Hello I've made it to week 2. Had ups and downs this week but have taken on all the advice given on this site. I now do all I need to do at a gentle pace in the morning then rest for the remainder of the day. I saw the GP for the second time yesterday and frankly she could do with looking at this site as she knows hardly anything about Pmr and she has to refer to her phone for information. I asked her should I take vitamin D or calcium tablets and she said yes if I wanted to. Then I asked if I should have a blue steroid card and she'd never heard of it and asked me where I would get one. She doesn't fill me with confidence to say the least.
A question I have is what is the general position on reducing pred when the time comes? I have another blood test in January and if things have improved with regards to my inflammation markers how much should my dose decrease. I'm currently on 15mg and my GP suggested I should then drop to 10mg. But I've read on here some people reduce by only a few mgs at a time. I don't want to end up back at square one. Also when it's time to reduce do you feel pain free or do you still have stiff and ache days?
Sorry for all the rambling but there is so much info to take on board. Thanks.
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holty
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Definitely not 15mg to 10mg in one go. Too big a drop. The BSR guidelines do say 15-12.5mg but although some can manage that, for others it’s too much.
The general consensus of opinion is that any taper (certainly at PMR type doses) is not more than a 10% reduction of your existing dose - so for 15mg that would be 1.5mg. Many just do 1mg a time.
Have a look at this, and try and educate your GP -
Your symptoms are the key in everything, not just your blood markers - so use those to determine whether you reduce - or not. You may experience a couple of days of steroid withdrawal following the new dose - but explained better in link I’ve given you.
For 5 years I traipsed to the GP with textbook symptoms of PMR except for normal range blood markers - nothing wrong with you, age he said. When I finally saw a different GP, a part-time woman who'd been on maty leave a couple of times in those 5 years so almost impossible to have consistent care with her, she recognised PMR despite a rheumy who was intransigent too. If only I had shopped around sooner!
I was diagnosed by one gp in our practice and he is great but i found another gp was actually brill and what she doesnt know she looks up and she promotes this forum to other patients now after she questioned where i was getting my up to date and great advice from!! Its always worth seeing if another doctor has more knowledge. YBB
Good morning (if that’s your time zone)!! There is such a lot to learn - I would try not to take it in too quickly! It is so hard to learn to pace everything. I’m reducing slowly - am now at 13 from 15. For me my days always have some mixture of achy and stiff and sometimes downright sore!! But it will usually depend on what I have done the day before. There is also the complication of steroid withdrawal. I’m trying not to be too analytical and go with the flow!
An expert on tapering will be along soon!
My piece of useless advice is be patient! I call it useless because I can’t follow it - I know I should but.....!
I know I'm finding the patience bit hard as well. When you've spent half of your life running a home and looking after a family it's hard to step back. Needs must tho. Thanks for your reply.
I was diagnosed in September. Rheumatologist gave me a blue card to carry and I bought a rather fetching medical alert bracelet to wear when out and about on my own. Started at 15mg for 2 weeks, 12.5 for 2 weeks, then 10 mg for a month, now reducing 1 mg a month. I definitely feel more tired and achy the first few days after a reduction so make sure I get lots of rest then. Have never been entirely ache free but 80 % or so is manageable and allows me to live a normal ish life but I am fortunate that I took early retirement last year. Best wishes
Hi, and I'm sorry to learn you've been diagnosed with PMR.
However, it's great you have found this forum; I've been on it for almost five years, and the information I have got from it has been invaluable - especially in the early days.
Not sure where you live, but, if it's in the UK, then I suggest you try to find a meet up group near to where you are, and join in. There, you can talk to others who have to live with PMR, which I'm sure you would find helpful. You can get contact numbers etc from the pmrgca.uk website. Also, try to get a copy of Kate Gilbert's book "Polymyalgia Rheumatica and Giant Cell Arteritis; a survival guide". It's not expensive and is available via Amazon.
Finally, for now, you have been given good advice about being patient! Most of us with PMR overdid it in the early days, and PMR certainly lets you know - so, plenty of rest and tlc is essential.
PMR is not a lot of fun, but life can be bearable if you act sensibly!!
I will look out for that guide, maybe put it in my Christmas list, I live in Lancashire so will make enquiries to see if there are any groups in my area. Thanks
My nearest help group is roughly 25 miles away in Kendal. I will give myself a little more recovery time then will hopefully feel more like going to join the group. Thank you.
I echo what Dorset Lady and Charlie Boy have said. I started on 15mg Pred and GP reduced me to 10mg after a month. I hadn’t found this site at that point and didn’t know any better.. All the symptoms came back with a vengeance. So she put me back up to 15 mg with instructions to stay there for 4 months! I now know that was not the best advice. Eventually I found this site and a reasonably local support group and learned about the slow tapering methods in response to symptoms not just blood markers. So went from 15 to 13.5, then 12, 11, 10 without problems. Did .5 mg drops below 10.
