Anyone involved in drug trials for RA?

dibdab

I was hoping to gather some opinions and insights into the pro's and cons of being involved in a drug trial. I have RA which isn't well controlled, and currently take sulphasalazine, Plaquinel and injected methotrexate. Due to problems with care with my original rheumy I got lots of chest infections and now have bronchiectasis (damage to the bronchioles in the lungs) for which I take daily antibiotics. I fought to change rheumy consultants and am now well cared for, but whilst I have been infection free for 2 years now my rheumy is unwilling to move me onto biologics, which he says is where I would be if I didn't have the lung damage.

Yesterday I met a new Clinical nurse manager who has suggested that there may be new drugs being trialled which would be more effective in controlling the RA........she gave me lots of info to read and I am now awaiting a phone call from the drug trials department, but am a bit unsure about whether to get involved. I'd really appreciate your thoughts, and if you have been involved in trials, some insight into what to expect.

Happily the steroid injection she gave me yesterday seems to be kicking in, though I am fiercely hot and very flushed today.

Sorry if this is a bit of a ramble, thanks for reading.

Deb xx

stickywicket

This is a big decision, isn't it? Your current regime isn't exactly wonderful and the permanent antibios even less so but do you go for a hope or not? I really don't know.

I've taken part in several research studies but was only ever once, many years ago, asked about trialling a new med. At the time I was reasonably happy on something or other (probably penicillamine). I had never been used to meds doing much other than making me throw up and the penicillamine didn't. Maybe it wasn't doing much for my inflammation levels but, anyway, I'd have had to come off it for the trial, the kids were young and I couldn't take the risk, especially as I was told that once off my current medication, I couldn't go back to it if the trial one didn't work.

The trouble with trials is that they're precisely that. No-one knows the long term side effects and possibly not even the short term ones.

In your situation I'd want a good, long natter with the rheumatologist before making any decision. I can't believe they'd just routinely put someone with your lung problems on a trial but, if they would, the preliminary findings for the meds must be very promising.

I can only say the obvious – ask if it will mean coming off all your current meds (including the antibios?) and for how long before the trial starts, what will happen if the new drug doesn't work, read the leaflets carefully, share them with your nearest and dearest, check out anything that can be checked, maybe have a natter with your GP (who sees you when the lungs are bad) and then bring all your findings and subsequent questions to the rheumatologist – not the nurse.

barbara12

Hi dibdab.. sorry I cant help,suppose it would be very scary going into the unknown..but like SW says have a chat with your rheumy..let us know what you decide..

Starburst

Hello Deb,

I looked into a trial, called BiP. Not sure if you've heard of it? http://www.kcl.ac.uk/newsevents/news/newsrecords/2013/02-Feb/First-in-human-trial-of-a-new-drug-for-arthritis.aspx I was very close to it but ultimately decided against it because, at the time, I though even the short journey into London would be too hard on me. I was also in the middle of my degree and placement, so didn't want the disruption. I'm a bit gutted now as they've apparently had good results.

It isn't an easy decision. For me, it would depend on the type of trial. There are some unknowns that I wouldn't take e.g. for me, I'd want to be sure about how it could impact on long term fertility. Before I started the process, I was advised to sit down and write my questions, what did I need to know and what could I live with if I didn't know.

The important thing is that you don't feel swayed either way but anyone. It hasn't feel right for you; I'm a great believer in trusting your gut. They will tell you this but you can pull out of trials at any point. So, bear this in mind too.

Let us know what you decide and we'll be with you, of course.

xx

dibdab

Thank you for your thoughts and wise words, I think I probably needed to hear others express what are my own concerns. There are so many "what if......." questions in my head, and I shall be writing a long list before meeting any one concerned. I do rather suspect that with my lung issues there will be a hesitation to involve me in trials, but just for a little while it was nice to think that there might be a glimmer of light in the future.

Thanks for the reference Starburst, I'll read up on that trial. The nurse seemed to be suggesting that the drugs involved are currently in use in America and trials into efficacy are now going on here, but the big question is what happens if I try and fail, my options are incredibly limited, and I guess some good with the existing regime is better than nothing at all. Still plenty of thinking to be done I suspect. I'll let folks know how things go on....if they go on at all!!!

Deb xx

stickywicket

If they're using them in the USA it's probably possible to find out their efficacy online though maybe not the details of how they would be for someone in your situation.

dreamdaisy

I've never trialled a drug but I did take part in the research for creating a new med for controlling hayfever - Beconase to be exact. This was back in the days when I didn't have arthritis (and I needed the money!) but now I don't think I would. It must be tricky for the researchers, they need to know how their med might work but it means those with RA possibly ceding a great deal.

Oooooooh dibdab, it's not an easy one is it? Personally I wouldn't, I think this is one for those who are in the early days and 'only' have RA. DD

stickywicket

dreamdaisy wrote:

never trialled a drug but I did take part in the research for creating a new med for controlling hayfever - Beconase to be exact. This was back in the days when I didn't have arthritis (and I needed the money!)

They PAID you? I feel deprived :pumpkin:

dibdab

Wise words as ever DD.........it might be nice 'only' to have RA, but as my family would say I've always gone for "twoplenty of everything" (to paraphrase a young relative who likes lots of things!). The longer I ponder the less inclined I feel to go down this line, but I'll listen to what they have to say and ask lots of questions then take some advice from the rheumy consultant.

Deb x

toady

Starburst wrote:

I looked into a trial, called BiP. Not sure if you've heard of it? http://www.kcl.ac.uk/newsevents/news/newsrecords/2013/02-Feb/First-in-human-trial-of-a-new-drug-for-arthritis.aspx I was very close to it but ultimately decided against it because, at the time, I though even the short journey into London would be too hard on me. I was also in the middle of my degree and placement, so didn't want the disruption. I'm a bit gutted now as they've apparently had good results.

That's very interesting (sorry to butt in dibdab); my fantasy hope was that this would come into play as an option sooner rather than later, but whenever I check back on it I can find nothing to say it's progressing? My dream scenario was to stay on Enbrel until there was at least a half-reasonable estimate how far into the future this might be, but that's not happened, and unfortunately realism says this will probably only happen far too far into the future to be any help to me personally. Sigh.