Amitriptyline
Posted , 6 users are following.
I've had PMR for 3 years and am currently at 6.5 mg pred. The diagnosis was spot on and correct. There is no doubt I've got it. I've never been lower then 6.5mg. I have no side effects. I've had flares which I believe were induced by too much exercise. I'm reducing 0.5 mg per month and for the first time I'm quite confident the "polly" as I like to call this evil condition is under control.
I've just seen a Professor of Rheumatology, I'm in the UK. He says its not PMR. PMR never lasts more than 2 years. We all know this is wrong. I've had numerous MRI scans and the pain is not from any spinal problems. He tried to frighten me that I was at risk of muscle myopathy, but I have no tiredness and feel reasonably fit.
He want me to go onto amiltriptyline for a month. Continue on it while I reduce steroids by I mg per month and manage the pain with cocodamol (codeine and paracetamol). I would also go to pain management classes. I will be seeing one of his staff to organise all this.
I have some questions
Eileen. You're the source of all PMR knowledge. Can you give me reference for the stats on how long PMR lasts. I remember you quoting something like 70% of people are off pred after 4 years. I'd like to have the document to show at my next appointment
Has anybody had experience of amyltriptyline in their treatment? How did you get on?
Happy New Year Everyone!
0 likes, 10 replies
EileenH andypolly
Posted
https://www.medpagetoday.com/rheumatology/generalrheumatology/66912
https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings
These are links to the two articles about Eric Matteson's study which includes figures on duration of pred management for PMR. Matteson is a world name in PMR - which I doubt your current little friend is. Which hospital is this at?
Amitriptyline is for nerve pain - PMR is NOT nerve pain. Painkillers almost never help with PMR either.
I could cry. God help us - it is bad enough fighting for what we need without Professors of Rheumatology disseminating fake news...
andypolly EileenH
Posted
What he's saying is that my pain is not PMR it is something else. He says PMR does not last more than 2 years. . My pain which he says is atypical for PMR is probably muscle myopathy caused by the steroids. So forget the steroids, take a muscle relaxant, amyltriptylene, and manage the pain with cocodamol and amytltriptylene. Reduce steroids over 6 months and I'm sorted. Bingo!
Like you I'm very sceptical. I'm seeing my GP in one hours time. He has been very understanding and let me manage my PMR myself. So I think he'll agree that it's a bad idea. I'll show him the 2 articles. The hospital is the Nuffield Orthopaedic in Oxford.
EileenH andypolly
Posted
And what I'M saying is - he's out of step with some very well known people in the field - who are also professors of rheumatology.
What is atypical for PMR? Come to that - what is typical? Generally when a patient describes their pain that someone claims is "atypical" on the forums there are a load of others, all with a PMR diagnosis, who say it is where they have pain.
But I think I have the answer - there have been people in the Oxford area who have had similar problems with a rheumatologist who disagrees with the rest of us. When one person is intransigent, so adamant they are right and thousands of others are wrong I think it says more about them than it does about us!!
If I were in Oxford and needed a broadminded rheumy who thinks not just spouts I'd ask to be referred to Rod Hughes at St Peters in Chertsey. NHS or private. It might NOT be PMR - but, as usual, not for the criteria HE is quoting.
andypolly EileenH
Posted
My GP was very happy for me to continue as I am, slowly reducing from 6.5 mg. I showed him the article. He was reluctant to say what you and I think about what the professor was proposing. I think it's probably top down pressure telling medics: this is what I think so you do to. I've seen consultants, and numerous medics, physios who will all say the same. PMR only lasts 2 years.
EileenH andypolly
Posted
I spoke to a rehab rheumy at our hospital this morning while seeing him for something else - who also said "2 years" so I quoted Matteson's work and he very quickly changed his tune to "lots of atypical cases" and sort of got on to the concept of differing durations, and agreed with the idea of different forms of PMR. The knowledge about PMR is broadening, not least due to the forums and the pooled experiences all in one place. I think it is becoming more common, I think it is affecting younger people (or maybe be better recognised earlier) and I think it may even be more heterogenous. An education crusade is required,
EileenH
Posted
PS - good for your GP though, encourage him 😉
andypolly EileenH
Posted
The locum who diagnosed me 3 years ago was brilliant. Saw locum day 1. He thought PMR. Blood samples taken the same day. Results next day. Saw same locum the day after and was on steroids the day after that. NHS at its best. And my GP has just let me manage the steroid reduction myself. He's been excellent. Then the the professor comes into the story!
Elizamc andypolly
Posted
Isn't it disconcerting when we chug along one track and then get shunted - or threatened - too another?!
I've been on amytriptaline for several years now for chronic back pain and it has manages it very well. I couldn't say if it's helped the PMR or not as I was on it before my diagnosis/onset of PMR.
andypolly Elizamc
Posted
I hope you're doing well with your PMR and it's receding?
Elizamc andypolly
Posted
Thank you Andypolly; I've not had a straightforward journey with my PMR and prednisone as I have fairly severe asthma which upsets the applecart. I've had numerous increases (followed by decreases) in Prednisone doses over the last year due too asthma flares and chest infections. And the immunosuppressant effects of prednisone led to me having seven chest infections last year. It was a misearable year healthwise, I also had shingles twice and treatment for three dvt's. I'm hoping for better health this year and am now under the care of a pulmonary consultant who is checking out my lungs (and heart) very thoroughly! One thing he's found is that I have a low immunity that needs treating, I see him in a couple if weeks to discuss.
Keep us posted on how you get on? My very best wishes too you!