I was diagnosed in hospital in June with PMR, just before I was 60. Was put on 10mg of prednisolone. Over the months there was no change in the pain or fatigue. In September my GP, after speaking with a rheumatologist on the phone, increased it to 15mg. I spoke to GP on the phone a couple of weeks ago. Latest bloods all came back 'normal' but she said she had hoped for an improvement in pain, which hasn't happened. She had referred me to rheumatology and she said we'll wait and see what they say about increasing it further as that's what she thinks is needed.
Well I've increased it myself on Monday. As I only have 5s, I've increased by 2.5mg, taking me up to 17.5mg. It has made such a difference. I haven't told my GP yet, but will next week.
Just wondering what is the best plan to find out what will be the best dose I should be taking. As I only have 5s just now it will be dependent on splitting them. I know it will not be totally accurate but until I speak to my GP it all I've got.
Can I just drop a bit at a time daily, by quartering a 5mg until I find out what is the best dose? Only been at 17.5mg for five days.
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Spittal9
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Have your symptoms completely settled? That would be the guideline to use. Start doses tend to be 20 mg - 15 mg. I was started on 20 mgs and stayed there for about 6 weeks, feeling pretty well. I was glad to discover this site and use the dead slow tapering programmes pinned to the site, never more than 10% of my dose. I got stuck at 7 mgs for a year, still pretty mobile and comfortable. My drops have been half a 1 mg tab, pausing at the first sign of trouble. Take your doctor into your confidence and get a prescription for 1 mg tablets and a pill cutter. I hope this helps you.
PS. Bloods come back normal when we are on Prednisalone, I am astonished that doctors cleave to this tangible thing. Some patients ( 20%) never have abnormal bloods but have all the symptoms. Studies have shown this and they have been posted on here.
Symptoms haven't completely settled but have improved to a point that is much more manageable. Can walk further before legs get sore and back pain, especially in the morning, is much better too.
I will phone my GP next week and speak to her about it, and although she has been really good, I know on here people are so much more knowledgeable about PMR.
I will ask for 1mg tablets, as that will make it so much easier.
Had a DEXA scan last week and the results came back normal for my age, with the start of osteopenia. Taking calcium, vitamin K2 and magnesium. Specialist nurse was happy with that and said to just keep doing what I'm doing, including weight bearing exercise (walking the dog daily).
Now got rheumatology appointment in for December and wondering what I need to be asking when I'm there.
I hope you get a good engaged Rheumatologist. Start jotting things down now, possibly from discussions that arise here. Pleased about your DEXA Scan results, you can improve this score in the ways you already are. My Rheumatologist has given me access to various tests, some pretty immediate eg bloods, X Rays ( which showed the extent of my arthritis) . A CT scan, a test on my Aortic function and now I have a PET scan coming up. They seem to be the golden gate to quick thorough, testing. She/ he will want to know how the disease affects you day to day. It’s tempting to minimise it, so keep a symptom diary to prompt you. Good luck! My Rheumatologist thoroughly approves of this site and the quality of information and advice we get.
This site has been so beneficial to me. The knowledge that is readily shared has been so helpful. After what I learned on here I requested the DEXA scan and also the calcium and vitamin supplements from my GP. I will take a note of things, as you suggested, to take with me. Thanks!
I haven't had an aortic test. I had a DEXA scan which has shown my bone density. I asked my GP to refer me for it so that I could have a baseline going forward. The nurse I saw said I should have been automatically referred for it after I had been on prednisolone for three months. She said if I'm above 7.5mg in a years time I will be referred for another one.
That was way back when my blood pressure was consistently different in each arm. As far as I can recall, I was seated, in front of a screen with a nice man, who ran a wand around my neck and we saw the function on the screen. I may be wrong, I tend to take my brain well away from these tests. I am strolling in a meadow full of wildflowers. ☺️
The hospital made an error, they should have started you on 15mg at the least.
If your pred is enteric coated, you cannot split them at all. So if you have no others, just take the 20mg on day and 15mg next, until this is sorted out. Take them as soon after 2am as you can, a Yoghurt, Cup of Tea and/or slice of bread. Never on an empty stomach, then go back to sleep and give them time to work before you start the next day.
Calcium, do not take it at the same time as your pred. Rule is Pred for Breakfast Calcium for Lunch.
academic.oup.com/rheumatolo... this link will take you to the British Society of Rheumatologists Guidelines on the Diagnosis and Treatment of PMR. Well worth a read and you can download them. Knowledge is Power.
GP is surprised I was only stated on 10 mg. My tablets are not coated, so able to split but as I only have 5s right now it's not that accurate under 2.5mg. So halving them to give me an extra 2.5mg, taking me up to 17.5mg. I usually take them about 7am when I get up. Then take calcium at lunch time. Thanks for the link. I'll have a read through it. Knowledge is definitely power!
