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Sore in the mornings

Posted , 12 users are following.

jan_37704
jan_37704

I am 69 and was diagnosed with PMR late Nov 2017.  I have had a negative temporal artery biopsy which is great and no eye problems or jaw pain while chewing. I have not seen Rheumatologist as yet as they are on holiday as it's summer here in New Zealand. I started on 15mgs prednisone and ibuprofen and not enough and then I went up to 20mgs and Celebrex. I did my 1st reduction of 2.5mgs (on phone advice to GP from rheumatologist) a week ago ( which was 6 weeks from diagnosis) and I wake quite stiff and sore. Shoulders, hands and neck and back are all like this but once I have had my prednisone I take about 90minutes and I improve and am not too bad for rest of the day. I am supposed to drop another 2.5mgs in another week. Any advice and are my morning aches and pains considered within a normal parameter for PMR?

Thanks Jan 

1 like, 15 replies

15 Replies

  • shelley45866
    shelley45866 jan_37704

    Posted

    My Rheumatologist kept me at 20mg for 3 months, then started the taper of 2.5 per month.  I did not have any pain until I reduced below 10, then a slight increase in pain every time I reduced. On Pred for about a year total.  Have been off of Pred for several months, still have some muscular discomfort - it comes and goes - but is manageable with Ibuprofen, max Ibuprofen of 600mg per day.
  • Anhaga
    Anhaga jan_37704

    Posted

    I don't think you should have this amount of pain once you are on pred if it is being caused by the PMR.  There are other things which can cause pain as well, have you any history of arthritis for example?  I wouldn't expect celebrex to help PMR at all, although I know it is prescribed for arthritis - I was given a prescription for celebrex but decided not to take it.  Pred has controlled my PMR very well indeed, from starting dose of 15, and I'm still taking it at a low dose after 2 1/2 years.  Some people do need more to start and it appears you may be one of those people.  You should not be tapering until the pain has been properly brought under control.

     

  • Reeceregan
    Reeceregan jan_37704

    Posted

    Let me see I’ have this right. You are currently on 12.5 mg and have only been on for one week and will reduce in one more week to 10mg. If that’s the case, and this is only my unqualified opinion, I’d stay on the current dose until you have little or no pain. If you found that you needed 20mg to ease your symptoms in Nov then this is quite a fast reduction. Obviously if you can cope then go for it but it isn’t a race to the bottom, it is to find the dose you can manage with. No one wants to live with pain, it’s better to have no pain and quality of life. Early morning pain is normal with PMR till the pred kicks in, and Eileen  can explain why that is, it has to do with 2am inflammation time clock I believe. I have both PMR and GCA, diagnosed 31.5.17 and started on 50 mg. I’ve tapered to 9mg over the last 7.5 months and that was a very fast and not entirely easy reduction with setbacks here and there and I now use the DSNS method of tapering. I will not take Celebrex or any NSAIDS as they can affect the stomach, I’d rather panadol/codeine mix if I have unbearable pain but that’s rare, and usually tells me my reduction isn’t working, go back up again for a short time. Normally I take the pred around 6-7am and I’m good to go about 8.30, and can get through the day relatively unscathed from then on. So short answer after a long reply (sorry) ...yes, early morning pain is normal. 🤪

    • jan_37704
      jan_37704 Reeceregan

      Posted

      Hi,  I started on 15 mags and not enough. Went to 20 and now on 17.5. I am expected to go to 15mgs in a week. As I am on holiday and cannot see Rheumatologist until beginning on Feb I will stay on 15 until seen. IF I am too sore I will go back to 17.5. I should try again without Celebex and see what pain is like. I have one puffy wrist and shoulder which during the day are quite uncomfortable otherwise not too bad once prednisone does it's job in the mornings. 

