I was diagnosed with pmr in Oct 17 and started tapering my pred around June this year and am now down to 5mg. However, I wake up in pain which I can deal with I get up take my pred it eases but it doesn’t completely ever go. However today I woke up and could barely turnover in bed it was like going back to the start!!!
My question is should I continue to taper and suffer the pain and struggle through it which I am happy to do if needed or should I increase pred something I am loathe to do. I have been covered in spots and rash since I started tapering and I feel I have a gut problem made worse by pred. Don’t ask me to ask my gp because he doesn’t have a clue!! Just says “you know your body taper when you can!!”
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You don’t say what dose you started on, or why you stayed at that dose for 8months (if I read your post correctly).
However getting down to 5mg within 6 months is too fast, you have obviously gone below the level you actually need. Can you remember at what dose you felt okay? If so, go back to that, stay for a month and then reduce at 1mg or 0.5mg a month unless you get a return of symptoms. If so, don’t reduce until you’ve sorted the problem.
Your GP is partly correct, you do need to taper at your own pace, but a bit of guidance wouldn’t go amiss!
No point in struggling through - you need the level of Pred you need!
I've just suffered my first flare, two years with PMR and like you I've put up with some pain and stiffness thinking it was best to taper as much as possible, I got down to 1mg. Now I realise it was a mistake, while I've been putting up with it the inflammation has been very gradually increasing in the background until I felt very ill, as soon as I increased my dose I felt so much better. I'd forgotten how nice it is to move freely and without pain.
Looking back on my blood test results over the last year it shows the gradual increase and while some were in the normal range they were definitely going up each time until the last one was outside the normal range.
Hindsight is a wonderful thing and I won't be doing it again! I'll listen to my body in future.
Thanks Daisy, I feel such a fool though. Thinking 1mg and two paracetamol was enough to finally get me off pred, while all the time the inflammation was slowly building up in the background. Now I'm on more than I was a year ago! Seems like all that suffering was for nothing, might as well have been pain free for a year. Ah well, live and learn as they say.
No no don’t beat yourself up! You are doing brilliantly. We are just trying to get by as best we can. You did what you thought was best. It will come good. Xxx.
Daisy i couldn’t have said it better myself. Getting angry and telling ourselves off benefits no one. We are all doing the best we can under horrible circumstances.
Happy new year to you and hope this year is a good one for you xx
Oh sweetheart I wish you every possible happiness despite this pig of an illness. Actually I love pigs. Can’t say the same for PMR!! You and all of us have to stick together as it’s a brutal situation we are in Holding your hand across the miles xxxxxxxxx
Hindsight is such a great thing!! We honestly sound like we have been on the same journey although getting down to 1 mg is amazing!!
I now understand I truly do. Perseverance!!! Stay on the pred for as long as needed. Like you I was determined to get off them, suffered unnecessary pain for what? To go back to where we started!!!
I wish you so much luck with all this and let’s hope by the end of the year we will both be in a better place health wise. Take good care.
Thank you so much. Wishing you luck too. It doesn't help when doctors tell you it will burn out in 2 years. In October I was panicking I only had 3 months left to get off pred. This forum has helped me so much to get the right information.
PS Just to add I now have a different doc who seems to understand it better. He really sat and explained in detail how the inflammation is like a fire and if you don't put enough water (pred) on it it will slowly smoulder and eventually flare up again when you will have to put on more to make it go out. I liked that analogy.
Interesting - must have been reading the forums! Because that is how I have often described the inflammation of PMR - have been using the analogy for the best part of 10 years
I was diagnosed in Oct at was prescribed around 30 mg for 4 days then reducing til I got at 15mg which I stayed on for a while. Sometimes it all a blur not going to lie but I know I stayed on 10mg for 5-6 months on gp advice and me not questioning it. Then June I caught shingles and blamed the pred ( it does say it’s a side effect) and was then determined to get off them cos I was stupid.
I took 7mg this morning as felt so unwell but still ache so much this afternoon which is unusual as normally feel better as the day goes on.
RunRabbitRun - thanks so much for that advice. I am definitely going to stick to it!!
Gosh! 30mg-15 in 4 days is extreme!! Normally an initial diagnosis would mean you were on a higher dose for a while and then they would monitor blood tests to see if your CRP/ESR inflammatory markers have responded, and take it very slowly if necessary from then onwards... I would talk to your rheumatologist again or your GP if you are not under a Rheumy...Hope you get sorted and start to feel better!
Trying to battle on is mostly totally counterproductive - you end up back at the start! The symptoms are caused by left-over inflammation not being managed because the dose is too low. It mounts up and evetually - bang! You are not tapering to zero - you are looking for the lowest dose that manages the symptoms as well as the starting dose did and that is where you need to go back to. On average it takes 18 months to get to 5mg - you are well ahead of schedule.
What might help is adding 5mg for a week to get the accumulated inflammation under control - you can drop to the lower dose quickly but it does mean you need to know what the higher "right" dose is. And I suspect you don't?
Darling it’s not your fault. Your gp is a d***head who, if he doesn’t know how to manage your illness should have the decency to refer you on. You need monitoring and advising cxx
I wouldn’t suffer on Osteoqueen, it’s pointless and bad for you. It should be possible to be almost painfree and mobile while the disease rumbles on. I am loathed to increase , we all are, I saved myself from a full blown flare at 6 mgs approaching 5 mgs by adding an extra 5 mgs for a few days. I was able to return to 7 mgs and now I am reducing again.
I am taking 10 mg today in the hope I go back to being pain free. If so I will do as you say go down to say 7mg next week. I hate hate the thought of increasing but I have no alternative. Your advice in invaluable honestly.
Thank heavens for DorsetLady and PMRPro, I am their pupil and have had a much better quality of life through their sound advice and knowledge. The love and care on this site is phenomenal!
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