I ahve had PMR for nearly 2 years I am 69. For most of the time, I have honestly thought "what's the big deal about this?" as the steroids seem to have coped with my symptoms really well. I started on 20 mgs daily and dropped with few problems to ten. I have been trying to taper down (using the DSNS method) to below ten mgs daily but each time the symptoms return and it is too uncomfortable. Just lately I seem to have so many aches and pains, I decided I was having a flare and went back up to 15 mgs for a few days. It didn't help!
Now, it's almost like I am back at the beginning. I am desperately tired and achey.
What should I do? Try 20 mgs?
I haven't been back to my doctor for a while as I know she wants to try methotrexate. I will do this if I absolutely have to but am nervous about taking another toxic drug.
What do others think?
Written by
Louisa1840
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I agree with your reservations about Methotrexate. My pattern was similar to yours. No real problems until I got below 10 mgs. I got down to 7 mgs where my body seemed happy and got stuck there, stopping and starting a taper for about a year. I have finally managed to get down to 5.5 mgs ( 3 years now) but symptoms seem to be just below the surface. I have also got sluggish Adrenal glands that probably add to the symptom picture.
I would really love to complete the taper without the so called “ steroid sparers”. They are significant drugs in their own right with potentially nasty side effects and they are not proven to be helpful in our conditions.
To be honest it is just pressure from the medical profession that makes me anxious. I was greatly heartened by the Study completed by Eric Matteson, for the Mayo Clinic. It stated that the average duration of PMR was 5.9 years and the Steroid side effects showed no significant difference in incidence between the general populace of the same age group and people on long term steroid treatment at PMR doses. That is apart from cataracts. Even that could be explained by PMR sufferers having more eye examinations.
So that includes the osteoporosis that seems to worry doctors the most.
Are you sure it’s a flare? Sometimes as the pred dose lowers, other long hidden problems resurface. It might be worth trying a regular simple analgesic for a couple of days to see what effect it has on your many aches and pains, before you raise the pred further.
Are you a person that had raised ESR/CRP at the beginning? If so a repeat blood test might be worthwhile, although bear in mind that blood markers can lag behind symptoms, and sometimes they won’t be particularly raised due to the pred. But worth a discussion with your GP.
None of us should have this worry about going to see our doctors, but many of us do. Remember, it is your body, and you are allowed to say a firm NO to any and all treatments that you do not want. I think my argument in your position would be that as you’re not quite sure what your body/‘disease’ is doing at the moment, you don’t want to muddy the waters further by adding other potential symptoms, and that at this moment in time ‘NO!’ but reconsider later when you feel more in control again.
You’re only 2 years in. My 2 year anniversary next month. I also struggled to get below 8mg. I changed my (GR) pred to bedtime rather than morning and that seemed to help me through after several failed attempts. Might have been coincidence, but I definitely feel better with the bedtime dosing. When I was stuck at 8 my rheumi waved the methotrexate flag as well, I declined citing that as I was nearly at a physiological dose I’d rather not! I would have gone on to say that there’s no definitive proof that it lowers your total pred dose.....but I didn’t need to 😉
Another thing I did when stuck at 8 was to visit my chiropractor, who discovered several tight muscles which were causing me pain; and by pressing certain points was able to elicit that exact pain. Not an enjoyable experience, but after a few sessions my muscles began to relax and pains reduced. PMR still there, but all those horrid extras faded, especially my latissimus Doris muscle (as she is fondly known now due to auto correct! should be dorsi.)
Also be aware that your worry over whether to raise pred, accept methotrexate, and your GP reaction are probably stressing you. Muscles love to tense when we’re stressed, so mindfully and consciously think about what your body is doing and try to relax it. Be kind to yourself and have a stress free day.
Hi. And thank you so much for your caring and lengthy reply. I feel a bit embarrassed about posting such a LARGE photo of myself as I thought it would be just one of those little, thumbprint ones that others seem to have but NO!!
Thank you for your sensible comments regarding other aches and pains which may very well be the case. I had lots of osteoarthritis in various places before PMR struck. Also we are just going onto Autumn here in Tasmania (where I am lucky enough to live) with its concomitant cooler,damper weather and low pressure systems, all of which can affect various arthritic conditions. When I return to the damper, English climate my body really flares!!
When l was on 11mgs trying to reduce to 10mg it was always the same, try it, fail, back to 11mg many, many times!.....
I was still working at the time so that eventually was one of the reasons l took early retirement!
I hope you can settle back down again at 10mg & stay there a little while.
In the U.K. a GP cannot prescribe Methotrexate in the first instance, it has to be a Rheumatology Consultant but l don’t know if it’s the same in Australia? It also requires a Chest X-ray, Bloods & you signing a Concent Form.