    • Reeceregan
      Reeceregan jan_37704

      Posted

      Hmm...puffy wrist and shoulder? I could be wrong as I’m not medically trained but I didn’t think they were symptoms of PMR. I  thought they were more symptomatic of RA or some other form of arthritis. I’d hate to suggest that you may have both but it’s certainly not uncommon from what I’ve read and would explain why the pred helps the PMR pain but not that puffiness. At one point my rheumy thought I may have had both as every bone he pressed made me jump but that has eased and he has changed his mind. One point for me 🙄

    • EileenH
      EileenH Reeceregan

      Posted

      They aren't typical of PMR if they are just one-sided but puffiness can be part of PMR. And frozen shoulder or shoulder bursitis are commonly confused with PMR and vice versa.

       

    • EileenH
      EileenH jan_37704

      Posted

      Celebrex doesn't normally help PMR pain and stiffness much - so any pain that comes back if you stop it won't be PMR. However - do be very careful taking both Celebrex and pred, they can cause gastric irritation so shouldn't really be used together (nor any other NSAIDs such as ibuprofen). 

  • darlene36688
    darlene36688 jan_37704

    Posted

    My Doctor told me a "negative biopsy"  doesn't always mean you still cant have it.

    The doctor who did my biopsy didn't get enough specimen to get a diagnosis and it came back as negative which was not true. All the lab work gave a definite yes for GCA/PMR.

    Was diagnosed appx. 2 years ago with Sjogren's Syndrom (another autoimmune disorder)

    I too am 69 years & was diagnosed August 2017.

    My prednisone started @ 60mg. in the emergency room, three weeks later I saw my rheumatologist & he reduced it to 40mg. Later was reduced to 20mg., then 12.5 mg., five days ago back up to 20 mg. because the GCA is acting up.

    Hopefully, I can get this latest flare-up under control & discover where my prednisone comfort zone is. I know the goal is to get as low as possible or off that drug completely.

    I feel like I'm so new to these awful autoimmune diseases I can't  begin to help anyone but I do love all the advice I see on this forum. Many people offer great advise. I found a couple of questions to ask my doctor.

    Hope you find your "comfort zone" with the prednisone and start to feel better soon.

    • Reeceregan
      Reeceregan darlene36688

      Posted

      Yes, totally agree regarding a  negative biopsy. This could just  mean they didnt get any giant cells in the small area they biopsied. I had a negative biopsy as well but i had been on pred for 6 weeks before I saw the rheumy who organised the biopsy. My original diagnosis was by my GP who didn’t believe it necessary, I had all the symptoms including the vision disturbance, headaches, sore scalp, jaw pain, massive weight loss, even a drooping eyelid. I looked like I’d had a minor stroke. He started me immediately on 50mg as the risks were too high to wait around for the specialist appointment ( minimum of 6 weeks in Australia]. He knew that unless the biopsy was done in the exact area of giant cells there was gojng to be a negative result anyway. He didn’t risk it and think goodness he didn’t. GCA should always be a clinical diagnosis, the biopsy is more a backup. 
  • Michdonn
    Michdonn jan_37704

    Posted

    Hi Jan, sorry to say welcome to the PMR club. Hope your journey is not too bumpy. I had to stay on 30 mg for about 6 weeks to get PMR pain free. Every case and every individual is different, but I will not taper if I am have PMR pain. I also try not to taper greater than 10%. I split my dosage about 3/4 in morning after breakfast and about 1/4 at bedtime. I also use the DSNS taper method: https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439 . I am very active, think positive and try to keep smiling. Good LUCK. 🙂

    • jan_37704
      jan_37704 Michdonn

      Posted

      Thanks for your support- not nice condition to have at all
  • Joydeck
    Joydeck jan_37704

    Posted

    I am 68 years-old and was diagnosed with PMR late in October.  I tried lower doses of prednisolone but soon ended up on 24 mg, split 17/7, taken at 8 am and pm.  Splitting the dose gave me 24 hours relief instead of just 9 hours, beginning in the late afternoon.  If my dose is a little too low, PMR inflammation begins to show itself, in the outer shoulders, after a few days.

    I'm now on a 12/7 split, having briefly reversed the taper by 1 mg on three occasions.  Even at pred doses around 20 mg per day, a 1 mg a week taper is too quick.  I have found that reducing the evening dose leads to morning pain.  

    For the last 6 weeks, I have been free of PMR symptoms most of the time.  

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