This was one of my great worries. I'm not sure I'e beaten it either but I have detailed some of my Prednisolone experiences on a blog -
http://prednisolone.blogspot.com/
I'd appreciate any comments that others may have. It's a long road this one is.
Peter
Thank-you Peter, this was so helpful for me.
hi Peter, been there as well, now back up to 10mg, was quite upset to realise my pmr was still lurking, really thought i had beat it as managed to get down to 2.1/2 mg before major flare. started on 20mg last feb.
Hi Eileen,
I've just noticed that you have a home in Torrevieja - my ears pricked up somewhat :yikes:
My late hubby and I bought there in 1984. Lived there from 1990 until 2000 and I still have a home there. I'd love to hear about where you are and how often you go.
Just a very strange statistic for you. My Spanish neighbour Jesus developed PMR the same month as me (October 2009) followed by another neighbour (Brit) and then our French neighbour. All within four houses - coincidence? No idea.
Love from Lizzie xxx
PD: I got down to 2.5mgs in February last year but had a flare when my Grandson was ill. Fortunately I only went back up to 5mgs and am now half way through the 7 weeks it takes me to get down .5mgs to reach 3.5mgs (does that make any sense whatsoever???)
Hi Peter,
If you google PMR-GCA UK North East Support (if I type a website, the moderqtor has to check it, I think). If you then go to the website, click on Our stories and among the stories you will find one by Ragnar - that´s me. I think you can get some answers to your questions by reading this story and the other ones too. My doctor gave me a \"falling asleep pill\" called Imovane (or Zopiclone), which I used when I felt I needed to sleep. As you can see in my story, I was \"high\" on 20 mg Pred when I started and by taking it easy later with the pills, I haven´t had any problems. I have been off Pred for three years now.
Good luck
Ragnar
Hello Ragnar
that's really interesting especially your comments about moon face and about fatigue. When did you develop the face thing? I've been on prednisolone for three months now Started at 40 mgs and got down to 20 mg within six weeks. Was proceeding steadily down to 10 mgs when the flare happened so I'm now bakc up to 15 mgs. Weight gain hasn't been an issue but chronic tiredness has. I can do things - walk distances, did 7 miles this past weekend - but I end up falling asleep in the chair afterwards. This never used to happen. Maybe I'm pushing it all too far and too fast. I just don't know.
best wishes
Peter
Pedr - it is very common to be able to get down to about 12.5mg easily but then the trouble starts if you try to reduce too fast. Some people even find it difficult at 20mg a day when their doctor tells them to reduce at 2.5mg or (heaven help us) 5mg. The big experts say never more than 10% of the current dose and it is always a good idea to stay on a new dose for at least a month before even contemplating another drop. One lady on this forum was told by her rheumatologist to reduce at that sort of rate and was back to square one within days and had to go back to 20mg to get the flare under control. She then - coached by several of us who had been there and got the t-shirt - started to reduce by not more than 1mg at a time and on occasions at 1/2mg at a time and is now at well under 10mg having had few problems on the way.
The medical literature says that almost all flares are associated with trying to reduce the pred dose too low or too fast. There is some evidence to suggest that if you look at the ESR or CRP levels (in patients for whom they mean something) over a period of months you can see them edging up from a low level in the normal range through higher levels that are still within what is considered to be normal until suddenly a sort of threshold is passed and symptoms return.
You have to remember that the pred is merely managing the symptoms which are caused by an underlying disease which the pred has no effect on at all, the autoimmune part about which little is known. That is what causes the fatigue - it's an integral part of autoimmune disease and unfortunately the pred doesn't do much to help it except at the higher doses when the mania of steroids probably cancels out the fatigue. Even those of us who are well controlled have days when, for absolutely no reason at all, we feel about 90 and just want to sleep. I would love to be able to walk for 7 miles - even if I did have to sleep afterwards!
On your way down from 15mg this time try going at 1mg at a time, and stick at the new dose for a month before dropping again. And another tip is to choose a week where you don't have much planned to do the drop - that is a massive help. Ragnar's slow reduction plan isn't just for lower doses - in some cases his genius works better at higher levels too 
Remember, the tortoise outstripped the hare...
