Posted , 13 users are following.
Hi,
I'm a new member of the group so sorry if this has been discussed already. I've been on 15mgs pred for nine days and symptoms are a bit better but nothing dramatic. Is this common or does it mean I may not have polymyalgia, or may need a higher dosage? I'd love to know how text book you all are! Thanks.
0 likes, 32 replies
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Daniel1143 celia14153
Posted
Many of us started at 20mg. Sounds as though you need a higher initial dose. Response to prednisone is one of the key determinants of PMR. I would definitely suggest you confer with your doctor about a higher dose. If that doesn't do the trick, it may be another disease lurking about.
celia14153 Daniel1143
Posted
Thank you so much, that's very helpful. I'm seeing my GP today. This forum is absolutely fabulous- so much understanding, so many helpful tips. I've always disliked the 'Strictly' use of the word journey but this steroid junket is definitely a journey!
constance.de celia14153
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celia14153 constance.de
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daniel08939 celia14153
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EileenH celia14153
Posted
There should be a noticeable improvement in symptoms within about a week at most although I do know some people for whom it took longer. A study done by an Italian group found that 75% of patients achieved an acceptable and sustained response to 12.5mg within a month - with the best responses being in small women and the poorest being in large men. Which does show there IS a body weight component involved and higher dose compared to body weight is going to achieve a better result. The most recent guidelines for the management of PMR say the lowest effective dose bewteen 12.5 and 25 mg should be used whereas the older guidelines suggested 15mg was enough and reduced the total dose of pred the patients would take. Which is fine - but if it isn't enough there isn't a lot of point taking it is there?
You will find a link to the 2015 Guideliens in this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
about half way down I think.
The Bristol group (link also there) would suggest that if you have had only a small response it may not be PMR but some form of inflammatory arthritis but I think that is a conclusion that should only be come to if 20-25mg doesn't work well. But any higher than that does call into question the diagnosis.
I was text book for symptoms except my blood levels. It didn't make the diagnosis straightforward though and it was over 5 years of journeys to the GP who was flummoxed! Nor did the fact I responded to 15mg of pred in under 6 hours! Rheumy didn't want to know.
Unfortunately, while response to pred is regarded by some as a key component in the diagnosis not all doctors agree. And use of a higher dose really does make it more difficult to sort things out. A lot of things can cause similar symptoms that will improve some with enough pred.
celia14153 EileenH
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Thank you Eileen, that's very interesting and gives me some hope as my symptoms do seem to match pmg. I've seen how knowledgeable you are and the huge contribution you make to this group. We are so lucky to have you. Thanks again.
diana21296 celia14153
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celia14153 diana21296
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Thanks Diana, GP has put me on 20mg for a week to see if it helps. If not we'll have to look for another source of the symptoms. So glad you were helped
EileenH celia14153
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Remember - you have to do your bit. Just because you are on pred does not mean you can go back to doing all the things you normally did. The pred is managing the inflammation and that reduces the stiffness and pain in the muscles. If you have bursitis that will take longer to get better. And the real illness is still chugging away in the background, attacking your tissues and making your muscles intolerant of acute exercise. You have to rest and not overdo things - if you do, you won't feel any better at all.
celia14153 EileenH
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susan81035 celia14153
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Hi, Celia,
I am also new to this group and am so glad I joined! Ive been on 20mg pred for almost 2 weeks now with some, but not significant relief. My doctor told me it may not be polymyalgia and has ordered spinal MRI as well as head CT Scan.I think its GCA because I have bad jaw pain. They dont really agree. I guess my point is, everyone's journey is so different with this! I wish you the best in your search for answers.
celia14153 susan81035
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It's like a detective novel! I do hope your symptoms get sorted out - it's good to know what you're dealing with and makes pain easier to bear. Good luck!
fiona25048 susan81035
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Very new here also. Started on 5mgs. No reaction. 2 days ago upped to 10. Definite improvement in energy, small improvement in pain. Blood numbers not showing high inflammation. Today a biopsy. Really noting on here about weight/dosage ratio. Yes it's a journey. So helpful to have fellow travellers and those further down the path.
Mrs_Hobbles susan81035
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Hi Susan, an MIR and CT scan won't show GCA. If you suspect GCA, urge your doctor to up your pred to 60mg, if it takes the jaw pain away, may very well have headed off GCA! It's not to be messed with! Best of luck!