hi, i am looking for opinions regarding the way my doctor has decided to manage my pred

It looks like a recipe for disaster to me. What has he done with the 10% rule? Not by any stretch of my imagination could I have dealt with this schedule at any point. I think he's trying to treat PMR as a short term problem which it most definitely isn't, but he would be used to this kind of scenario for chest infections/asthma attacks and the like. I don't think he is used to PMR.

Hi there Lyndajoy.

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

Hi Lyndajoy

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.

thank you mary and nefret, i should have said i have polymyalgia . i myself am wondering if this regime is way too fast and how much my doctor is aware of pmr, as he was totally suprised when i told him i had felt so poorly on the 15mgs after 6 weeks. really dont want to feel that poorly again

lyndajoy

hi jennissw yes my doctor started me off on 15mg and i think my body just got use to this amount and then reacted accordingly unfortunately for me and found myself feeling more poorly than when first diagnosed. even on the 30mg i still have a constant headache, sore shoulders and knees. my doctor has never said anything about seeing a rheumy.

kind regards

lyndayjoy

I really think you should push to see one. Did he decide you have PMR because you initially responded to pred. I am also wondering why he is not more concerned about the headaches (or are they steroid induced).

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

Hi again Lindajoy. I so agree with Jennissw that you really should push to see a rheumatologist. It is your right to see a specialist as you are not getting on at all well with your GP's regime. Let us know how you get on.

Xx

"how much my doctor is aware of pmr"

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

he initially diagnosed pmr from my symptons and blood results, i have been checked for gca and told i do not have this but have been booked into another eye clinic when i stated that i always have a headache. i think by body is going to protest against the 5 day drop and change meds, maybe it will take that for my doctor to understand a bit more about pmr. everyone keeps asking why i have not been referred to rheumy

kind regards

lyndajoy

Moderators - that link is the one I have been told is acceptable since it is within the site. What have you changed now!

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

Lynda - a competent GP can manage PMR, you'll probably wait weeks for a referral to a rheumy unless you can get to Bristol where they aim to see PMR patient with a couple of weeks and suspected GCA patients with a couple of working days.

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

Lynda

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..

thank you eileen i will definately have a read of the post you recommend

lyndajou

Hi Eileen,

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

Hi there, I was diagnosed in December 2010 with PMR. I started on 15mg Prednisolone and the reduction in pain was dramatic. The reduction programme I then followed was slow, and closely monitored. I only reduced 1mg at a time over the next 2 yrs. During the 2yrs, I did have flare ups, and my GP had to increase the dose. I finally stopped taking pred in October 2012, but, in November last year I had a flare up, but the blood tests showed normal. My GP put me on 15mg Prednisolone for 7 days, then 10mg for 7 days, then 5mg for 7 days. Following that I am on 4mg for 1 month, then 3mg for the following month. so far so good, and I am now to reduce to 2mg for a month.