Methotrexate for PMR?

Hello Hugh, your rheumatologist appears a little quick off the mark with a comment about not being able to reduce successfully. If you've only had diagnosed PMR for a couple of months, really you should have only reduced at the very most once within that time span. So far you've been up and down the doses and never long enough on 1 dose for that dose to really get ahold of the inflammation and keep it under control.

your GP has the right idea re mtx, what's the point of adding another drug that has more side effects and is not an anti inflammatory drug. It us an anti inflammatory sparent, which in my opinion should only be used as a last resort not at the beginning of your recovery journey. But I do believe he attempted to reduce you too quickly.

i would put myself back on the dose that controlled all or near as all the pain and stiffness then reduce very very slowly, 1mgs every 6 weeks. Currently you are yo yoing your dose and if this sort of treatment continues you may find the inflamation will never be brought under control. The inflamation needs to be brought under control with whatever dose of preds Is Required then reduce down slowly and with a small drop in dose.

you say your rheumatologist now suspects RA, well, it's not unheard of for patients to have both, but I believe he'll need to base his diagnosis on something more than pain at your knees, as many of us experienced some sort of pain there. As I say up your dose, then stay on it for 6 weeks then reduce down through the doses by 1mg each time. All the best, christina 

Your symptoms sound very similar to mine - particularly the knees and one shoulder. I was diagnosed with atypical PMR which was changed after two years to sero negative inflammatory arthritis. I have been on methotrexate for 11 weeks and recently reduced from 3mg to 2.5mg of prednisolone.

Although my shoulder was completely better within weeks I'm keeping an open mind as I'm not convinced mtx is working.

If I were you I would want, if possible, a more definitive diagnosis before embarking on mtx as it's use as a steroid-sparing drug is questionable. As a DMARD it has proven benefits in some people with RA.

As for steroid injections - they were the best thing I ever had. They provided instant and blissful relief in both knee and shoulder. I also found the systemic effect meant I felt completely pain and stiffness free for months. Unfortunately though you can't have more than two or three a year as they can damage the joints...

Your GP has caused some of the problem - 40mg is far too high a dose for starting with in PMR. It is the dose used for GCA which needs a bigger hammer to avoid the risk of loss of vision. PMR should respond to 20mg - giving a response of 70% improvement of all symptoms within a short time. By using a much higher dose your GP has muddied the water - LORA would also respond well to a high dose like that. PMR is typically able to produce a minor miracle at 15-20mg.

If what you have is late onset RA then methotrexate would be the first line approach in the UK and some rheumatologists like to use it in PMR in the belief that it can reduce the dose of pred required to get the same effect. The study evidence is mixed: 3 studies, one said it helped, one said it didn't, one didn't know, and all of them small so not very powerful! I personally think that where it has helped in PMR it has been because it was LORA (or another inflammatory arthritis) that was missed in the PMR diagnosis. They can all present in a very similar manner. And you can have both.

PMR is typically on both sides, not necessarily evenly, but it is rare for just one shoulder to be affected. It may be that you have bursitis in the bad shoulder and the other problems are because you are very sensitive to steroid withdrawal now you are at lower doses.

You say it takes until lunchtime to feel better - when are you taking your pred? You should take it as a single dose as early in the morning as possible - many take it at 6am when they wake and settle down for a couple of hours before getting up - by which time the pred has started to work. Others split their dose - taking 2/3 in the morning and the rest in the evening - which helps the morning stiffness. I am on Lodotra - taken at 10pm, releases at 2am and NO MORNING STIFFNESS without having to get up in the middle of the night!

I'm inclined to agree with the others - first get settled at 20mg taken early in the day for a few weeks, not a high dose and reducing quickly, you aren't giving your body a chance to settle anywhere. Then try reducing 1mg at a time once you have got a stable set of symptoms and see what happens. I would also suggest a cortisone injection for the shoulder - and (surprise surprise) I wonder if finding a Bowen therapist might help the shoulder and knee problems - I don't think it is coincidence they are both on the same side.

I don't agree with the rheumy who seems to think the symptoms you described don't happen in PMR - they do and areas near joints that felt bruised were run of the mill for me. Still are occasionally - had one yesterday, gone today! I think he's jumping to a conclusion and it would be good to give the pred a chance using it in what experience shows to be a more effective way. There are not yet any studies on the best way to use pred in PMR - it is hoped one will start in the UK soon and it is intended to use the "Dead slow and nearly stop reduction plan" which I worked out and bang on about on the forums all the time.

