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47 yr old newly diagnosed with PMR

Posted , 12 users are following.

ksrkelly
ksrkelly

Hi everyone,

My name is Kelly and I have just been diagnosed with PMR after a year of pain that started in my L thigh/hip.  The pain changed this summer and it is now in both hips and my right arm.  The arm pain is excruciating at night.  My mom also had PMR and was diagnosed at age 56.  I had my first elevated Sed Rate, 34 and CPR >14, in 2013 but I didn't have pain then.  At the time the elevations were not looked into.  My most recent tests are SR of 47 and CPR of .98.  Bilateral hip x-rays normal.  I was finally started on Prednisone on 09/06/15 at 20mg but have yet to see results. I was supposed to taper to 10mg starting tomorrow.   I expected to feel better already.  My question is this...are there patients out there that take longer to respond to the Prednisone in the beginning?  Everything I've read seems to show that most people have a dramatic turn within 48 hrs.  My GP is keeping me on the 20mg for now.  She is trying to get me in to the rheumatologist ASAP, current appt isnt until Dec 1st.  Hate my insurance, but thankful to have it at all.  I have now had this pain untreated for a year, and it is like nothing I've ever felt before.  I can't even straighten my left leg anymore.  I am going to PT as well.  Any advice from you pros out there would be most appreciated.

Thanks so much!!!!

Kelly

0 likes, 29 replies

29 Replies

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  • ksrkelly
    ksrkelly

    Posted

    Thank you to everyone who responded.  A couple questions that were asked...yes I've had my VIT D checked and it was just 18.  I have started taking Vit D supplements a few weeks ago.  As far as a fibromyalgia dx, I don't think it would be that.  When looking over the sypmtoms for it, I just don't have those.  I watched my mom with this wretched disease for 9 nine years before she passed away from lung cancer.  She was diagnosed with lung cancer 6 months before passing.  My sypmtoms are classic PMR, and if it isn't that then I'm not sure where we go from here.  I'm staying on the 20mg for a few more days, and the doc is going to call on Monday.  Do you think there is any corelation to how long I was in pain untreated, 14 months, and the amount of time it takes for Prednisone to start working?  A few people also mentioned it took about a week for them, so maybe there is still hope.  Again, I really appreciate all the responses I got.  

    Kelly

    • ptolemy
      ptolemy ksrkelly

      Posted

      If your vitamin D was 18 that is quite low and may have caused aches and pains. It takes about three months for the supplements to start doing their work, so some of the pain may be down to the vit D. 
  • VickieS
    VickieS ksrkelly

    Posted

    So sorry you're not getting any relief. I'm one of the weird ones who required a much higher dose to get thing under control. Before I knew I had PMR, I was given a steroid injection and like magic all my horrendous pain diappeared in the next 4 hrs, but after a couple of days it all came back again. When I was diagnosed, I was started on 20 mg, which helped a little, but then got in to see a rheumatologist 5 days later. He bumped me up to 30 and gave me a kenalog injection. he wanted me to check back in 3 days, and when I did I said I was somewhat better but still having a lot of shoulder & upper arm muscle pain, and burning groin pain, and upper thigh muscle pain. he upped me to 40 mg, and all that dissapated. This was last September, and I've been able to reduce to 7 mg and doing pretty well. Don't give up yet, you may be someone like me who just takes more to get it under control.
  • Oregonjohn-UK
    Oregonjohn-UK ksrkelly

    Posted

    I started on 30mg and reduced to 25 within 5 days, and then down to 20 within another week. at this point you have to start to reduce a lot slower until you reach the maintaintance dose remembering not to exceed the 10% rule.  At 15 mg this would be 1.5 mg so reducing at 1 mg is OK until you reach 10.  Don't be keen to drop too fast as this can cause more problems.

    My 'symptoms' vanished within 4/5 hours after being in constant pain for weeks.

  • EileenH
    EileenH ksrkelly

    Posted

    After 5 years of PMR not being recognised and therefore not treated I had a dramatic response to pred in 6 hours - so time before dx isn't necessarily significant. 

    The criterion for "is this PMR?" is a 70% global improvement in symptoms within a week in response to a dose of 15-20mg, for some people it takes far less time. Patients who have a lot of bursitis, tendonitis and/or synovitis will probably take far longer to respond - and hip/groin pain is a sign of that. Some patients do need taht higher dose - but when significantly more is required there should be questions being asked as to whether this is "just" the PMR we discuss on this forum. It is possible to have PMR symptoms because  of another inflammatory arthritis - late onset RA (LORA), psoriatric RA and palindromic arthritis. 

    In addition tot taking that pred you do need to avoid the activities you find aggravate the symptoms - not forever with luck but it does help the symptoms fade quicker. Many people feel better and go and do all the things they haven't been able to do for weeks/months - and wonder why they suddenly feel rubbish again. 

    You need to stay on the 20mg until all the symptoms have improved and are stable - i.e. as good as they are going to get. Then you reduce in small steps to find the lowest dose that gives you the same result - and a fixed aim of 10mg to start with may not be ideal, some people take a long time to get down to that and especially if they are a bit resistant to pred in the first place. It is thought that as many as a third do not respond optimally to pred - they will need a higher dose to get things under control. Don't start to reduce yet - there is no hurry, the tortoise won the race!

    • LayneTX
      LayneTX EileenH

      Posted

      Just for more reiteration... hee, hee... exactly as Eileen said above!