Accuracy is immaterial - all that matters is that the starting dose is enough and that the tapering doses are less than the previous dose. If you cut a tablet, then if one day is just under a half tablet, the next day will be just over a half. The body won;t notice that much difference - and it was less than a whole.
The whole point is that - unlike your initial effort - you start at a dose that is well above what you will probably need. You get the symptoms under control with that and THEN you titrate that dose to find the best dose for YOU. Not for me, or Jane or YBB or anyone else on the forum, for you.
To do that you reduce the dose slowly until you fond the dose at which the symptoms start to appear again - and you don't mess about, you go straight back to the previous dose that worked well for a month. Stick at 17.5mg for a couple of weeks - and then start to reduce by 1mg at a time and staying at that dose for at least a couple of weeks.
Your problems so far are because you weren't given enough to start with and that was always a possibility by using only 10mg. The 2015 recommendation warn against using too low a dose - all that pred you have had has been something of a waste, no benefit to balance the downsides of pred.
Why on earth don't they THINK and look it up if they don't really know? Nowhere does it suggest using 10mg for a PMR diagnosis.
Thanks for this! My GP has always thought 10 mg was too low but seemed reluctant to increase it as I hadn't seen the rheumatologist. Now that I am much further down the line, and thanks to this site and all the information I have been able to gather, I am much more confident about PMR. Hopefully my GP will go along with the above. She's aware that I'm on here and appears to listen to what I suggest, so should be able to get 1mg tablets no problem I imagine.
I haven't but I'm guessing she's read something as when she phoned me when I was in hospital in June and told her I was on 10mg, she said that was below the recommended dose. She's always commented since then that it was low until she increased it in September to 15mg. I'll phone her on Monday and I'll print it off and leave a copy for her.
Sounds as if you might be better with your GP than with the rheumy. Which hospital are you under? Are in touch with the Scottish charity? (sorry if I have asked that before)
As I've been referred I will attend the appointment but to be honest I don't know what I'll find out from them that I can't find on here and then go to my GP about. My GP suspected PMR when I saw her in the summer and she got my blood results. She then sent me to hospital. She knew tests, scans, etc etc would be done and results would be back quickly.
I'll be attending Garnavel General. Luckily for me I ended up there in the summer in a ward split between general and rheumatology patients. I've been along to the Glasgow Support Group, who were very welcoming and it has also been very helpful.
I started at 20mg and stayed there 3 weeks and dropped to 15mg where I stayed 5 weeks. In the beginning my (former) rheumy would only give me 5mg uncoated pills, and their direction to drop from 15 down to 10 in one go, resulted in a flare and I ended up back at 15 for 6 weeks.
Next time I cut 5mg uncoated tablets into 4 essentially dropping 1.25mg per drop, and no further issues till I got down to 9mg. By then my GP took over my care and prescribed 1mg tablets.
As others have mentioned, your starting dose was not enough to deal with the inflammation. Hope you journey forward is better....and remember, taper SLOWLY. I stay at least one month at each new lower dose. Plenty of tapering plans on here to help out.
They start you on a higher dose 20 mg in my case and then the slow taper of 1 mg a month as prescribed by my Rheumatologist .... it works like a charm so far..,I will be on for another year as I am now at 12 but feeling very well
I'm glad to hear you're feeling so well. With all I know now, had I been put on a higher dose I would most likely now be on a lower dose. I also know there's no quick fix after all I've learned on here.
20mg may have been better but when you get higher than 25mg, and some have started at 40mg, research suggests its one of the main factors in relapse;that and reducing too quickly.
I was diagnosed 9 years ago, gp immediately put me on 20mg prednisolone worked wonderfully. I was of work 3months gradually reduced from 20mg to 17.5mg over 3months then down to 15mg again for a few months . You can get pred in 5mg red 2.1/2 mg brown.both coated also 1mg white not coated.
I have been able to maintain control of syptoms on low dose 4/5mg.but have been on oral pred for too long,so consultant has given me 2 steriod injections one August and another November unfortunately neither have lasted for more than 5weeks so now consultant wants me to try Methatrxate not looking forward to that.
Sorry to hear the injections haven't lasted too long. I've read about some of the side effects of Methotrexate. Fingers crossed it is successful for you. When will you start that treatment?
The fact you've found the right dose that eases the pain and stiffness is good and from my short experience of this disease is stay on it for a couple of weeks at least.
I'm 52 diagnosed in May. < ! >
Very young for PMR.
I started on 25mg, very high esr and then went down rapidly because I hate prednisolone, to 11mg. I had a big flare and back up to 17 for a few weeks, then reduced 0.5-1.0mg each week and now holding at 14.
Its not an exact science.
I won't reduce again until week 1 December. Pain in the a#&e but slowly does it.
The new NICE recommendations published this earlier this year have reduced the age to 40yrs onwards. I was 55 at diagnosis having had symptoms for 1 to 2 years. We have some people in their 40s.
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