Hi, I have been trying to reduce and was doing this by 5mg each time. I got to 10mg and spoke to specialist who advised to go to 5mg. I have read all your posts and knew I shouldn't have but tried it as he said. Within a few days I had lots of pain so I rang him back and he increased to 7.5 and 5mg alternative days and was doing well this seemed to stop the pain. But after 14 days I got pain In my elbows and shoulders but didn't really think anything but then woke up next morning on 14th day and couldnt move my arms properly to brush hair or walk,. Then I realised this it an actual flare up and not withdrawal ? Disheartening. So Took two days of 7.5 and on 3rd day this morning I'm still getting up walking g like a 90 year old so I took 10mg this morning. I was doing great on 10mg before . I know don't know whether to go back to 10mg or go to 8 or 9mg. Do you have any advice please. My arms are still slightly inflammed and painful to use. I just didn't want to go up too much unnecessary. I'm 50 years old and although diagnosed with PMR In Jan this year I was hoping it was more of a virus and would do one but now with my shoulders legs etc hurting again and inflamed maybe I need to accept its PMR. Do you have any advice please should I stay on 10mg for few days then drop to 8 or 9 or just stay at 10mg for a month then decrease by 1mg a day. Thank you so much as you are always so helpful.
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I would stay at 10 mgs for a month, invest in a pill cutter and do a dead slow nearly stop taper with half mg tablets. Pause if you get symptoms for more the 3-4 days and rest it out. You will be approaching the stage where your own Adrenals have to start working, so this will feel harder and should be taken slowly to give them a chance to wake up.
If you hadn't listened to him then you would have missed the lesson you learned for future experience.Don't beat yourself up,it's making mistakes that take us forward feeling stronger.Besides,I reckon I'm the top dog at making mistakes.lol Good luck.
I would go back to 10mg where you were last comfortable and your specialist should be shot for suggesting you drop from 10mg to 5mg. It was just asking for trouble and you were the one who suffered not them. I would suggest once you have hit the PMR on the head to reduce maximum 1mg at a time and possibly even half a mg.
The general accepted reduction for PMR is by NOT more than 10%
So as the others have suggested go back to 10mg for at least a couple of weeks until you feel better.
You could then try going to 9mg (10%) but use one of the Slow Reduction Methods so it’s not so hard on your body then from 9mg go down by 0.5mg drops until you reach the lowest dose that will hold your symptoms.
My dear departed Dr Lim always advocated 0.5mg drops from 10% - she also liked the alternate day reduction but that doesn’t suit everyone, l like the slow reduction & there are options in the Pinned Posts, if you can’t find them let me know.
Thank you all so much for your advice - I will definitely be taking it and lesson learned don’t listen to your Rheumy haha. He says although I have all the symptoms because I’m only 50 but 49 at the time he is reluctant to say it is! So I think he thought lets drop and see maybe. Because of Covid I haven’t actually seen him only telephone consultations. Ill stay at 10mg for a while and then only drop by 0.5. The alternative days was a weird one as every other day I felt sluggish so I will use the slower way to get a more normal and happy life. I have started taking them about 5.30 am ish to give me a head start in the morning before I get up and it works better. Thank you all very much xx
Ask him if he has looked at the NICE recommendations recently? Their tapering is better than his concept (though it isn't brilliant) and they also say "over 40" for the age range.
Obviously not as he actually said I was probably too young! Think that’s why I was hopeful that I didn’t have PMR and it was a virus so I thought 10mg to 5mg might work. Should have trusted my instincts as feel like I’ve gone backwards. Good thing is second day of 10mg and legs and arms easing up already just dull aches now when using them and lot easier to walk when I got out of bed this morning and tomorrow should be even better. 😊🙏🏻 thanks everyone for taking time out to give advice I will be staying on 10mg for one month then reducing 0.5 mg per month or every other month depending how I go - going to now take it very very slowly xx
I had trouble trying to go from 10 to 9 mg, so have tapered 0.5 mg a month. I stayed on 5mg for two and a half months over Christmas as there was a lot happening - family coming to stay etc. Then a trip to visit son and his family followed by virus that had me coughing for about four weeks - night and day for the first week. Presently on 4mg as had a slight flare at 3.5. I will do the very slow taper from now on. Slow and steady wins the race. All the best 🌻
A study done in Bristol recommends getting down to 10mg and staying at that for a year before coming down ultra slowly and going back up one mg if any return of symptoms. Hope you find a right dose soon.
Good advice given, so won’t add......but I’m sure you don’t mean “decrease by 1mg a day”😳....1mg a month please ..or every 2 months- is the recommendation.
If you can get 2.5mg tablets added to your prescription (together with the 5mg and 1mg), then you can "mix-and-match" and won't need a pill cutter until you get right down to 1.5mg per day. My GP allows me to request the right number of each strength of tablet each month, depending on my planned taper for that month, but I also keep a small surplus in case I have to suddenly go up due to a flare.
My Rheumy suggested a quick reduction after I had a flare. I was on 10mg for 10 days and then he wanted me to do 10mg and 5mg on alternate days. Then I was to stay on 5mg. I was skeptical because I have been on steroids for 4 years and always had to do a really slow reduction and had got down to 3mg before the flares started.
So I thought I would give it a try, bad idea! I was great on 10mg and didn't have any problems on the alternate 10mg/5mg days but then after 3 days of just 5mg I felt like I had been hit by a bus. I felt shivery, had cold sweats, excessive fatigue, upset tummy and an increase in pain. First I thought I had caught a bug but my temperature was normal. So I then did a bit of research and realised I was suffering withdrawel. So I upped my Pred to 8mg and all the symptoms resolved. I called my GP and explained what had happened as I didn't want my medical team to think I had ignored their plan. My GP agreed that I should continue on 8mg until my symptoms resolved and then follow my slow reduction (Dorset Lady's method) to get down to 5mg. So that's what I am doing now and I will not be trying that method of reducing after a flare again. It might work for some people but not for me!
Just relating this tale to illustrate that even 4 years in you can still learn from flares. I consider both my GP and Rheumy have been great. However, this time, my Rheumy's plan, he shared with me and my GP, didn't work for me. Seems everyone is different.
I learned the hard way that PMR doesn’t follow any schedule it only does it’s own thing when it’s ready. Do as others suggest with the really very slow method and only if pain free.
Once I got to 10mg I went down 1 mg a month, once I got to 5 mg went down 0.5 mg a month. Stopping at 2.5 mg on advice of rheumatologist until I can get a face to face appt. some tapers have been more difficult than others but have followed advice not to to taper at the end of the month unless feel as ‘good’ as I did at the beginning and has worked so far, best wishes
Morning been there just like you I settled on 11 mg split am pm and it works for me every time I try to reduce it’s hell, now into year 3 but figured at 62 quality of line is the important thing, find your happy place.
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