      I think my doctors think I should have NO pain now!   They just don't know.  I do think many of my pains are now bursitis or tendonitis, except shoulders and upper back and other back issues,  but I'm pretty sure I started as PMR!!  Meaning PMR in addition to... I started Prednisone 15 mg for 5 days and maybe 10 % better (90% pain), then they up'd me to 20 mg for week, that dropped my pain level to 75-80%... though I didn't really know what the pain levels were until I got educated here on this forum.  So ANYTHING better than the 100% pain! Over a month or so I was able to raise my arms better to brush hair, ... 

      Also, I'm really, really trying to learn to relax, my BOWEN gal is helping me with that.  You'll hear about Bowen later in your process. ;>)  Or heck, maybe now.  It's amazing when I get tense, my entire body, well, actally the PRM areas, just really tense up!  

      Best of luck to you!

      Regards.

      Layne

       

    • ptolemy
      ptolemy LayneTX

      Posted

      Layne, my rheumy thought that I should take steroids and I would then be able to carry on as if nothing had happened! All pain gone, no PMR symptoms. I wish.
  • karen28161
    karen28161 ksrkelly

    Posted

    You know what half of these rhumys haven't got a clue of all the pain we are in .......just cut down on your steriods and you will be fine ...........they haven't got a bloody clue ,wish they could experience our dreadful pain just for one day !
  • ksrkelly
    ksrkelly

    Posted

    Just a little update...yesterday I started to see an improvement.  No stiffness when I got out of bed, and no limping most of the day.  Today, my arm pain is less and I was able to sleep last night.  I still have quite a bit of pain in my L thigh/hip but I'm willing to take any improvement at this point.  It sounds like most people aren't pain free on the Pred, but better, so I'm hoping this is a turning point for me.  Thanks to everyone who responded to me.  It's great to know that I'm not alone dealing with this.  I'm sure I will be touch again soon!  Hope you all have a great day!
    • ptolemy
      ptolemy ksrkelly

      Posted

      I am so glad things seem to be improving. I have never been completely pain free on pred but a million times better than before diagnosis. The important thing now is not to overdo it now you feel better. Just take it easy.
    • EileenH
      EileenH ksrkelly

      Posted

      Yes, as ptolemy has said the important thing now is to make sure you don't overdo it - becauseif you do sure as eggs is eggs the pain will be back. The pred helps manage that pain and stiffness but you must do your bit too.
  • ksrkelly
    ksrkelly

    Posted

    Hi everybody.  Quick update.  I have now been on 20mg of Pred for almost 3 weeks and am set to decrease on Wed.  Here is my dilema...As far as the stiffness, fatigue, arm pain, limping, night pain and R leg pain, I am SO much better.  However, I have had a severe pain in my L thigh that has not been touched by the Prednisone.  I'm seeing my GP tomorrow about this because she thinks the Pred should have taken away all the pain.  What do you guys think of  that?  It seems to me that many people are not pain free on Pred, and still have other pain that they manage.  It is possible that there is a different process going on, but I wanted some advice before I see her tomorrow.  Do many of you take pain meds in addition to the Pred?   
    • Anniecurd
      Anniecurd ksrkelly

      Posted

      Hi, I'm sorry you have so much pain. My doc first put me on 10mg, didn't work, then 15mg, still didn't work. Then my rheum gave me a shot of pred, worked like a charm. I have no pain and so much energy that I have to keep telling myself to slow down, but you know how it is, you're so anxious to get everything done before the pain comes back. I'm no expert, I've only had PMR since June, but I would be hesitant to start reducing if I still had pain, unless the doc thinks there might be another reason for it. My doc told me I could take Tylenole along with the preds if I needed it. If it takes away the pain it might be due to something else.
    • EileenH
      EileenH ksrkelly

      Posted

      The fact that this pain is on one side only suggests it is something beyond the PMR - probably bursitis which will eventually respond to oral pred but would respond far faster to a steroid injection.

      If only - I know a few people for whom all the pain has gone - but it was very rarely in the first few months. I had a dramatic improvement in the stiffness and a lot of the muscle pain within a week but the trochanteric bursitis (thigh/hip) and tendonitis and synovitis (hands and feet) took months to disappear altogether.

      Your GP is wrong - follow this link

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

      and about half way down the first post you will find a heading "Bristol paper". Print it off if you can and take it to your GP, if not you'll have to ask her to get it up on screen (which she can) and read their outline. This is from a top PMR rheumy and his group at the time and presented for GPs at a conference for them in Edinburgh. It is to help them diagnose and manage PMR better. She should read the diagnosis part closely.

      They say that the pred should achieve about a 70% global improvement in symptoms - that could either mean everything is 70% better or it can mean that some things are even more improved and some things aren't. That is what has happened to you. 

      The group working on PMR in Leeds found last year that PMR does affect hands and feet (lots of doctors think that is not so) in the form of tendonitis and synovitis and are also wondering whether dealing with certain things in a more targeted manner will mean you can manage with a lower dose of oral pred overall. I know plenty of people, including myself, for whom that approach has worked well. If you have inflammation in bursae, tendons or joints then that takes a lot longer to fade with oral pred - the blood supply isn't as good so they get a lower dose and it takes longer. 

      Three weeks even at 20mg is not long and this group recommend 6 weeks at the starting dose until the symptoms are well improved. If you have raised blood markers then they should really be down to normal range and not still falling - that is a sign that the existing inflammation has been cleared and now you can look for the lowest dose that keeps each day's new inflammation under control. Every early morning your body sheds cytokines in the body - they are what cause the early morning stiffness and pain. The rest was accumulated over time.

      Also don't allow her to reduce your dose by more than 2.5mg at present and preferably less - the advice from top experts is that any reduction should not be more than 10% of the current dose. That's 2mg here - and for some people it would need to be 1mg because they are so sensitive to a change in dose.

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