Prednisone up and down
Posted , 13 users are following.
I was diagnosed with PMR in the middle of September of 2017. Put on 20 mg Pred, pain went away in one day. Stayed on 20mg for 30 days then Doctor lowered to 15mg. Pain came back bad in 5 days. Doctor put me on 30 mg for 30 days pain went away. Doctor lowered to 20mg and for 30 days and still no pain. Doctor lowered to 17.5 mg for 30 days and still no pain. Doctor lowered to 15 mg and pain came back worse than ever in 3 days. I went back to17.5 mg for 15 days and pain still terrible. I went to 25mg for 5 days and pain is better so i went back to 17.5mg 2 days ago and so for still about the same.
All the blogs I read say after 4 months they are down to 12.5mg or 10mg. Is that the normal or am I different. Mine is so up and down.
0 likes, 12 replies
janice85211 MR._BELLA
Posted
Hi, I was diagnosed 4yrs ago and started on 15mg Prednisolone, since then I have been up and down on dosage. I did get down to 3mg but am now back up to 15mg. I see the specialist for my yearly check on Thursday so am wondering what they will say.
I have learnt a lot on this forum, one thing being , let your body tell you what it needs and the ' two years and you should be ok ' does not work for everybody !
We will get there in the end, take care ?
MR._BELLA janice85211
Posted
Anhaga MR._BELLA
Posted
As I see it your problem is the doctor's rather strange way of reducing your dose. The steps are too big and your body can't cope. Have you seen the dead slow method?
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
MR._BELLA Anhaga
Posted
Anhaga MR._BELLA
Posted
No reduction should be more than 10% of the dose you are taking. So a reduction from 30 mg should be 3 mg, from 20 only 2 mg; at 15 it's a good idea to start reducing by only 1 mg at a time. At the really low levels many of us cut a 1 mg tablet so we can reduce by .5 mg at a time!
MR._BELLA Anhaga
Posted
ida40908 MR._BELLA
Posted
If I was you I would want to be referred to a rheumatologist who follows “best practice “ guidelines.....and specialises in these matters....ask around who is the person to go to.
you could also see another GP. Your body, your money, second opinion could also be good......listen to what yr. body tells you.....what you are prescribed now seems very unusual....I am not a doctor, it have had pmr now for 9months, so got a bit of experience..look after number one which is you. Succes, Alida
MR._BELLA ida40908
Posted
susan29426 MR._BELLA
Posted
It took me 2 years to get from 20 to 12.5, and now I'm on Actemra because I couldn't get any lower without severe pain. Members here suggest a much slower decrease, and I've found that the doctors don't really understand that. Generally, each drop should be 10% or less.
BettyE susan29426
Posted
There's a Nobel prize waiting for anyone who can make doctors listen to each other and to their patients instead of reading an out of date check list.
I realise every day how lucky I was with my GP and my newly diagnosed sister has also had excellent support so they are around. Trick is to find one.
EileenH MR._BELLA
Posted
Your GP has no idea at all what he is doing and he has caused the problem. You have got into a yoyo pattern and each swing makes the next more difficult to cope with.
20mg was a perfectly reasonable starting dose - but a drop of 2.5mg would have been better, even better would have been a 1mg drop or possibly 2.5mg drop using the DSNS approach Anhaga has mentioned. A month there and you could have tried 15mg but I suspect you need to go just 1mg at a time - some people are just very sensitive to changes in dose.
If that doesn't work - then your GP does really need to consider that maybe this isn't "just" PMR. But trying a rather more gentle reduction is where you need to start.
MR._BELLA EileenH
Posted