symptoms or side effects?

With that timetable you won't have much time for work!!! Look after yourself.

Many 'experts' treating us with steroids for PMR and GCA like to reduce the dose as quickly as possible regardless.  However, both PMR and GCA do not respond to steroids being reduced in the way that they are reduced over the very short term for other conditions such as asthma/chest infections and the like.  In the case of PMR/GCA, the reductions should be tailored to each individual and reduced as and when either the blood tests show an improvement and/or the symptoms are under control, and the latest thinking is that no-one should reduce by more than 10% at any one time.  However, at the very high doses, it may be possible to reduce in slightly larger decrements (that was my experience anyway).  The guidelines state that we should be reduced to the lowest dose that maintains the inflammation but the only way of knowing which dose that might be for each of us is to reduce slowly and in small steps.

I don't know by which doses you have reduced from 50mgs to 25mgs since November, and you haven't said how you are feeling.  If you had blood tests showing high inflammatory markers at diagnosis then these should be repeated before each reduction - if there is no improvement in either the blood tests or the symptoms then the reduction should be delayed.

If you are feeling well, then you may be able to reduce to 20mgs in a few weeks time followed by a reduction to 17.5mg a few weeks later, then to 15mg after another few weeks.  At that point, it would be wise to go very much more slowly.

Ann, if you look at the pinned threads at the beginning of the discussion group, you will find a couple of links.  One is to the North East support group which has a lot of very useful information, including an online PMR/GCA forum which acts very much like a virtual support group - especially friendly and welcoming for those who are unable to get to a 'live' group.

If you click on this link above it will take you to another thread on this forum. In the first post there are links to an info site and to another forum which works much more like a support group - we talk about everything, not just direct PMR advice, but all the different aspects of life with PMR as well as grandchildren and families, holidays, other problems, the lot.

The last link in it is to a paper written by top experts to help non-specialists manage patients with GCA and PMR. Your GP needs to read it - to get from 50 to 25 in 2 months when uyou have GCA is very very fast. These experts spend a month at each dose 60/50/40/30 down to 20 - it takes them 6 months. Recent research (from a group in London, UK) suggests there are markers of GCA inflammation still present after 6 months at high dose pred (that is above 20mg) even though there are no symptoms apparent or raised blood markers. Taking the pred away too quickly simply results in the symptoms recurring - and it has been said for a long time that flares of GCA are common in the first 18 months. This research provides evidence of why that happens - higher for longer seems indicated for safety.

1 mg every few days would work well for anything acute that had needed a high dose to deal with the inflammation. PMR and GCA are NOT acute problems, they are both due to a chronic underlying autoimmune disorder, they may be the same, they may be different, it isn't known which. As long as that underlying autoimmune disorder is active you will require pred to control/manage the symptoms. Too low a dose - and the symptoms will return. The paper I recommended for your doctor explains this all and includes reduction schemes over periods of 2 years for PMR, 2 1/2 years for GCA which they find reduces the rate of flares to 1 in 5 instead of 3 in 5 as found with other reduction schemes.

In addition to the links, in the 5th and 6th posts on the thread there is a "dead slow and nearly stop" reduction scheme which had been used very successfully by a lot of patients on all 3 UK PMR forums to reduce. Many patients find the 2.5mg drops, 1mg below 10mg, cause something called steroid withdrawal pain. Spreading each drop over a few weeks reduces the likelihood of that happening so that it is easier to identify the long term maintenance dose - you are rarely able to reduce your pred dose straight to zero. You are looking for the lowest dose that manages the symptoms until the underlying autoimmune disorder burns out - in the case of "just" GCA, if you reduce very carefully avoiding flares you often can get off pred relatively straightforwardly but patients with PMR often struggle to get to zero straight away.

I hope your GP will listen to this advice and consider it carefully - because reducing 1mg every few days will almost certainly leave you in a state of flare.

I will take this information to my GP hoping that she is receptive.

i have reduce d to 25mg , should I just stay on that dose until I see her on the 20th  January, we are going for a family holiday to the beach on Sat for a week. 

Thankyou again

Thank you.

I have ordered the book Polymyalgia Rheumatica a nd Giant Cell Arteritis: a survival guide, by Kate Gilbert. Should arrive tomorrow and will also have info on diet etc, so will be paying attention.  

I'm vegetarian and generally eat a healthy diet, but I do drink tea and coffee and a nice glass or two of wine! . I've upped my dose of Manuka honey to 2 Teaspoons/day. I used to take a spoonful when low.

Has anyone else read this book?

What DOES make a difference I believe is cutting carbs drastically - both with regard to weight gain/loss with pred and to blood sugar levels.

I found following an anti-inflammatory diet very helpful - if I veered off my oily fish in particular for any length of time, I would notice the symptoms more. You can research anti-inflammatory foods online.

I have been having Manuka honey for many years now - never miss a day.  

Bear in mind that coffee and alcohol can place further stress on the adrenal glands - you may not notice it on the higher steroid doses but try to cut down when you reach around the 7.5mg level where the adrenals will be trying to get up to speed with producing their full complement of natural steroid again as you withdraw the artificial steroid.