Posted , 15 users are following.
Hi, all I'm new to this I have just been diagnosed with PMR, my doctor has prescibed a 30mg a day, from what I have read it seems a very high dose to start on, any advice please
0 likes, 37 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
Anhaga jean07565
Posted
constance.de jean07565
Posted
Have you high blood markers? Mine were ESR 132 and CRP 100+ so my doctor put me straight on 30mg to 'zap' the PMR. It did within 6 hours. Unfortunately after a few weeks the blood markers started rising and rising so the doctor put me up to 40mg.
This is not usual in PMR and many start on 15 to 20mg and are quite happy with the result. All of us are different.
It also depends where you live. In America and Canada the doctors usually start new PMRers on low levels of Pred. See how you go and listen to your body.
Anhaga constance.de
Posted
EileenH Anhaga
Posted
sandy08116 constance.de
Posted
CRP, Constance, that is high! The only indicator that pointed to something severely wrong was the CRP level. Mine was 76 and GCA was diagnosed. After three weeks of prednisone, it dropped to 4.
Now it has 'stabilised' to 7.
constance.de sandy08116
Posted
After a few weeks I collapsed, in a cafe of all places, and was rushed to hospital. They put me up to 60mg as they suspected GCA, it wasn't, thank goodness. I was in for two weeks and they got me down to 30mg. It took me a long, long time to reduce.
After 5 years I am now down to 5mg but can't get lower - things flare up if I do.
FOR THOSE NEWLY DIAGNOSED WITH PMR.
Please note this is NOT the usual PMR, so don't panic. Most people get off Pred within 18 months to 3 or 4 years.
Michdonn constance.de
Posted
Hi constance.de.how long did it take to get from 30 mg down to 10?
Thanks! 🙂
constance.de Michdonn
Posted
Sorry Michdonn, I'm afraid I can't remember. My PMR was 'naughty'😀 - the blood markers were up and down like a yo-yo. About 3 years ago they levelled out, ie were in the 'normal range' ESR between 12 and 22, CRP also 'normal'. I was stable for about 14 months then things started going haywire again, CRP is again normal now, but ESR has risen to between 42 and 49 - not tragic but my doctors want to keep an eye on it.
Michdonn constance.de
Posted
Thanks constance.de, I understand I have the same problem trying to figure out my status last year, but since the flare I have been keeping a log every day. Keep smiling and pushing forward with a smile on my face. 🙂
diana21296 Michdonn
Posted
It has taken me 19 months to get from 30mg to 10. Quite fast down to 16 with lots of pain on advice from rheumy, but then decided after consulting the forum that I would be better off from then on reducing half mg every 4 weeks as very steroid sensitive and didn't want the pain. Feel off for first 5 days although can carry on as usual, but fine after the body gets used to the drop. Hope this helps and good luck.
Michdonn diana21296
Posted
Hi diana21296, my Rheumy and I do not agree, but I will not reduce unless I am PMR pain free. Up 30 mg after a bad flare currently down to 20, slow reduction 2 week intervals, after being on 30 for about 6 weeks. So far no PMR symptoms on this reduction. Good luck, keep smiling! 🙂
BettyE jean07565
Posted
I have had two eoisodes of PMR, five years apart. The same doctor treated me on both occasions and the first time started me on 30. I was completely pain free within 4 hours and it took me three years to get to zero pred.
Second time I remember him saying" We'll treat it less aggressively this time ( no reason given and, stupidly, I did not ask. Second time I started with 15. There was not the dramatic pain relief as before but tolerable level. As I reduced there were many many ups and downs not a smooth reduction as first time and, although I have never done the sums, I would think I ended up taking more in total than on the first episode. It took five years to get to zero but, four years on from there I have not had any recurrence. Best wishes.
diana21296 jean07565
Posted
Hospital put me on 30mg as had to go to A&E ... so much pain and high markers. Stayed on it for 6 weeks to control the symptoms before coming down to 25mg. Now on 10mg and feel almost normal with a busy life style. Every case is individiual.
Michdonn jean07565
Posted
Hi jean07565, I started on 20, took several days before I got any relief, 4-5 weeks before I felt PMR pain free. On my flare had go to 30 to get relief and stayed on 30 for 6 weeks, now down to 20. Each individual is different and it appears each case is different. Try and listen to your body and don't reduce if you are in pain. Keep smiling and good luck. 🙂
EileenH jean07565
Posted
It is quite high, the most recent recommendation for management of PMR say "the lowest effective dose in the range 12.5 to 25mg". However, they used to use 30mg as a starting dose - the only disadvantage is that you have the extra bit to reduce.