advice please

Posted , 13 users are following.

Hi

After years of pain I was diagnosed with fibromyalgia a few years ago, gp kept putting my all over including chest pain down to this when in turns out I had severe angina and a heart bypass in Dec 2016. following this I was referred to a rheumatologist who diagnosed PMR, and put me on prednisolone, which have helped I have got down to 5mg, However can I ask people to they still get pain, I have pain still in my top back, my chest and arms, obviously with the  heart problems I worry with the chest pain, but its better than before I used to take the pred but still have pain, I have an apt to see my cardiologist next week but just wondered if any one else still gets pain with the pred. I have also put on around a stone in weight since taking this and find that very hard to shift also.

Many thanks for the time to read this.

xx

1 like, 12 replies

12 Replies

  • Posted

    I am never pain free.  I’m going to 6 mg using the dsns method. I’ve never been pain free; if I do too much ( which believe me is nothing) I pay for it the next day.  Increasing the pred doesn’t help all that much.  My pain and stiffness is in my groin and legs, sometimes in the night in my hands and feet. Hope you feel better soon! 
    • Posted

      Hi many thanks for your reply, to be honest my pain has always been my top half, before the pred I felt like I was dragging someone around on me from my neck down, and the pred did reduce my CRP levels dramatically, but the pain has never really all gone and just wondering if pain in the chest area is normal. I think I do to much I try to be like I was last year, and I think I need to tell myself more I cant
  • Posted

    I am one of the fortunate ones. Prednisone for me eliminates completely the pmr pain. Prior to the pmr diagnosis and prednisone, both shoulders felt like they were dislocated. My hips ached. My hamstring muscles on the back of both legs felt like they had been hit with a baseball bat. My hands regularly cramped and I had an ache all over feeling. I had great difficult getting up from a chair, I could not sleep lying down and I could not drive. One dose of 60 mg prednisone and everthing went away. I am now down to 4 mg and still no pain.
    • Posted

      My issues to a T. today is the first day without pain since beginning of October. Started on 20mg then after a week increased to 30. Still not much relief. Started split dose yesterday with great results today! Took 20 in the morning then 10 in the evening. I will continue this for sure..... Just hoping this continues!
  • Posted

    You might have fibromyalgia as well as PMR. I've known a lot of people in my PMR group on Facebook and other places that have both conditions. So I don't think it's even a very unusual situation to suffer from both diseases.

  • Posted

    Hello Lindsey. Can I ask when you started on Prednisone and what dose did you start on. I am thinking you might have reduced too quickly. Have you ever increased the Prednisone to see if helped the pain. Cheers Kathy

    • Posted

      HI

      I started on 20mg and was told to reduce 1mg per month, but I have stayed at 5mg for a while, I don't want to increase again as I am finding the gaining of weight an issue

  • Posted

    I have had a heart bypass and I also have either PMR, Rhuemy. , no diagnosed yet, but every time I get a pain in my chest I question what is the cause? I just try go keep my cardio. Dr. aware of what is going on.
  • Posted

    You will stand a chance of losing the weight if you cut carbs drastically - it has worked for a lot of us, I lost over 35lbs of PMR and pred-associated weight and have kept it off - as long as I don't eat more than a minimum of carbs. No cakes, bread, rice, pasta etc etc and very restricted root veggies or fruit. Both have high carb levels and are enough to prevent me losing weight. It is to do with pred changing the way our bodies process carbohydrate. It really is worth trying.

    The level of pain relief you achieved with your starting dose is your guide - if the pain increases as you reduce then you have gone too low. Some people are nearly pain-free, others are not. Not all the left-over pain is PMR though - myofascial pain syndrome and piriformis syndrome are both more common in people with PMR and as someone has already said - you can have fibromyalgia too. The pain that goes with pred will be PMR and other muscle-related things. 

    I get returning pain that isn't directly PMR, it is due to myofascial pain syndrome and it mainly affects my lower back, shoulders and neck. Some of it will go away with a slightly higher dose of pred. There are lots of discussions about it on the forum. MPS causes tight/spasmed muscles and can irritate nearby nerves which then cause referred pain. It causes 3 pairs of trigger points to form on either side of the spine, in the shoulders, about rib level and in the low back where the babies dimples are. The rib level pair can irritate the nerve supply to the ribs and that can lead to chest pain.

    • Posted

      Hi Eileen,

      I’ve never been pain free on pred, it’s just the level of pain that changes. How do you tell whether the recurring pain is from reducing pred too fast/too low, myofascial pain syndrome, piriformis syndrome or a relapse? I’ve managed to get from 50mg to 25, but from then on each milligram drop has not been pain free and now that I’m down to 11mg I’m experiencing quite a lot of pain in all the areas you mention could be myofacial and piriformis pain or coming from my bulging back discs acting up agai, plus my frozen shoulders never entirely went away.  So far I haven’t found any pain relief that takes it away, ( have tried over the counter meds, Bowen therapy, massage therapists, back strengthening excercises, etc) and yesterday decided to increase a few mgs to see if that helped. I bumped it up to 13 but nothing. I have to have a tooth out tomorrow and dr wants me to take 25mg today and tomorrow just in case, then drop back to my 11mg but I’m really struggling with pain at that dosage. 

    • Posted

      It is surprisingly common to still have some pain - whatever doctors think and tell people. Discs are likley to cause back muscle problems. If they are confident it is PMR rather than anything else causing the symptoms then it sounds as if you are a person who just needs more pred because you don't absorb a lot. As I keep saying, the bioavailabilty ranges from 50-90% - your 11mg may be a lot less effectively than my 11mg.

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