I do hope you are feeling better & note Soraya mentioned you could try a simple pain killer as it may not all be PMR Pain because the steroids dampen down a lot of our old war wounds/injuries so they start making themselves known again as the Pred is reduced.
It took me over 4 years to get reliably below 10mg. I'm back to 15mg now - but more for cardiac problems than the PMR symptoms.
I think you have to go back to your doctor - but you don't HAVE to take methotrexate, that must be a shared decision. Is this a rheumy or a PCP/GP? Soraya has covered most things - it may not be "just" PMR, there are other things I call "add-ons" that can add to PMR pain, respond to higher doses of pred but return as you reduce. Myofascial pain syndrome is one. I found that Bowen therapy, manual mobilisation of the muscle fascia and trigger points and a couple of other therapies helped a lot - none available on the NHS though I fear!
One in 7 (or thereabouts) diagnoses of PMR are revised at some later stage - and a common sign for that is that it is difficult to reduce the pred dose. You need some medical input to consider whether that is the case for you.
It is one of the options. Other things present looking like PMR and may respond to higher doses of pred at first. Some of us probably have a "different" or more active and long lasting form of PMR that requires more pred, some of us only absorb about half of the oral dose of pred. One may absorb 90% of what they take - 10mg brings the benefit of 9mg-worth. Another absorbs only 50% - only 5mg gets through to work. Obviously that makes a difference.
Im 72 and have been on Prednisolone for just about 2 years and have had trouble tapering. I eventually got down to about 11 just over a year ago and it was too low so ended up on 15 for several months. I then saw a rheumatologist who suggested going down 1mg a month until 11 and then reducing by 0. 5 a month after that. He mentioned the possibility of methotrexate but didn't put it in the letter to my GP. I've now been at 10 for a month and just started tapering to 9.5. I don't have any particular problems with the steroids - I do have osteoporosis now but I might well have had that anyway my mum did and I do far less exercise than she did. I've been encouraged by the Matteson study that someone mentioned above and I don't intend to take methotrexate if I can help It. When I saw the rheumy he diagnosed me with fibromyalgia as well and I'm now taking amitriptyline for that and now Alendronic acid for the osteoporosis so I feel that's quite enough to be going on with!
I've also found some pains that I had before PMR are coming back now, especially myofascial pains in my back and a knee that was sore before I had PMR. I get aches and pains from the fibro too but not so much since taking amitriptyline- it can be quite difficult working out what's what!
Hi Louisa, Also in Oz ,69 and almost two years since diagnosis. I started at 15 and easily reduced to 10. Problems from 10 down so 1/2 mg at a time to 6. Stuck there for six months and since my inflammation factors were up the rheumy put me on methotextrate in January. I haven't had any obvious problems on it and have managed to reduce to 4.5mg now. Doing a slow taper with aim of 1/2 per month. as the cold weather returns I find a few more aches returning but not at the initial level. I've read some advice about steroid withdrawl pain rather than flare so not sure if that was happening to me every time I tried to drop down from 6 to 5.5.
Hi . Do you know how to private message on this forum? I would like to get in touch as it sounds like we have a lot in common geographically and PMR wise!
Hi Ida's mum!! I didnt mean to put up such a BIG photo ( dont want people thinking I am big noting myself). I am an actor so have to have some glamotous gead shots to get work like the odd commercial. I bet you're just LOVELY!!!
Before resorting to methotrexate, ; try again to taper when you feel better. In addition to PMR, we all have fatigue and aches and pains that all humans have, and it becomes hard to know what is what. The problem with getting to 10mg.and less, is that is within the top range of what your own adrenals make,( approx.) , but your adrenals haven't started working yet. It takes perserverance, will and a tough attitude to taper. If you are not feeling well b/c of the taper, take a couple of days, if possible, rest, sleep, read, anything to distract yourself from the unpleasant side affects of tapering. Resume when you feel better, and don't taper more than 2.5 mg. and hold at that point for 3 weeks .
Good luck I am on 4 mg. and hoped to be off by now. But a bad fall downstairs after the New Year set me back.. A lot of doctors tell you that PMR is a 1-2 year disease; not true; it can last up to 6 or 7 years, not evenly; and not in every person.But keep up the good work; it will pay off.
And I feel the same way as you do about Methotrexate. It is in high doses used to treat cancer , but it can also cause cancer in and of itself; lymphoma in particular. Two out of 3 doctors, a 2nd rheumatologist, and a hematologist were dead set against me taking Methotrex; I had only taken 3 doses ( you only take your dose 1x/week), and , after seeing the reactions of these 2 doctors who didn't approve, I stopped and felt no differently.
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