Hi there I am new here. I was diagnosed with mr in December though I had the symptoms since about June. Had blood tests done scan to find out what was wrong which par did not show up
Was taken to hospital with chest pain and kept in for a few days
Now they have decided I have per i was started on 20 mg of prednisone and felt so much better practically no pain
My go asked me to reduce by 2.5 every two weeks now on 15mg but pains are back terrible shoulders, chest , ribs , hip
Seeing my go tomorrow .
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Emerlad_70
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Think your GP doesn’t know much about PMR, and is treating your reductions as he would with other illnesses.
Firstly you need to get built up inflammation under control, (6 months of it) - best way to do thst is stay on starting dose for a least a month (certainly 2 weeks at the very least).
Then you need to reduce slowly (best monthly) to find the correct level to control your inflammation (which is still being produced every day) - every two weeks is too quick.
Have a read of attached post - will give you a better idea of how these illnesses work - so you can ‘educate’ your GP - in the nicest way of course -
Hi Emerald and welcome to us lot. I think that it takes four to six weeks to clear up inflammation before it is a good idea to start reducing. You are going to be on it a good while anyway so quality of life is key. Look after your needs first and then the doctors!
I was also diagnosed with Polymyalgia Rheumatica and have been on steroids since the diagnosis (last March) and after joing the Health Unlocked PMR forum - to be honest I was pleased to be given a name for my pain so I could look into it, I slowly realised that I did not seem to have the same symptoms everybody on the forum had, and after posting info about my last flare - two of the Sage's on the forum said they did not think I had PMR, more like Palindromic.
I agreed and researched it and still agreed, and convinced my GP last week, but he can't override the Rheumatologist's diagnosis so has referred me back to them - waiting list here in NI - 3 years. So still on steroids for PMR which I shouldn't have been on in the first place and will take another year to get off them
In fairness, there are no real hard and fast tests for either PMR or PR and the diagnosis is very anecdotal - I was diagnosed when I was flare free so it was all word of mouth. Lots of bloods taken but they don't usually show anything.
Can you describe the difference between the pains you had with arthritis and those you have with PMR? I ask because I cannot seem to get any relief from pains in my bottom, thighs and shins. My doctor said it is probably arthritis (X-ray showed age-related wear) but I don't think this is the case. The pains I have move about and vary in intensity. Also, I do not feel them unless I move, that is I am pain-free if I lie still in bed, sit in a chair or stand in one place (e.g. to prepare vegetables). It is only when I move that the sharp pains occur.
The arthritis pain more when I walk it is in my knees and the back of my neck it’s usually on movement the pmr pain is constant when I am sat trying to relax feels like pressure as well sometimes crushing pain
In agreement with my rheumatologist, I upped the dose to 15 mg about 5 days ago. It has helped the pain somewhat. Can age-related osteoarthritis, which shows in my hips and shoulders (no pain in latter) suddenly get so bad? I'm supposed to get in touch with my rheumatologist again if the higher does not help after a week. On the other hand, I'll be seeing her in a couple of weeks and may wait until then. In any case, I'll report back.
The trouble is as we reduce things like osteoarthritis become more apparent too as the pred is helping them as well. Good luck with your rheumatologist she sounds sensible.
and the paper was written for the benefit of GPs to help them manage their patients better even without recourse to a rheumy. It needs to be combined with Recommendation 3 from this:
which recommends the use of "the lowest effective dose in the range 12.5-25mg/day" - since 15mg is obviously not enough for you at this stage.
You need the starting dose for a good month, preferably longer, before starting to reduce.
And a word of warning - you can't go back to your usual level of activity. The pred manages the ongoing production of inflammation and doesn't do anything at all to the underlying autoimmune disorder that causes the inflammation that causes the symptoms. That chugs away in the background, making you feel unwell and as if you have flu and making your muscles intolerant of acute exercise. You have to do your bit, pacing and resting as needed, and avoiding overdoing things - including carrying heavy things!
Perspiring is one of the side effects of pred. I found it one of the worst. It sounds as if you are reducing far too quickly. I had a rheumy like that he just wanted me to get to 10mg as quickly as possible and said I should expect flares!
Too fast, to soon! I'm sorry you are here, but happy you found us. I believe your GP's taper down is very aggressive, but the "experts," will weigh in on that. I wish you luck on this journey and hope you are not with us too long!
You're welcome. If you're bored and want a laugh or two... I write a blog about having GCA & PMR. Many on this site seem to enjoy it... It may or may not amuse you in the dark hours. If you need anything just reach out... there is always someone here.
That's good! Stay at 15 at least as long, a month would be better, and if all well then taper in 1 mg steps. Many of us find a slow taper plan like dead slow nearly stop or Dorset Lady's plan work well for us, especially as we approach the 10 mg level.
Sorry, should have mentioned... the GCA/PMR blog posts are between November 2017 and present... there are lots of other misc posts not related to GCA/PMR.
Welcome Emerlad,you have been given all the information you need in the previous posts,this forum will give you plenty of support,please keep posting to let us know how you are getting on .
Can only echo that your tapering is almost certainly too fast. At an appropriate dose you won't lose the deathly fatigue but you should be close to pain-free.
Welcome to this wonderful, informative forum where the members are full of wisdom, humour, compassion, and overall support!
Sorry to hear that you’ve been struggling with undiagnosed PMR for some time now. I did as well, for 5.5 months before diagnosis, which was a very scary, painful time.
I too had a young, inexperienced rheumy who gave me a “textbook taper” which caused a flare and I had to go back up to my initial dose for several weeks before tapering again. Now my wonderful GP oversees me and I’m managing my condition much better, almost pain free.
Take to heart the suggestions that have already been made and advise your GP that you need to go back up to a dose that controls the inflammation (and pain). Then taper much slower and stay at each dose for a month. You could ask for 1mg uncoated pills along with 2.5mg tablets to achieve a smaller drop each time.
Symptoms rule and you know your body better than anyone, so advocating for your health and how you manage your condition may be necessary. If the Dr. says she is concerned with long term pred use and side effects, you can mention that you need what you need....leaving the inflammation unchecked could lead to more serious complications than side effects of pred (not all people experience all the listed side effects, especially at lower doses).
Wishing you all the best moving forward. We are here if you have any questions, or just need to vent. Let us know how you make out.
Pain is much better again such a relief I am under a bit of stress at the moment which doesn’t help I’m sure my son in law passed away in November and it is so very hard seeing my daughter is such a bad way
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Hello - I am new here
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New here; undiagnosed; suspecting PMR
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