New to PMR and not liking it
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In April this year I was given a provisional diagnosis of PMR following a chest infection and 2 steroid injections just 13 days apart for severe bursitis in my right shoulder.
It was between these injections that I started with joint pains in both shoulders and hips and generally feeling unwell. I thought I maight have Ross River or Barmah Forest virus and had blood tests for those. In the meantime joint pains and increasing stiffness got worse. I went back to another G.P. who’s suspected PMR, both my mum now deceased had PMR and GCA and her brother my uncle has PMR. My CRP and ESR were both elevated but not by much, maybe decreased due to steroid injections.
Commenced on 50mg prednisolone with miraculous result. This was decreased after 5 days.
Referred to a rheumatologist who initially diagnosed rheumatoid arthritis/PMR and gave me a reducing rate of Pred and commenced methotrexate. Once the Pred reduced to 10mg symptoms worsened and I went back to see him. He then decided I had nerve pain and fibromyalgia but referred me for a nuclear bone scan to exclude bony metastasis from cancer. Was negative.
Saw my own GP at which stage I was on 15 mg Pred she thinks I have PMR and stopped the methotrexate, she also has referred me to another rheumatologist but my appointment isn’t until August 24th.
I now seem to have 4 average days a week , which is variable pain and stiffness, when I can walk the dog, 2 bad days more pain and stiffness noticeably in shoulders and hips when I have to push myself and walk like a 90 year old, and 1 good day when I can play 6 holes of golf as opposed to my normal 18. I am not good at pacing myself.
I really want to reduce the steroid as I am a bit paranoid about the side effects but every time I have tried to reduce I have an increase in symptoms . My head tells me maybe I need a small increase so I have more good days but when I have a good day I feel,the whole thing has gone away and don’t need medication at all.
Does this sound familiar any advice?
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EileenH Guest
Posted
Of course it sounds familiar - because almost everyone is terrified of pred and is desperate to get off it too fast, including many doctors. PMR has a median duration of 5.9 years - less than 20% get off pred in under 2 years and the median time to get to 5mg/day is about 18 months.
So that tells you that to be down to 10mg after barely 2 months is rather fast - that 50mg starting dose was totally unnecessary, you didn't have GCA (where it would have been appropriate) and using a high dose like that muddies the water, many things would respond to that high a dose, and causes far more side effects than was necessary. A maximum starting dose of 25mg is what is recommended, usually 20mg - and if it doesn't respond typically to that, questions need to be asked as to whether PMR is the right answer. Then you reduce slowly to find the lowest dose that gives the same result. And slowly is NOT 50 to 10mg in a few weeks - with or without methotrexate.
You need what you need - all the pred is doing is mopping up today's dose of new inflammation. If you don't take enough the inflammation left over will mount up, like a dripping tap into a bucket, and you will eventually have a flare and definitely need more pred. The actual disease is chugging away in the background - an autoimmune disorder that makes your immune system unable to recognise your body as self and so it attacks it as if it were an invading virus or bacterium. That creates inflammation and swelling - which lead to the symptoms we call PMR. The pred reduces that - but the muscles remain intolerant of acute exercise and protest when asked to do too much, DOMS (delayed onset muscle soreness) takes longer to appear sometimes and definitely takes longer to resolve since the muscles are unable to heal as well as they should. The only answer to that and the fatigue that is part of autoimmune disease, is pacing and lifestyle adjustments. and you have a choice - learn how to do it or hurt rather more than you need.
You say 4 good days, 2 dodgy days and one good day when you play golf. Think about it the other way round: you play golf one day a week - how do the bad and average days relate? Your shoulders are involved, that is obvious - so really, is 8 holes of golf a good idea at this stage? You are by no means the only golfer to find difficulty and various solutions have been talked about. Using a golf buggy, playing some holes but not all are just two.
Taking the dose you need doesn't mean you won't get to a lower dose of pred later - just not yet.
gail39791 Guest
Posted
Thanks again for the reminder, Eileen H, that doctors (especially in the U.S.) tend to rush the prednisone reduction. Once I took it slower when reducing below 10 mg, I had much better results.
Joan, I found that when I pushed myself on those days when I felt good, I paid for it the next day. I know its hard to hold back when you are finally feeling good again, but moderation is the key to longterm improvement of symptoms and reduction of prednisone.
One very important piece of advice...At the lower doses (under 3mg), I actually had to reduce by .25 mg at a time using pill form plus liquid prednisone. The combination allowed me to titrate the dose better. This month I got down to 2 mg after 18 months on prednisone, but felt symptoms slowly returning. Saw my doctor last week and we determined that 2.5 to 3 mg may be my "maintenance dose"
Give it time and be patient with yourself. After 18 months of ups and downs, I'm taking a bucket list trip on Friday to do some "horizontal hiking/walking" in the Swiss Alps. A year ago I could not imagine doing that, as in the mornings I was walking slower than the 85 year olds even though I was only 55. Plan to do as much ...or as little as my body will allow. I figure the view is worth the trip and I may never fell better than I do right now.
Many thanks again to Eileen and others here who guided me through some tough times!
Michdonn Guest
Posted