I have not posted anything for what seems a long time now but almost every day I read the latest posts to glean even the tiniest tit bit of new advice! I am now today about to start taking 10mgs of pred following a slow reduction since Diagnosis in Dec 2014. It took a long time for my body to cope with PMR but at present I feel really well!! My question is how long should I remain on 10mgs for? I want to avoid any relapses but equally keen to be rid of steroids pmr etc!!!
Many thanks!
About 4-6 weeks, depending on how you feel and the results of repeat blood tests if you are someone who had raised inflammatory markers at diagnosis.
Thankyou Celtic!
Hi again!
Like you I read these posts every day to learn as much as possible about all of this.
I was started on 20mg of pred a day in feb as my inflammatory markers were sky high. These results have come right down as hoped & my latest reduction took me down to 10mg a day from 11 (have taken it a mg at a time since 15mg).
Going down to 10 hasn't been as comfortable as the other reductions.......I have fluey feelings in my thighs in the evenings, the fatigue is worse & my muscle tolerance is less. I have been on 10mg for two weeks now & due to reduce again in another two weeks but think I'll hold off dropping any more unless I settle on this dose for now. Good luck in your tapering & let us know how you get on, I for one will be interested to know
Pam
Thanks Pam. I had heard before that once people get to 10 mgs its harder to reduce. Your reductions sound similar to my experience from 15 mgs. Its taken me 7 mths to get to 10! I must admit even last night I noticed my arms at shoulder point aching but am waiting to see if its my imagination or for real ( thats one day at 10 so far). Fingers crossed and I will keep in touch.
Hi! I think you have been quite quick, I have taken almost a year to reach 9mg and am just starting the DSNS method of reducing to 8mg. Am feeling my neck stiffening up and getting a bit crunchy today. I had 8 last night following 4 x 9mg the previous 4 days. I think I've had steroid withdrawal symptoms up to now, with increased tiredness, feeling unwell and a desperation to take my tablets. Once taken, within 2 hours, feeling ok again. Don't like the crunchy neck though....
Good Luck with your reductions folks!
Using the DSNS stop method, you reduce over approximately 6 weeks and so do not necessarily have to stay on the reduced dose for weeks afterwards and can move straight on to the next reduction. It has really worked for me. It seems to give my body much more time to adjust to the lower dose. It is working out faster for me which is great news!
Sheila x
Hiya. I was diagnosed Nov 2014 and started on 15mg. I was lucky and reduced quite easily to 10 and I felt really well on that. According to the Bristol plan its no problem to be on 10 for 12 months and it seems that this would be the norm down there. Other places seem desperate to have us reducing like robots. I am on my 2nd week of reducing to 9 (2days of 9 and 5 days of 10) and have that flue like ache in my thighs and my hip SI problem has raised its ugly head again. Perhaps the 10 was keeping that quiet too but I am so tempted to go back on 10 for another few months. It's only the pressure that I feel under that has made me try to reduce this early. Good to share our feelings and know that others are in the same boat at the same stages. Like you I read the forum every day and its my very best friend as no one else can understand our worries about a relapse and how it plays on our mind. Keep in touch so we can support one another in our late 2014 club !!! 
.Mary. BTW my markers have always been normal so blood tests give me no helpful guidance.
Hi poppetpain! We were diagnosed at v similar times then! Thanks for your info. I will see how I go on 10 then as I really want to avoid flares so if staying on 10 for a few months means an even keel i will do so! The other weird thing is that can you believe that not only was a very close friend of mine diagnosed in June of last year aged 56( me Dec last yr aged 51) 2 weeks ago my dad aged 75 has just been diagnosed with PMR!!!! Prior to my friend I had never heard of this illness!! My gp said its not catching ( I havent seen him to tell him about my dad yet) but I find it a little strange! My dad's symptoms were not anywhere as severe as mine and he has responded very well as I did to the treatment although I struggled for many months with the fatigue etc and its only really been the last 2 weeks where I have felt almost back to normal ( just been to Turkey for week so thats why probably! )
I was 54 at diagnosis after a rather stiff & painful Christmas & new year, despite 10 years of working in the NHS I had never heard of pmr or gca until I was diagnosed by which time I was virtually paralysed x
Yes, interesting post! I was diagnosed PMR 29th dec 2014, and was started at 30mg. That was deliberately high, as I had not been able to get to my GP owing to Xmas, and the pain had become more than a little uncomfortable.
Have got down to 10mg now, and been there for about four weeks. At this level, it is the first time I have again become aware of the familiar ache at the back of my thighs, so there does seem to be something about 10mg for me too.
