1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

pmr or back issues and tendonitis

Posted , 7 users are following.

cheryl74384
cheryl74384

Rheumy having difficult time confirming pmr, so many other issues going on, had MRI done july this year, sent by a dr who operates a decompression spine clinic,whom i saw and was considering this process for back issues, on off had through the years, also have had tendonitis  on and off through yrs on shoulders, treated with physio at that time, at any rate, MRI showed herniated disk, stenosis of the spine, degeneratvie disk(i,m 68 and have had for yrs) , because their treatment was so expensive, did not go ahead with it yet. Then in Sept, things started worsening, had an attack of severe pain lower abdomen,sep 5, gradually pain decreased over few days, but saw gp in meantime, wanted me to have xray on shoulder,(was starting to bother me, thought was tendonitis at that time), and pelvic ultrasound on abdomen and pelvic area, because i was going away on fishing trip booked previous year, had to wait til i returned to have all those tests done, returned sept 19, had urine spec, some bloodwork done(don,t know exactly what) and pelvic ultrasoud, external, and internal done. tests came back pelvic ultrasound,showed nothing significant, shoulder showed some arthritis, calcium build up, not enough to cause the incr pain i was having, of course i was having tightness, pain, buttocks, glutes as well then. Urine test came back showing some blood in urine, and a second time as well same results, had another test cytology for urine done, and appt made for nov 15 with urologist, by oct 9 and 10 pain reached intolerable level, couldnit raise shoulders, dress, brush hair or teeth, etc, saw gp on oct 11th, this is when he said thought i had pmr, prescribed 40 mg pred, referred me to rheumy, first appt was oct 25 th,point of this lengthy conversation is, has anyone out there had all these issues, which apparently rhemy says is difficult for her to confirm pmr diagnosis, even with preliminary bloodwork done, some levels raised ,etc.. she did taper from the 40, said if pmr, should have been managed at 15 mg, so, from oct 12 at 40 till now, have tapered to 20  7 days ago, of course symptons have returned to a degree on rising in am, ? only able to sleep 4-5 hrs, which put down to prednisone affects, extremely fatigued throughout day, then by evening seem to feel somewhat normal, pain subsides after i,m up early, takes bout 5-6 hrs,,to do that, i know these are a lot of details, but don,t want her to incr by dose back up when see her this mon, nov 7, and don,t want her to miss diagnosis, if pmr, so anyone had these many issues, hard to sort out what is going on with my body, 

0 likes, 11 replies

11 Replies

  • Handbrake
    Handbrake cheryl74384

    Posted

    HI Cheryl, sorry your having such a painful time, certainly sounds like PMR symptoms. Blood tests for esr and crp are raised in some people with PMR but not all. If you had a pain free response after starting your prednisolone then chances are it is Pmr. The starting test dose for PMR is 15mg but some need to up their dose to get the relief.40 mg is a dose usually given for relief of GCA . The secret I found was to stay at a dose where you are pain free enough to keep active without experiencing prednisolone side effects.

    the difficulty for you is prednisolone can also thin your bones ( in my case 8months of treatment led to osteoporosis in lumber spine and hip region) bone loss is thought to be greatest in the first 6 months of treatment. So it's definitely worth looking at your diet to improve your calcium intake preferably more fruit and veg as opposed to dairy. Your dr may also offer you calcium and vit d supplements also.Definately worth getting your vit d level checked especially if you don't spend much time outdoors. Also vit k2 mk7 is worth looking into to help get calcium into your bones ( instead of sitting as deposits in your shoulder area!)

    the sleepless nights disappeared for me once my dose got to an appropriate level for me. 

     

    • cheryl74384
      cheryl74384 Handbrake

      Posted

      well thank you handbrake, as yet don,t have any tca symptons, but think gp started me high pain was intolerable, at any rate, as i said, i am now having symptons, that i experienced leading up to the initial big flare, so not sure if because dose has lowered too quickly or what is goingy on, i have changed my diet quite a bit, last few weeks, lots of water, lots of fruit veggies, low carb, low fat, because trying to control cholestrol levels too, too myself off crestor(a statin), bout oct 5th, was convinced after lot of research , crestor (which i had been taking since last jjan) was responsible for triggering all this,although dr wouldn,t say statin responsible, did say i did the right thing stopping crestor when i did, and that was before gp,s temporary diagnosis,
    • Handbrake
      Handbrake cheryl74384

      Posted

      Your welcome🤗 Definately sounds like you've dropped to quick but also suffering prednisolone side effects....it's a delicate balance and a lengthy process. I was able to drop 2.5mg a month initially until I got to 7.5 mg then it was 1mg -0.5 reduction. Prednisolone only addresses the pain symptom of PMR so take it slowly. 