Mind you - the weather in Switzerland this year won't be helping either! You have had even more wet than we have on the south side in the Dolomites! Where in Switzerland are you?

Hi Hugh,

I was diagnosed with PMR in the beginning of April, although I had been suffering with pain issues in my shoulders since mid Dec.  Thought they were exercise related and treated with cortisone injection and PT for months.  I have been on 20 mg of pred since then and I agree with the others that gradually at this constant dose the inflammation disappears.  I am just about completely pain free and don't even have much morning stiffness anymore.  I will be seeing my rheumy in July to start my taper and am going to start my slow reduction, hopefully with success.  I don't have as much experience with this disease as most of the others who have suffered for years, but I really think it is necessary to be pro-active and don't let the doctors push you around.  Stick to one dose until symptoms subside and the start the taper.  Good luck.

Thank you so much for all that have replied so wisely and quickly - all of this advice just in one morning! It seems that doctors here in Switzerland are no better than elsewhere, particularly in terms of gradual tapering. The regime suggested by rheumy of reducing 5mg every week (which I never got onto) clearly is not going to work for many people. I am going to go back to 20mg for a while and then follow advice. I will need to go and get some 1mg tablets to do this. I have made appointment to have injection in my shoulder tomorrow and will hold off on the mxt for a while. I have a doctor friend in the UK who told me "don't be martyr" - take the dose that controls your symtoms and don't worry too much about the effects of the Prednisone for the moment". This seems like good advice. On the first visit to Rheumy he said "you are the best doctor for this disease" which would have been good advice if I had had good tapering advice. However, when I saw him last week he said that if I stay on the present dose of 20mg then "you will pay for this later" which was a bit ominous.

The speed of your reduction is quite scary based on my own experience Hugh.  

I was started at 40 mg in March of 2014 and rushed to taper on medical advice by 5 mg every 2 weeks.  I crashed and burned at 25mg and ended up back on 40mg.  Then I absorbed all the excellent advice on this and other forums and began tapering with the no less than 10% rule and adopted one of the recommended reduction schedules.  Most recently the Dead Slow and Nearly Stop.  I recently had to slow from 1 mg to .5 mg drops and I'm currently dropping from 14.5 to 14 mg after 12 months.  I've had a few stalls along the way while travelling, or doing more than usual, but all in all it's going well.

No methotrexate....yet.

I also began Bowen treatments for shoulder, back and hip issues that have surfaced due to my inability to do routine aqua exercises for the past few months.  The pool has been a saving grace for me but has been closed in my local area due to a labour strike.  I'm sure the lack of the aquatic exercise has had quite a negative affect.  Bowen is helping to straighted that out though.

Good luck in finding a treatment plan that works for you.

I have managed my RA for a couple of years now on methotrexate 2.5mg X 5 once a week, plaquenil 200 mg X twice a day.  It has managed my RA  levels successfully without side effects.  Now, recently diagnosed with PMR (shoulders, neck, hips and knees), I seem to be OK with 2 mg. of pred, although having some bleed-through with the shoulder and neck pain (probably also osteo arthritis related) I am headed to the opthalmologist today to rule out possible onset of GCA or something else (!!) with my back-of-eye pain and recurrent floater spot. I live in South Carolina where the searing summer heat is just coming in.  I work in an air conditioned environment but am outside in the garden or woods when home (where we have only night-time bedroom AC).  I don't purposefully sunbathe due to my naturally olive complexion, but notice that the sun I do get makes me more fatigued after exposure.  My father is 96 and in excellent health mentally and physically due to his lifetime love of gardening and physical fitness, with only typical osteo arthritis recently slowing him down somewhat and his heart is typically slowing down.  The doctor delayed giving him a heart monitor until he was 91, seemingly thinking it would be wasted and the surgery would be too taxing ---but Daddy insisted, and has had more years of dancing, gardening, etc...only stopped tennis a few years ago! 

I thought my genetic inheritance would support me, as my 4 siblings are all healthy and active, but can remember the episode of a common viral respiratory infection that triggered the onset of my RA about 5 years ago within a matter of weeks/months. 

Sorry, just rambling here.  I used to live in a little Italian village below the Dolomites and love to read here about your varied lives. Thanks for your insights into our common ailments.