The plain uncoated pred are available in 5, 2.5 and 1 mg strength which makes it easier to make up the various doses without too much pill cutting!
There’s a lot to take on board when you’re newly diagnosed I agree. I think the most important lesson for me has been the pacing. There are lots of posts for you to read when ready but a good one to google might be “The Spoons Theory” by Christine Miserandino. Can anyone else help Holty with the link for this? I must learn how to
Insert links into my posts on tablet and phone! Can do it ok on the pc with copy and paste but that’s upstairs and I’m
Pacing myself......🤔
Good luck Holty on your journey with PMR and feel free to ask any questions as this is a friendly, knowledgeable and very supportive group.
I have just read The Spoons Theory and it made me feel quite emotional I think one of the hardest things I'm finding at the moment is trying to convince people of the way I feel. People expect you to look or sound ill but nobody can appreciate the pain you are in.
It is very difficult for others to realise that you have a serious illness - you don’t look any different, so they assume everything is okay.
But unfortunately it’s the same with lots of “invisible illnesses” - people just don’t get it! That’s why why the author of the spoons theory wrote it.
If you had a broken arm or leg they would be full of sympathy - because they can then “see” the problem.
We do discuss this quite a lot on here. Many people try and explain it to friends and family initially, but finally give up because they can see it’s not really registering. I think you have to say something along the lines of -
“well I look fine on the outside, but inside I’m struggling with fatigue (not tiredness, but fatigue - huge difference) and joint and muscle pain because my body’s immune system is not working correctly at the moment - and fighting itself”. If they are still interested after that, then show them my introduction.
I think my family only fully understood that I had lost the sight in my right eye (GCA undiagnosed for 18 months) - because they could see (no pun intended) that it made me more clumsy, less confident (initially) - but they never really grasped all the other things that go with GCA. I used to say to them when holiday - you go for a walk around (shops, museums, sights etc) I’ll sit and have a coffee - and they accepted that. TBH now I think they’ve probably forgotten about the eye - and that’s not a problem - so have I - most of the time!
If you can find a local support group nearby, you’ll find they DO understand - and it may help you - PMRpro has given link below - but it’s here again
Totally agree with all of the above I've taken a snap of what you've written and will show it to family and friends. I've looked up my local group which is 24miles away. I'll give it a few weeks until hopefully things are more under control and I feel more like travelling then will get in touch. Thanks for your help today.
I started on 20mg about March 2017 but felt it made me too hyperactive so asked to reduce to 15 which was fine. However after a couple of months the doctor put me down to 10 which was too big a jump. A locum doctor prescribed 2.5 mg tablets for me and I was fine at 12.5 until I overdid things. By then I'd found this forum and learnt about tapering. I asked for some 1mg tablets and was prescribed them over the phone with no problem. I think then I yo-yoed a bit which doesn't help.. A year on I'd slowly dropped to 10 but my ESR values kept climbing.
I've just decided to copy my rough notes for 2018 as it seems easier than trying to summarise!
2018
End Dec start Jan dropped to 12 then started slow drop to 11.
4th Feb down to 11
Feb 28th blood test ok still so can keep reducing
2nd Mar 10 mg
12 Mar blood test ESR 36
16 Mar upped to 13.
11 May blood test ESR still high so stay on 13 for 6 weeks
26th June blood test ESR still high
4th July saw Dr. said to up dose to 15 or even 20 and has referred me to rheumy.
5tb July 15mg
6th August - saw rheumy, confirmed fibro as well as PMR. Start reducing pred by 1 mg per month until 12 then .5mg after.
Started reduction to 14
6th Sep start amitryptaline
9th Sep start taper to 13
30th Sep start taper to 12
24th oct start taper to 11.5
29th Nov start taper to 11
31st Dec start taper to 10.5
Eventually I was down to 10mg again and March 2019 tried a taper to 9.5. It was too soon though and I needed to go back to 10. In hindsight I wasn't great on 10 but wanted to get under! By October this year I was feeling really good and was able to go to 9.5 without any problems. I'm now just at 9 and going to wait a bit to see how I feel before I try another taper.
Lessons I've learnt are to taper slowly, to listen to my body and not to set goals - this is the hardest because I think I still tend to without meaning too!
I'm lucky I have a good GP. I don't think he knows a lot about PMR and acknowledges that but he's happy so far to listen to me and let me manage my own tapering
Hello holly,I’m new to PMR too and in my first week of Pred. My rheumatologist has prescribed 15mg of Pred for 1 month (30 tablets) and then a reduction to 12.5mg.
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