  • EileenH
    EileenH cheryl74384

    Posted

    If it is PMR then you should be able to manage pretty well on 20mg - even if you need a couple of weeks to adjust to the change in dose. So you do need to be patient.

    The doctor's problem is that SHE doesn't want you on high dose pred for possible PMR if it isn't either and it does sound possible it could be something else. PMR is just the name given to a set of symptoms caused by an underlying disorder. In our cases on this forum it is an autoimmune problem that makes your immune system attack blood vessels and makes them inflamed. Usually this sort of PMR responds quite dramatically to 20mg pred (there are exceptions) but there are also no tests to confirm it, the diagnosis is made on the basis of symptoms and signs of inflammation in blood tests. There are several other things that can cause similar symptoms - including late onset rheumatoid arthritis and cancer. Youmention a sharp abdominal pain - and that isn't really typical of PMR. 

    The symptoms you describe are fairly typical of "PMR" - but the difficult thing is to work out what is causing it. Your other problems do confuse the situation so I see where the rheumy is coming from. 

  • ricky23486
    ricky23486 cheryl74384

    Posted

    the spinal decompression treatment  help to decrease the pressure on the nerve roots  from the spinal stenosis and disk  compression.....  
  • Loulie
    Loulie cheryl74384

    Posted

    I have pretty much all the same issues Cheryl and have had a raft of tests, MRIs etc, but am ahead of you in time as I have had my pmr for three years now. I say this because I agree with Eileen, you need to settle into a dose of 20 or 15 mg of pred and I think over time you will improve. The way I feel now is nothing like it was in the beginning, so take heart. I have had enormous confusion trying to ascertain if the pains I get and the difficulty I have walking are caused by pmr or spinal/hip issues. I had always blamed the latter, but since finding this forum, I am convinced pmr is more likely. Pred is an anti inflammatory, so should assist (given time) the arthritic pain in your spine (which perhaps is what has happened to me). Good luck because I sooooo understand your pain!
    • cheryl74384
      cheryl74384 Loulie

      Posted

      thanks Loulie, want to add, if you too have experienced this being on pred, for 5-6 hrs in am, still have symptons, allthough not near as bad when first went on high dose, then fatigue follows, but by late afternoon, early evening, almost feel normal, how is that happening, does it take that long for pred to kick in, even fatigue disappears somewhat late in day, until about 9-10 pm, can,t figure that out
    • Anhaga
      Anhaga cheryl74384

      Posted

      One of the irritating things about PMR and pred is that people metabolize the medication differently.  So, yes, it is very common for some people to find it takes a long while to get relief from their dose and then the relief doesn't last the whole 24 hours.  Others, and I count myself among these lucky ones, seem to metabolize more slowly, so I notice very little difference in how I feel over the course of a day - I'm more likely to notice increased pain or stiffness owing to other factors, like too much (or too little) exercise, rather than variation caused by dose timing. 

    • Loulie
      Loulie cheryl74384

      Posted

      I cannot say that I experience the same timing of symptoms that you do. For a long while, I had great pain at night in bed and was on Tramadol and Amitriptyline at bed time to help, but thankfully that has passed. In the early days I had way more pain in the mornings too. It has all settled now and I have 'good' days and 'bad' days. For no apparent reason I can be just knocked out with fatigue on some days and not on others. I have split my dose of pred (as suggested on this Forum) so, while currently on 12mg, I take 2mg with my evening meal and then at around 5am I wake, have a small amount of yoghurt and take the remaining 10mg. That seems to be working for me and keeps me fairly even. What time of day do you take your pred? Some days I have dreadful leg and ankle pains and suffer from agonising cramps at night, then on others they disappear. It is a roller coaster ride and the pains in my experience move on. One thing I would say is taper very slowly, never more than 10% and when you get down to around 10mg then adopt the DSNS method spoken of on this Forum.

    • judy20492
      judy20492 cheryl74384

      Posted

      Cheryl,

      I have has PMR for two years, on Pred for 15 months working down to 10.5 after a couple of flares. I have PMR, fibromyalgia, spinal stenosis, and need a hip replacement. Symptoms and treatment get confusing. I figure if the pain is bilateral, it's probably PMR.

      I too have to wait 5-6 hrs to start to feel normal (whatever that is these days). If I could only feel as well in the morning as I do the previous evening, I would be so happy. Every night I pray for a good start the next day. Alas, that has not happened yet.

      Best to you, Judy

    • cheryl74384
      cheryl74384 judy20492

      Posted

      yes judy, so strange each evening i feel semi normal, don,t understand, does it take that long for pred to work in my system now,? or after the daytime fatigue leaves me to a degree, then something picks me up, i am at a loss with all these symptons, anyway, see rheumy on monday, hoping she has narrowed things down, like i could have issues causing glute and hamstring pain, with back, but what is causing bilateral soreness pain in am, so confusing, k thanks for your input, good luck to you
Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.