reducing by not more than 10% of the total dose as I hear from so many people that coming down too quickly can allow flare ups to occur and tehn you have to go back up again. Very slow reductions are much better for ultimate success.  
  • molly1957
    molly1957 manikki

    Posted

    I started on 15mg of pred and within a day or two was pain and stiffness free, I was on that for 3 weeks and then put on 10mg that was 4 weeks ago he has given me 60 days on this dose, I have no stiffness but I have some tenderness in neck and shoulders and fingers of right hand from time to time , my rheumatologist told me to carry on as normal but I've found if I do too much I get tired and sore so I am trying very hard to listen to my body , don't be surprised if your body reacts to the drop in pred as mine has , I've found this forum a great help and Eileen a wealth of knowledge and information on pmr 

    good luck to you Molly

    • karen48559
      karen48559 molly1957

      Posted

      Yep same advice given here Molly. "Oh just get back to your normal lifestyle."  Well it was fine at first whilst on the highest dose I was given, but now the reduction is taking place, it's just not possible. I've been reading "Living with PMR & GCA" Brilliant guide to managing your life/condition/meds. And the feedback and support here is second to none as you rightly say.

       

    • molly1957
      molly1957 karen48559

      Posted

      Oh where can I get hold of that from Karen , my rheumatologist just sent me a booklet from arthritis research uk which is really very basic and I think glosses over this condition as if it is just a minor  inconvenience which makes it very difficult when you are trying to explain to people you can not always do the things you want or need to do .
    • karen48559
      karen48559 molly1957

      Posted

      I'm not sure if I'm allowed to post the web address on here but if you google "north east support groups pmr" the first one top on the list should be it. They have a shop and I got it there. It cost £5 and it's a 45 page booklet but I find it so helpful and it's obviously put together by people who know what PMR is about. It's going to be well thumbed in our house I can tell you. It's already put my mind at ease this morning.
    • molly1957
      molly1957 karen48559

      Posted

      Thanks Karen I shall have a look for it the more information the better
    • EileenH
      EileenH molly1957

      Posted

      If you follow this link

      https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

      you will find a link to the northeast website as the second entry. The rest are other useful educative links - all reliable and approved.

      The slow reduction mentioned elsewhere on this thread is to be found in the replies section of that thread.

      You'll all have come across the authors of the book on this forum - and yes, they've all been there themselves ;-) and spend a lot of time trying to educate doctors too!

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