Posted , 6 users are following.
Recently diagnosed 10 days now. Put on 20 mg for 5 days reducing to 15 mg 2 days ago. Virtually pain free then this morning had bad pain in my neck arms and hips. also felt as if I was grinding my teeth all night and jaw/teeth painful but that better now. Is this break through pain normal? Anyway have taken extra 5mg so will see how I go. Thank you for this forum, really helps.
0 likes, 7 replies
celia14153 maria49950
Posted
From my own experience very normal! It sounds as if you were on 20mg for too short a time to stabilise your body's response. My GP recommended me to stick with 20mg for 6 weeks before reducing the dosage. I am now starting a very slow reduction as rapid pred withdrawal can give pain response similar to polymyalgia.10%reduction over 16+ days. You can read about this method on the home page. I would certainly take the extra 5mg and keep at 20mg for a few weeks before reducing very slowly. Such a helpful forum!Others will have advice too.
maria49950 celia14153
Posted
i must be a bit dim but where on the home page can I find the reduction method. Have tried but get no where. Thanks ago for the advice.
celia14153 maria49950
Posted
Hi Maria, my fault. I meant the home page for the polymyalgia forum not the home page for the whole site. Here's the link https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439. Let me know if you can't get it and I'll copy the text in a reply.
nick67069 maria49950
Posted
When you find DSNS method, you will realize that it takes weeks to reduce for each step. This gives our body time to adjust. PMR is a journey that lasts years... no need to rush.
EileenH maria49950
Posted
A 5mg drop from one day to the next from 20 to 15 is simply too much and at this stage you may either find the PMR is still too active or the existing inflammation has not been cleared out enough. That quickly it is unlikely to be steroid withdrawal rheumatism which is very like PMR and confuses the issue. No reduction step in tapering should be more than 10% of the current dose - and tapering is not the same as reducing the dose in a short course of steroid.
If this is your GP show them the paper that is listed here
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
as the Bristol paper. They obviously have no idea how to manage PMR and this explains it - it is from a PMR expert rheumy and aimed at GPs to help them do it better.
PMR is a long term journey, a chronic condition. You don't give a course of pred and that is it - pred will be needed at some dose for years, not weeks or months. It takes anything from 2 to 6 years for it to burn out in 75% of patients, for some of us it is a truly life-time journey but thta is only about 5% of us.
As the others have said, you start on 15-20mg for 4 to 6 weeks, until the blood markers a lowered and the symptoms as improved as they are going to get. And then, only then, do you start to reduce SLOWLY to find the lowest dose that gives the same result. There is no rush - whatever the GPs in their ignorance try to tell us.
maria49950 EileenH
Posted
Thank you so much Eileen. I feel I am drowning as juggling around with the dosage on my own as GP recommendation didn't make sense to me. Will follow your advice and keep taking 20 mg for another 3 weeks was on a week at the beginning of this journey so already one week gone. Will reduce by 10 percent although will have to cut a tablet. I am in South Africa and we have only have preds in 5 mg. my inflammation levels were very high CRP over 100 and Esp 37 .... Dr wasn't concerned too much with the esp (the sedimentation test think it's ESP). After a week my CRP on 20 mg preds my CRP dropped to 12.
EileenH maria49950
Posted
Sed rate is ESR.
If you can't get small tablets try the Dead slow and nearly stop approach with the smallest decrement you can manage:
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
If your CRP keeps dropping like that you may be fine after just 2 or 3 weeks on 20mg - but then don't try to drop more than 2.5mg to 17.5mg in the first step down. You may be fine with that - and if you are it speeds things up a bit. Then try 15mg and see how you go. But it helps to stay at a new dose for a week or so before trying the next stage.
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