help in managing my PMR
Posted , 3 users are following.
Hi
Looking for some advice as feel a bit lost with it all. I was diagnosed with PMR in March 2009 and have been taking prednisolone with no real success as every time i try and cut down the dosage the symptoms get worse so have to raise the dose again, my inflammation levels remain high and work is nearly all but impossible and had so much time off as cant lift my arms, sometimes i cant even get out of bed. My doctor says the steriods should be helping and should be starting to feel better and doesnt know why im not bouncing about, they have advised me to give methrotrexate a go but im not sure has anyone else been on it or can recommend it or can advise me on any ways i can cope day to day which is a massive struggle any help is really appreciated.
Thanks
0 likes, 6 replies
Lizzie_Ellen
Posted
Regards
Lizzie Ellen
Mrs_W
Posted
Lizzie_Ellen
Posted
Kind Regards
Lizzie Ellen
mrs_k
Posted
Someone else will be along to help you, but it looks to me as though it has not been explained to you, that the steroids are not a cure, and neither is the mexthotextrate.
There is no known cause or cure.
The steroids are there to alleviate the symptoms and enable to you to live a reasonable life - mainly pain free.
It seems to me that you were on too fast reduction both times.
Go to www.pmr-gca-northeast.org.uk and under the heading Useful Information read the diagnostic procedures et all published by the British Society of Rheumatologists. This will enable you to understand a little bit more about PMR.
There are also articles on steroids, reduction patterns and our stories. Written by patients for patients, but checked to see if they are correct. These are written with no jargon, just plain English.
Knowledge is power and you need to empower yourself.
Keep on coming back to this site, as someone is sure to have been there, got the T shirt and the DVD
mrs_k
Posted
I also noticed you signed in as 'Guest', please join and take a name, its easier for us to follow the thread and I also meant to say, there are support groups throughout the UK. The locations are on the website.
MrsO-UK_Surrey
Posted
You mention your Doctor in one of your posts but I've just been wondering if you have been referred to a rheumatologist at any stage and are having regular blood tests to ensure that the ESR and CRP blood tests have returned to normal prior to each reduction? If not, and in view of the problems you are having with the steroids failing to reduce the inflammation, then perhaps a rheumatologist would have more experience of PMR to be able to help you. I note that your Dr has recommended Methotrexate which seems to be the drug of choice in those cases where Prednisolone fails to bring about a reduction in the symptoms. As MrsK has already said, neither steroids nor MTX cure the condition but you should certainly experience at least an almost immediate 70%+ reduction in the symptoms shortly after commencing Prednisolone.
There are one or two people who occasionally post on this forum who are taking Methotrexate, one of whom is finding it satisfactory and I know of a gentleman who has been taking a small 5mg daily dose of Prednisolone together with MTX for many years and he is doing very well. Perhaps someone will join in here shortly who will be able to give you their personal experience of this latter medication.
Meanwhile, I have found that a diet full of fresh veggies and fruit and anti-inflammatory foods such as oily fish (good for the Vitamin D content as well), beetroot, garlic, turmeric, but with little sugar and not too many carbohydrates has helped me over the 3+ years that I have been on steroids, commencing at 40mg with a couple of flare-ups along the way necessitating quick bursts back at 10mg and now trying to get from 2 to 1mg.
It could just be that once you reach a stage where the inflammation is under control and the reductions are a little more slowly tapered than previously and not just going straight from one dose to the next that things could improve for you, always remembering that there can be a few days of added discomfort at each reduction whilst the body adapts. I really do hope you get help to find some relief soon because I - and quite a few others on here - remember only too well the days of being unable to lift my arms or get out of bed.
Do keep in touch and very best wishes,
MrsO