Mtx effectiveness

[Jorobinson]

Hi, I have joined this forum to try and get help and advice for my Mum who has had PMR for around 4 years, although the consultant insists she can't possibly still have it and has recently been told it must be fibromyalgia - but in my humble opinion if when she drops below 4mg prednisolone the symptoms recur the likely hood is that it is PMR. She managed to reduce to 4mg pred but then symptoms recurred so was started reluctantly on Mtx about 14 months ago, she has now managed to get down to 2mg pred but in my opinion has all the symptoms of PMR and I don't really feel the MTX has made any real difference (except a 2mg dose reduction which could be time related).On seeing the consultant last week he was very dismissive and quite vague as to whether mum had PMR or not and just said oh well stop the MTX and increase pred to 5mg if you need to. She is also on amitripyline, gabapentin, cocodamol and recently Butrans patches which in my humble opinion could be reduced by an increase in prednisolone, phew - any advice greatly appreciated we are at our wits end and not sure what to do.

[PMRpro Ambassador]

Anyone who insists someone "can't have PMR after 4 years" doesn't know a lot about it. If only we didn't! The medical literature says about 25% get off pred in 2 years or less and are then at a higher risk of relapse. 50% take up to 4 to 6 years to get off pred and the rest take even longer. I know there are some experts who would dispute these figures - but they certainly reflect what I have seen on 3 different UK forums over the past 5 years or so. I have had PMR for 10 years altogether and no-one disputes that what I have is PMR - it has some add-ons but underlying it all is PMR and the last time I tried a few months ago to get down to 3mg it was still there. I am at 4mg, my doctor is perfectly happy with that.

If the pain can be controlled well at 4 or 5mg without all that other concoction I really don't see WHY she is being denied the basic treatment for PMR on its own and being put at risk of the myriad side effects of the other things, which IMHO are worse than a low dose of pred.

In your place I would discuss things with your GP - if he is happy to provide the pred you don't need the consultant, he is needed for the mtx and possibly the Butrans patches, and I would say he has made it obvious he feels your mother's treatment is beneath him. Amitryptyline and gabapentin are similar and no use in PMR. Cocodamol is no use in PMR and Butrans seems a bit sledgehammer-ish compared to a couple more mgs of pred. Take these two papers with you:

rcpe.ac.uk/sites/default/fi...

bmj.com/content/347/bmj.f69...

They are both aimed at GPs to help them manage PMR. The first shows a reduction scheme spread over 2 years - but also says this should be modified according to the patient's symptoms. Ask the GP if he will cooperate with you all in trying your mother without the other stuff - it can always be started again if it does prove to be helpful - but don't stop everything all at once!

If you use the search box at the top right you can look for a post called "Dead slow and nearly stop reduction". It is the reduction plan I use and it enabled me to get below the 9mg I was stuck at for years (literally!). Others have used it and it has also worked for them without resorting to mtx and is to be looked at by researchers too. A similar plan is in use by a rheumatologist in the north of England.

As a final resort - you could see another consultant. It all depends first of all on your GP. If none of that works - would a private appointment with a real expert be an option for at least a sensible opinion of "it may still be PMR, let's work on that assumption".

[Jorobinson in reply to PMRpro]

Thanks for your advice which confirms my thoughts. It would be nice to have known whether or not the consultant feels he is dealing with PMR or fibromyalgia as he has also referred Mum to the pain clinic who are responsible for all the other poly-pharmacy, which do not appear to be working which I believe confirms PMR, unfortunately Mum has a blind faith in the consultant which I do not share. Fortunately she does have an approachable G.P who I feel may now advise the pred increase if needed, as before he was reluctant to over-ride the consultant. Many thanks for the links, much appreciated - so glad I found this forum

[PMRpro Ambassador in reply to Jorobinson]

There really is no need for a consultant rheumy from the outset if you have an approachable and confident GP. And absolutely - if the poly-pharmacy isn't doing much, why risk the side effects. My pain is all controlled by a low dose of pred. I COULD take less - and the pain would come back but none of that would help me either. The trouble with pain clinics in the UK seems to be they struggle to identify causes - the pain clinic here dealt with the non-PMR problems, mostly with cortisone injections, and then encouraged me to use a high enough dose to manage the rest. I have twinges - but don't we all?

Did I say before - I think there are a lot of patients out there with PMR under a fibromyalgia label. There are overlaps in symptoms and things I had that COULD have been fibro all faded after a few months on pred - fibro doesn't do that.

I'd give you more links but the site won't let me.

[Jorobinson in reply to PMRpro]

Thanks again, it's good to have confirmation of my thoughts from someone who knows first-hand. Hopefully we can move forward and get Mum of this crazy amount of drugs which I fear are putting her at great risk of falls

[PMRpro Ambassador in reply to Jorobinson]

Crackers isn't it - they are terrified of pred as it might give us osteoporosis. My bone density hasn't changed significantly in 5 years of pred, mostly above 10mg/day. But immobility and poly-medication are far higher risk factors for falls and osteoporosis.

[PMRandRA]

My Rheumy says my PMR has extinguished itself. If I had the nerve amd if she wasn't so sweet, I would invite her to spend an hour in my bod! Shewould soon change her mind!

[PMRpro Ambassador in reply to PMRandRA]

And what exactly makes her think that? Got a reliable crystal ball has she?