help in managing my PMR

Hi Mrs W. So sorry to hear you're still suffering after all this time. What dose of Prednisolone did you start on and what are you on now? How quickly did you try to reduce? I'm just asking these questions because it will help with advice and suggestions (and be assured, you will get plenty -its a wonderful site). I'm just off on holiday but I'm sure if you can answer these questions there will be lots of very expert PMR sufferers on this site very willing to help.

Regards

Lizzie Ellen

Thank you so much for your reply, this site is truely wonderful my daughter found it and im sure it will help and hopefully i can help people too. In answer to your questions i started on 20mg last march and managed to get down to 10mg last oct then had to go back up to 20mg for 2weeks in dec then have been reducing dose and now at 10mg the lowest i got too was 7.5 but was soon back up as wasnt able to maintain it. Enjoy your holiday

Hi Mrs W. What would we do without our daughters :diva: ! My Consultant was anxious to start reducing my Prednisolone as soon as possible, but wouldn't do so until I was out of pain and my ESR and CRP results started to go down. I am now reducing at a very, very slow rate but I've been very lucky as the pain has not returned. I'm now down to 7/8mgs. Were you still in pain when you started to reduce or did it start again as you went down a dose? I ask because I wonder if maybe you reduced too quickly. We're all so different that its difficult to compare experiences. As you can see, so far I've been pretty 'text book' with my PMR but I know a lot of people on this site will have had the same experience as you and will be able to help much more than I can. I've learnt so much since I was diagnosed in September 2009 and you can bet your life, someone, somewhere will have some really sound information for you soon . Thanks for the holiday wishes - I'm driving 1,500 miles - daft or what :bus: (no, I'm not going in a bus, but couldn't find a car emoticon!!).

Kind Regards

Lizzie Ellen

MrsW

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

Sorry

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.

Hello Mrs W and I'm so sorry to hear of yet another new member of our \"club\"!

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