Oh, and by the way, I developed the fat face within days of being on a taper from 50 to 20 reducing by 10mg at a time - that has mostly gone but it has taken a few months. I couldn't believe the speed it appeared :oops: :cry: :shock:
better luck next time
Eileen
Interesting that you say the ESR could start creeping up before a flare. Mine did the opposite - suddenly went much lower than ever (6) and all of my joints started feeling unnaturally loose for a few weeks and then all of a sudden shot up to 36 - and all that while on the same dose of Pred. Does anyone have any explanations for this?? My GP doesn't.
It was so weird - I would love an explanation :weird:
Beev
Hi Peter,
When starting to take pred I had lost about 6 kg in weight (13 lbs), so what happened was that I started getting back to my weight before pmr and pred (somewhat too high, I thought). I don´t remember when I started to get a moonface as it was about five years ago and I didn´t keep any good records. The reason I stayed a year on 5 mg was fatigue every time I tried to reduce. When I tried my method to reduce, it was much easier.
Ragnar
i would like to take up eileens point because this happened to me, as i tried to reduce my bloods began to creep back up until finally the symptoms became much worse i had to return to 12.5mg for it to settle down and my bloods are now the best they have been ,saw my gp today says to stay on this dose for another month then react to the next bloods which are done monthly ,she has suggested 12.5/10 alt days if bloods are good .i am very reassured to hear that fatigue is an issue with others because i tend to feel guilty when i rest ,so i am off to watch day time tele while my husband takes down the xmas tree .i had an interview with a 3rd year med student today she had to take down my experiances and relate it to the gp she related all the med facts perfectly but never once related the emotional impact of this condition which i feel is just as important to our well being and i felt i described reasonably well .carol k
Carol, does that mean you were invite to give the student feed-back? If so, what a great idea.
hi i did not feed back at the interview but she will be there for six months so i will feedback next time ,i will be kind to her because i felt she fedback what she thought the gp wanted but my gp is a very empathetic doctor who is very easy to talk to and wants you to manage your condition with her support ,so sees the whole picture this student was only third year so still quite green and her first experiance of community work which is so different from hospital based doctoring ,hopefully seeing people in their own envoiroment will give her greater insight into the impact this and many other chronic conditions have on daily life .carol k
Hi Im new to this but find have found out more on this forum than any doctor. I have been on steroids for 2yrs now. I am down to 13mg a day but it was great to hear others telling how they have reduced dose. Think I tried to go down too quickly. I had horrible weight gain and as I am also diabetic found it awful to cope with. Cant bear to look at sons wedding faces as Im fat and moon faced. I have now joined a slimming club more for the discipline than expertise. It has been painfully slow but have now lost 1lbs. Very discouraging when you have to put meds up and weight gain follows. Was amazed to hear how many people have had to take meds for 5 years. My doctor originally said 2 years but that has come and gone. I am coping reasonably well tho. I have giant cell dis with it and find you don't get much sympathy as people have no idea what you are going through. So glad I found your forum.
Hi Mousemum and welcome!
If you are down to 13mg after 2 years with GCA you are doing not too badly if you had flares. I've got to 7mg for the first time in 4 years even though I "only" have PMR but last year was horrendous and I put on a lot of "pred" weight after being put on medrol instead of ordinary prednisolone. Since I was switched to Lodotra it has melted away, and especially since I tried the 5:2 diet although I realise that isn't for you if you are diabetic.
I know what you mean about wedding photos - my daughter got married at the end of September when I was just about at my worst in terms of hamster face. I was also on crutches! I spent money for an outfit then which I now can't wear as it is about 5in too big on the waist - so be patient, it will improve! As MOB I wasn't really able to hide was I? 
ah well - it was being there that was important, not the photos
Eileen
Hi Eileen and everyone
I haven't been on here in AGES! Sorry - since I retired and got the savage beast (puppy) I seem to have been ridiculously busy.
To update, I am now reducing Pred very slowly and am on 2.5mg/ 0 on alternate days. What is Lodotra, Eileen?
My neck has been a bit stiff recently but ESR ok. Does ESR take a while to rise or is it quick to show inflammation??
Love to all
Beev