Research

[Matilda_1922]

I received the information regarding the research I have been recommended.

Read there are 2 arms standard treatment and intensive treatment for those with intermediate disease activity DAS score 4-5.1 and unable to start biologics as DAS not high enough. You will be randomly selected for each arm. The study lasts a year.

From what I understand from the information I've received 'The standard arm continue with current treatment with X-ray of hands and feet at start and end of study to monitor RA damage together with monthly bloods including CRP and ESR (ESR not usually monitored only CRP) at start and end of study monitoring between Rhuematology specialist and GP. The intensive arm start a biologic with closer monitoring with Rhuematology specialist monthly as well as above X-ray and blood test. At the end will go back to current medication before start of study along with nice guidelines.

I have an appointment arranged to discuss and decide whether to take part.

My R elbow, wrists and hands are mainly affected and as a nurse find the symptoms are exacerbated and struggling with wors. as I'm right handed and this side is worse. Also struggling at home with dressing a most household chores.

Just want to know what you guys think I'm in 2 minds and not sure whether to take part.

[helixhelix]

Is the standard treatment arm the same meds that you are currently on (and not hugely happy with) or another standard combination?

From what you have said previously your medical team aren't really proposing any other approach for apart from maybe adding sulphasalazine, have you had any other hints from them? If not, then if you are selected for standard arm you won't really be any worse off. And maybe a bit better as slightly closer monitoring.

But if you are selected for the other arm it could be a real advance for you which you otherwise would 't have access to.

So choice seems to be between staying in the uncomfortable position you are, or a chance of something better. One question I'd want to ask is if I got selected for biologic arm, and it worked brilliantly, would I be allowed to continue after the year is up? Oh, and the reverse question I suppose which is if on the standard arm and I got worse, can I quit the trial and go for something else?

Not an easy choice, good luck with your decision making.

[Matilda_1922 in reply to helixhelix]

Hi Helixhelix

From what I understand it's staying on the treatment I'm already taking.

I can withdraw from the trial at any time without giving a reason.

I have an appointment next week to go through everything and I thought like what you have said if I'm fortunate enough to get the intensive treatment arm and given a biologic. Therefore may sign up to it and if I am not randomly chosen for the intensive treatment then I can withdraw from the trial.

The other concern I have once the trial is over you will need to stop the biologic and go back to your original treatment.

[Matilda_1922 in reply to Matilda_1922]

If I choose not to take part in the trial I need to arrange an appointment for a steroid injection and will increase MXT

[hatshepsut]

I have taken part in a couple of trials, but with both I had the assurance that if any new treatment worked for me, I would be able to stay on it at the end of the trial.

I know that if I was on this trial, put on a biologic which transformed my life, and then had to stop it at the end of the trial I would be totally devastated. I would question the ethics of such a stipulation, and would not be prepared to take such a risk. M x

[Matilda_1922 in reply to hatshepsut]

Thank you for your reply

This is one of my questions if I have a good response to the biologics during the trial will I be able to continue once the trial has finished.

[glenb]

You would be perfect for the Paddison Program. What do you have to lose other than pain and suffering. It's a great big family of people who care and help each other. It doesn't work overnight but as you say nor do the drugs which are ruining your gut for your future life.