What research studies (if any) are you involved in - and why did you agree to be involved?

[Tone]

I am fortunate in that my nearest hospital is the Haywood in Stoke-on-Trent. Apart from offering really good, supportive care, they are involved in a number of research programmes. I have agreed to be involved in two of those: the first about co-morbidity and RA, that is, looking at other health problems that accompany/are caused by/worsened by RA.

The second is looking at whether giving statins (drugs that reduce "bad" cholesterol in the blood) can help prevent the heart problems etc that often accompany RA.

I got involved for two main reasons - I want to contribute to improved treatment for people who have RA; and it's a good way to find out lots of interesting stuff.

So - are you involved in any studies, and what prompted you to get involved?

[Tricia-P]

Hi Tone

I like you are lucky to be near a fantastic hospital,mine is Warwick, I have a really understanding Rheumy team we may not get hold of them as quickly as we want or need but that is because the amount of patients they have.

So I wanted to give something back to them and also try and understand the other nasty side effects we may have to have a close encounter with.

I like you are taking part in two trials; one is Trace RA which is the same as you where the University of Machester are looking at statins and the way they may help reduce the chance of heart disease. The other is BRAGGS where the boffins are looking at Genes and will an anti TNF have a better effect on a certain person with a certain Gene strain. This may come to be that a doctor can say thats it you need Humira and it works.

[Tone in reply to Tricia-P]

Hi Tricia - it's a good feeling to be able to trust your hospital - so many people seem to get really poor quality care - a real postcode lottery if ever there was one.

Yes it is the Trace RA trial - the cynic in me says it is simply Merck desperately trying to find a premium application for their expensive statin product - but it also feels important to get involved with developing solutions to the CHD that accompanies RA.

The BRAGGS trial looks interesting - I shall have to look it up on the web. It seems clear there is a significant genetic component to RA, and understanding how that works is bound to lead to better more specific treatment, or even a cure

Very best wishes

Tone

[Sharon56]

Hi Tone yes I am on a trial for statins through my local hospital. Ofcourse at present I dont know if I am on statins or a placebo (hope thats how you spell it).

I just wanted to do my bit for research and hopefully thats what it will do.

[Tone in reply to Sharon56]

Hi Sharon - my GP was intrigued to find out if I was getting the active drug and so tested my cholesterol etc about a month after I started on the trial - and lo and behold, my cholesterol had plummeted and the ratio between "good" and "bad " cholesterol improved. So much for double blind trials! I'd better not tell the research nurse, otherwise they might kick me off the trial for biasing the results.

Here's hoping we and others will benefit from the trial...

Very best wishes

Tone

[Hidden]

Hi Tone

Welcome! Are you into photography by any chance? Yes, I know, odd question!

I have in the past done several trials but not recently. I actually think I am now beyond help so no-one would want to be trialling anything on me! It's always good to be involved and the co-morbidity and RA trial sounds fascinating!

Lyn x

[Tone in reply to Hidden]

Hi Lyn - Yes I am into photography - I now work as a photographer and community artist (as a direct result of being diagnosed with RA), and I am almost certain that we have met, possibly at the NRAS coordinators conference last year?

I'm sure you are not beyond help, but I suspect, like many with RA, you have really been through the mill.

The co-morbidity study is interesting - not least you get a very thorough general medical exam every year (including an ECG) which is quite reassuring.

The statins trial has also been interesting - my GP has assured me that I must be getting the active drug not the placebo - since I started the trial my cholesterol has plummeted, despite me eating just as much cake as before.

It's great to hear from, I shall follow your posts on your blog.

Tone x

[Hidden in reply to Tone]

Hi Tone,

I thought it was you! How lovely to catch up again Really enjoyed the coordinator's training; our group is now up and running with two meetings under our belt. With hindsight perhaps the middle of an exceptionally cold winter was not the best time to start! We are about to make some modifications though, as a result of feedback, which will hopefully encourage more newcomers.

It sounds as though you have an excellent hospital with great facilities and access to trials. I never seem to hear about these things until it's too late to get involved or they're over and done with! C'est la vie!

Good news about the cake .. er, I mean cholesterol! Now it's so low you can eat even more cake! Hmmm .. perhaps that's not the idea!!

Lyn x