Currently, I'm on holiday in Minorca ( lucky me). I upped to 11 mg for two days when i travelled, as the airport routine seems to stress me, and am considering tapering via the dead slow/nearly stop system when I get back home, by which time things should have settled down a bit.
It does seem that going from 10 down to lower levels has proved a problem time for many, so I am resolved to take my time, and continue to learn from others' experiences.
I am certainly in the late 2014 club, so let's keep posting and helping each other.
Can I join in too as an early 2015 club please 😁? Goodness knows I think I'm really going to need support as I reduce any further! x
Yes diagnosed man 2015 but obviously symptoms in dec. down to 5. Bit achy and slightly fluey but apart from the tiredness ok. Hope you are ok
Down to 5 is amazing!!! Well done you!
I don't feel any side effects from pred (thankfully) apart from chubby cheeks & tummy, the sweating like a navvy & constantly wiped out & dragging myself around bit is hardest to cope with, but I think that's the pmr........who knows?!
Good luck x
The Kirwan (Bristol) plan of reduction recommends a year(!) on 10 mg. I've followed this plan so far, coming down to 12.5 now and plan to stay there for six weeks as the plan suggests. Although this is very slow I've come down from 30 mg a year ago with only the tiniest flutter of a flare at 20mg . My first diagnosis of PMR was in 2000 and I have had two episodes of GCA since then which necessitated going up to a high dose after being on a 'maintenance' dose of 4-5mg and my previous reductions were bumpier. Of course I want to get down as soon as possible and lose the tummy and the moonface but will try to stick to this plan if I can. Softly and slowly seems to be the answer.
Hi to all those above who are having problems, or think they may have, reducing once they get below 10mgs.
So long as you are on the White uncoated tablets which you can cut, you can reduce by 0.5mg at a time, which as you get lower brings you into line with the "not more than 10% reduction" adage. Worth a try. I've gone down from 10mgs to 4mgs without any problems using the slow plan (i.e. Over five weeks) and 0.5mg steps.
During that time, I've flown to NZ, Manchester and Spain plus helping my son move into a new house this last weekend.
I echo Dorset Lady's recommendation to anyone who is having difficulty reducing down through the doses to try reducing in such tiny steps that your body is sort of tricked into not noticing the steroid withdrawal.
I was reasonably lucky to get down as low as 5mg from my 40mg starting dose in fairly textbook fashion before I hit a brick wall with a massive flare which needed a hike back to 10mg to control the inflammation.
I was even luckier at the time to come across a Swedish gentleman who posted on another forum that he had tried unsuccessfully to reduce below 5mg so many times until he hit on the idea of reducing on just two days a week for a couple of weeks, followed by slowly decreasing the number of days at the old dose whilst increasing the number of days at the new dose. It worked and he was able to continue to zero Pred.
When I reached 5mg for the second time, my rheumy advised me to remain there for 6-7 months. With hindsight that was great advice as it was where things had gone pear-shaped previously and so it needed to become my 'maintenance' dose for a lengthy time.
When I started reducing again, I decided to follow a similar plan to the Swedish gentleman, but reducing in just 0.5mg decrements and tapering slowly to each new dose over a period of 7 weeks, so 1 day at new dose, 6 days at old dose, 2 days new dose, 5 days old dose, 3 days new dose, 4 days old dose, and so on. A snail's pace but it worked all the way to zero, and I have been off steroids for 3 years now. A couple of similar plans are also being followed at the moment, for instance there is one almost identical to mine but it separates the two consecutive days at the new dose for those who might be extra sensitive to reductions, so 7 days at old dose, 1 day at new dose, 6 days at old dose, 1 day at new dose, 5 days at old dose, 1 day at new dose, etc.
Very common stumbling blocks seem to be at the 10mg and 5mg doses, and if you reduce in large decrements it is easy to miss the actual point where the inflammation started resurfacing. The beauty of the slowly slowly approach is that it is easier to judge when inflammation might be building and get on top of it quickly with a small increase in dose. Also whilst in the middle of a slow taper from one dose to the other, if you notice any slight return of pain, you can either mark time at your present dose or just return to the previous new dose. However, with any luck you are far less likely to suffer flares with the slowly slowly approach to reducing.
Just another reminder that if you are taking enteric coated pills, they must not be cut. Only the white uncoated pills can be cut. I had a mixture of 5mg red and 2.5mg brown coated pills and 1mg white uncoated pills.
A flare after 4.5 months on Actemra
Pain in mouth and jaw
Going higher than original 15mg to control a flare?
Down to zero and having arm and leg pain
Unexplained headaches
