hi i am 50 years old and was diagnosed and started treatment on predisolone 40mg redusing slowly i am down to 12mg and my symptoms have retuenes mildley is it just a case of upping and then reducing again to get the managable dose.
Hi and welcome.You don't say how long and what you call slowly - tell us more and we can offer more suggestions. There are several reasons for a return of symptoms but without knowing more I can't really help.
40mg is the usual starting dose for GCA and will cause a response in other inflammatory problems so normally PMR would be started on 15 to 20 mg with the 70% improvement in symptoms within a couple of days being typical of PMR.
Looking forward to hearing more!
Hi Michele
I to am new to PMR (7 weeks) and started off on 15mg of Pred, then up to 20 and now on 25mg. Depends how quickly you have reduced from 40 to 20, even at 5mg a week it should take you a month which seems very quick.
if it were me I would up the dose by 5mg to see if the pain was more manageable and then reduce slower at say 2.5mg per 2 weeks. Good luck.
Could you take the time to fill out your profile please, you can do this by clicking on your name in your post.
If you can put in, when diagnosed, what amount started on, what rate you are on now. This helps when answering questions.
As EileenH says, welcome but we need to know a bit more.
hi started on 40mg 16th may im a reducing by 5mg every week the when got to 15 mg reduce by 1mg a week now down to 12mg some stiffness returned in shoulders lower back so dr increased by1mg for a week to see if makes a difference and i am waiting to see a rheumatologist.
That is far too fast a reduction in PMR after 15mg. You need a few weeks at each dose before the next reduction to make sure the inflammation is still under control and no reduction should ever be more than 10% of the current dose, which it still is for you, but many patients can't even manage that "overnight" so to speak.
We feel a much slower reduction, spreading a 1mg reduction over a few weeks, is much less likely to result in steroid withdrawal pain which is so similar to PMR pain it is impossible to tell the difference.
hi started treatment 16th may 2014 40mg reducing by 5mg the symptoms went it was such a great feeling to not hurt now down to 12mg and some stiffness in shoulders and lower back are back spoke to gp and put back to 13mg for 1 week and then reduce by 1mg a week and back to see gp in 1 month and waiting to see rhematologist.it all started last october just started siezing up could not turn over in bed pain in shoulders and lower back and hips could not raise my hand above my head worsre in the morning and eased during bthe day and then returned again in the late afternoon.
hi have filled out my profile a little more.
hi Eileen i was great on 15mg no symptoms and also on 14 but started some slight symptoms on 13 mg so i may go backto 14 and stay on this dose for about3 weeks and then reduce by 1mg and do the reducing every 3 weeks its all a bit knew and just a little worried about being on a high dose for a long time . how long does it noemally take to get down to the managing dose that you stay on and what mg is this
sent you a pm (private message)
Can't send you a pm for some reason.
You need a reduction plan which we have and it works for most people.
If you google 'pmr gca northeast' and find the website then you will see how to make contact.
I hope that the increase of 1mg works for you ok. Having read quite a lot of these discussions I get the impression that going to a rheumatologist is best avoided as they seem to want to ween you off of Preds quicker than your average G.P.
I may be upsetting a few other suffers who are happy with their own treatment by their own rheumatologists but this is the general feeling I get. My doctor has not suggested a referral (yet). Good luck with whatever treatment you follow and do let us know.
Hi thanks for your comments
HI I HAVE SENT AN ENQUIRY TO THAT LINK
My diagnosis was PMR over 1 and 1/2 years ago; started on 15 and now trying desperately to decrease. Went slowly from 15-....to 5 and now it's so much harder to go down to 4mg. After 3 days on 4 mg all my symptoms returned - even worse.
So I'm trying a new approach; taking 2 mg in AM and 2 mg in afternoon.
Keeping fingers crossed as it seems to be working. Still get aches etc. but less than before. GCA is different than PMR but the reduction process is probably very similar.
Hi lois67, just to wish you the best of luck with your new approach and hopefully it will work for you. We all know how desperate we are to decrease our intake of drugs, but please do not allow yourself to suffer even if it means upping the dose slightly for a few weeks longer. My fingers are crossed for you. Good luck.
Hi Michelle. I am reducing slowly and have been for 21/2 years. I find that when I get to 15mgs I can only go down by 11/2.mg I stay on that for 2-3 weeks and then go down another 1/.2, Ask your doctor for a mixture of 5, 21/2 and 1mgs and you can do the mix to get down really slowly. Think most of us have suffered from flare ups so dont get down about it. Just remember the pain you were in when you started and how much relief you have had from steroids. Hope you feel better soon.
The golden rule is never more than 10% drop at a time and to make is easiery try this:
Day 1 old dose
Day 2 new dose
Day 3 old dose
Day 4 & 5 new dose
Day 6 old dose
Day 7&8&9 new dose
Day 10 old dose
so the next 4 days would be old dose, then one day at new dose
Do this pattern till you are on the new dose for 7 days. It should take about 29 days to get from the old dose to the new dose.
Then start all over again.
If however you feel at anytime what you think is a flare. Stop, go back to where you were its too soon to take the drop, Wait a week or two then start again.
Think of PMR like a forest fire, enough water and you dampen it down and its controlled, not enough water and it flares up again and you have to pour more water on to dampen it down again, so a trickle seems to work.
Let us know how you get on.
hi mrs k ,thankyou for the plan ,i have increased to 15mg for 1 week then i am going to reduce using the plan you suggested. its weird as all my blood tests came back ok but the symptoms are there and was defo better after 4 days of starting the steroids.fingers crossed .
Hi i have the plan thanks.