:o Am new on here though i was diagnosed 2 years ago. I often read the postings on here though for a bit of encouragement.
Had managed to get down to 7/8 but over the past week pain steadily increased.
Usually syptoms reduce by evening but last night and once before had to take cocodimol to get me to sleep. Called GP who told me to take 15 and then start reducing again. Have no idea what reduction to make. Any ideas?
Katie, what rotten luck. This has happened to me in the past ( and not only me! )
Did your doctor tell you how long to stay on 15?. With me it was six days and I then had to go to 5 for 4 weeks and then reduce at half a mg. per month.
I am not by any means saying that you should do the same, just giving back up info and sympathy.
There will be others along, I know. Do keep in touch; it is a big help on the darker days and fun on the good ones.
Good luck. Betty
Katy - what a shame! I too had a flare at about 7mg/day but I manage my own reductions (so can't quote on that) and have not yet been able to get back below 8.5mg/day. Mainly because I tried to reduce at 1mg at a time (I take my dose as double on alternate days) but now I am trying it 1/2mg at a time it seems to be going better. I'm sure though that this is a typical \"8mg is my dose for the moment\" sort of flare and the pain is the PMR starting to reappear.
Betty - presumably you had your flare at 5mg/day?? So it was a burst of pred to reduce the inflammation and then back to where you had been?
I had a look online and found a doctor (in the UK) who says she finds problems arise at 10mg and again at 7mg (I won't go into the details of why here but her reasoning is fair enough) which certainly agrees with what many people find. She starts her patients on 30mg/day (which is highish according to the Guidelines) but tapers them quickly to 15mg in a week or so and then takes 2 to 3 weeks to reduce to 10mg. Then she slows the reduction even more from there. If the patient has a flare she goes back to 15mg for a week and then does the same, reducing as slowly as possible to avoid a repeat of the symptoms returning.
Certainly, this is much the same basis as my arguments have been for very slow reductions and marking time if there is any sign of the PMR appearing again. Some doctors think that the adrenal glands are less efficient anyway as we get older and that is why PMR increases in incidence with increasing age - the pred is acting as a sort of replacement therapy in some people, so if you are one of these if you stop the pred your PMR will reappear. Since noone knows yet what causes PMR it's a reasonable theory and fits a lot of scenarios seen.
However - what is your GP up to? :roll: He/she is the one with the medical degree and being paid a lot to make these decisions :wink:
If it were me in the same situation again I would take 15mg for 5 days, reduce to 12.5mg for 5 days and then to 10mg for 2 weeks. If there was no return of symptoms I would then reduce by 1/2mg at a time: either get a pill cutter from the chemist and cut 1mg tabs or alternate 10mg and 9mg per day for a couple of weeks and then try 9mg for a couple of weeks.Then do the alternating dose again (9mg one day, 8mg the next, or 8.5mg every day) and see if you are OK with that. This time though, if the pain seems to be starting again go striaght back to the last dose that worked with no problem and stay there!
Hope this helps you make a decision - someone else will offer their experience as well I'm sure.
But do keep in touch - don't just lurk! We like more company!
EileenH
Firstly Im really sorry you have to increase your steroids
In Jan last year I had to go up to 15mg also I had got to 4mg in the Dec up to 5 to cover Xmas holiday and with increasing pain in the Jan I was going up again Id got up tp 10mg but when my Dr saw my blood results she said I think you will need 15 to get this under control and unfortunately she was right
I was told to stay on that for a month then blood tests These were much better but i was a bit tired so she told me to do another week and if I felt OK to do 12.5 for a month then after more good blood tests she said from 10 to do 7.5 over a 2 month period My bloods 2 months later were up a bit so she said do another 2 weeks then reduce gradually It then took me until the September to get back to 5mg I had got to 2 after another 8 months but recently had to go up to 4 after aches and pains After that flare up I really felt very jaded for at least 2 months
My bloods are very sensitive and a good sign for me She doesent bother with the reccomended guidelines I need to be 5 on both to feel really good
I sailed through with my first bout of PMR but this one has been different and i think she saw the flare up as a sign that it wasnt going anywhere !!
She has offered me a Rheumatologist appt if I had another flare up but she is very thorough and does listen to you and as we work together on this Im happy with her
I think your Dr should have said a bit more !! ie take it for so long then come back or given you a plan b if 15 didnt work !!!!!! Do you have blood tests and if so are they a good sign of how you are feeling ??? How often do you see him ???At the start of my PMR I was going monthly then when it settled 2 monthly and Im given a blood test form just in case I have another blip as she feel you should hit flare up hard
Do let us know how you get on and I know what a mental blow it is when you appear to go back to square one ( I did start on 20mg though )
Best wishes
Mrs G
I really feel for you having been reduced far too quickly from 15 to 10 initially and then horrendous problems and up to 20 and slowly, only 1 mg a month to where I am at presently at 14mg..... know I am going to have to go much more slowly when I reach 10mg...
So brill advice from these wonderful ladies and from me,slowly and carefully and small amounts only..... good luck :P
Eileen et al When I had to return to 10 it was a flare at 4mgs.. This was in my second episode but, looking back at my 1999 - 2002 records I see that I had a flare at 4mgs. also and went up to 5 for 2.5 months, 4.5 for 2 months and thereafter 0.5 reductions all ok until I got to 1.75, then back t 3 for 2 weeks,2.5 for 4 weeks, 1,75 for 4 weeks thereafter minscule reductions down to nil over 3 weeks. Happy to post full record if anyone wants. It's there somewhere on this forum back in the dark ages.
Hello again.
Thanks to all your kind comments.
Last Thursday I called the on call GP as I was felling terrible. She had no recent blood results to go by.
Yesterday I was due a blood test as have been diagnosed with a heart mummor and need various tests. So these were taken together with my normal bloods.
My normal GP rang very early this morning to say that my ESR was 73, by far the highest they have ever been even after taking 4 days of 4 mg. She put me up to 20 with another test in two weeks as she wasn't sure whether she should put me on 30!!
Am beginning to wonder if I will ever feel normal again. 
Yes, you will, Katy - I had to go from 2.5 (the lowest I had ever been) up to 40mg earlier this year.
Am now on the way down, 12.5 at present till the end of the month.
I am now just beginning to feel that 'normal' - whatever that might be for me - is in sight!
Nefret
Hello Katy
Yes you will very definitely feel normal again but unfortunately it takes time and lots of patience!
Both my ESR and CRP blood markers were very high, the CRP being 150, so do not worry too much about that as the 20mgs should soon bring that down.
I was diagnosed with a heart murmur some years before PMR and GCA and the subsequent Echo Cardiogram revealed a slightly leaking mitral valve. I do hope you get your results of the test soon and it turns out to be insignificant.
Do hope you will start to feel better soon.
MrsO