hi, i am looking for opinions regarding the way my doctor has decided to manage my pred
Posted , 8 users are following.
last week my doctor upped my preds to 30mg as i had a major relapse on the 15mgs that i had been on for 6 weeks.
have spoken to my doctor today who has set out this time scale on pred.
5 more days on 30mg. then drop to 25mgs for 5 days. then drop to 20mgs for 5 days, then 15mgs for 5 days, then drop to 10 mgs for 5 days. then 5 mgs for 5 days.
any thoughts on this would be appreciated, or anyone who has had to deal with this time frame and has found it succesful or not
1 like, 22 replies
Nefret
Posted
Mary_J
Posted
I can only tell you my experience. You don't say what your diagnosis is. Mine is GCA or Temporal Arteritis. I was on 60mg Preds for about 8 weeks then reduced to 50mg in Dec then to 40mg at the end of Jan and I'm now on 30mg. Iam seeing my rheumy on 25th March and by then I will reduced to 20mg. He said he intends keeping me on 20mg for a year, but if I do well and have no relapses I should be able to reduce more within the year. I'm definately no expert but it seems to me that you're reducing too quickly? Whether or not I will have a relapse during the reductions remains to be seen but so far so good. I can just wish you good luck and to say that now you have started this discussion I am sure there will be one of our friends in this
forum that will be able to help more than me. Take care.
Best wishes
Mary x
jennissw
Posted
How awful for you. Did you start out on 15mg, or was this a reduction from a much higher dose?
I ask because your doctors regime seems like it is doomed to keep you into some kind of pain free/relapse circle. Can you ask to be referred to a rheumatologist?
I have been following the Bristol University regime (there is a link to it somewhere here) and my Rheumy follows this too.
lyndajoy
Posted
lyndajoy
lyndajoy
Posted
kind regards
lyndayjoy
jennissw
Posted
many other maladies have the same symptoms as PMR.
The bristol uni regime is this:
15mg for 6 weeks
12.5 for 6 weeks
10mg for a year
after which reduce 1mg per month until 5mg, then review
Mary_J
Posted
Xx
EileenH
Posted
The simple answer to THAT question is: he's not! He blatantly obviously has read no guidelines at all. A recent survey in Leeds showed rheumys knew about the guidelines (though didn't ask if they followed them) but GPs didn't even know they existed. There is no way at all that will work for PMR - it is a reduction scheme of the sort that is used in other illnesses and one that does not work in PMR which is a chronic situation where the symptoms we call PMR are (most likely) the result of an underlying autoimmune disorderand where the cause is long term (see Nefret's post)
You give pred at a dose that will control the inflammation (15mg is usually enough to start with, sometimes 20mg is needed) and then reduce slowly to find the lowest dose that controls the symptoms and allows a decent quality of life. And slowly does not mean 5mg at a time, it means not more than 10% of the current dose (so never more than 2mg, the steps should get smaller as you reduce, 1.5mg at 15, 1mg at 10). And some people can't cope with 10% - even 1mg at a time is sometimes pushing it.
Jennissw is referring to the link in this post on this forum, Click on it to get there:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
In it you will find links to the northeast of England support group website which has large amounts of information designed for both lay and medical people. The British Association of Rheumatologists guidelines for the diagnosis and treatment of PMR are to be found there. They are helpful but not as good as the link to the paper towards the end of the post. This contains details of the Bristol regimen which is far better at preventing flares. It is still faster than many of us find works. The paper was produced for the benefit of GPs who struggle with managing PMR - like your GP.
Since 15mg I have taken steps down of 1mg at a time. Never more. Since 10mg I have spread the drop over several weeks. After 4 years of problems and never successfully below 10mg, since I started the snail's pace reduction I have been able to reduce steadily and am now at 5mg. I am by no means the only person this has worked for and even rheumys are now using it - and finding it works!
Print off the paper and guidelines and take them to your GP. If s/he won't listen - go to others in the practice until you find someone who will listen. If that doesn't work - insist on a referral. If you live near Bristol - ask to be referred there.
I'm feeling a bit unsympathetic towards doctors who don't know their limitations this week - my granddaughter is in Sick Kids in Edinburgh. They have established more in 2 days than the local Fife hospital has managed in 2 years of her severe and life-threatening asthma attacks. If you don't really know - ASK. It isn't rocket science. And when it comes to not wanting to feel that poorly again - we're all behind you Lynda so let us know how you get on.
The risk of course is in the ones who don't know that they don't know.
Eileen
lyndajoy
Posted
kind regards
lyndajoy
EileenH
Posted
Lynda - I posted an indirect link via another post on this site to this paper which describes the reduction Jennissw mentions:
Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis
by V Quick and JR Kirwan
google it and you can read/download/print it off and show it to your doctor.
If you google "PMR GCA UK northeast support site" you should get a link to to a site which has the British Association of Rheumatologists guidelines for PMR treatment - not as good as the Bristol version but infinitely better than what your GP wants to use.
I've explained it all in the previous post - the goal posts seem to have been moved again. It'll appear eventually.
Eileen
EileenH
Posted
If you get the paper and the guidelines in the above post printed off, go to you GP first, if s/he won't listen go to other members of the practice - and if that doesn't work demand a referral.
Good luck
Eileen
MrsO-UK_Surrey
Posted
Although 15mgs is the most usual starting dose for PMR, there are a few people for whom it isn't quite sufficient to control and contain the inflammation of PMR and who have had more success on 20mgs. Those people tend to then fare better by reducing by just 1mg at a time.
You are right in suspecting that your body is going to "protest against the 5 day drop". As Nefret has said, your GPs planned regime is a recipe for disaster.
If, as you say, you are not feeling any better on 30mg, then perhaps the PMR diagnosis should be queried - did you have a blood test to rule out rheumatoid arthritis for instance?
I do hope you can seek the opinion of another GP in the practice and/or request fast referral to a rheumatologist for some expert advice. One of the top experts in PMR has said that every patient diagnosed with PMR should have at least one appointment with a rheumatologist
Good luck and do let us know how you get on..
lyndajoy
Posted
lyndajou
Emis_Moderator
Posted
I will send you a PM shortly but links to patient and within the forums are still fine to post and will not need approval.
Regards,
Alan
alanh
Posted