So, some of you know my story but if you're new here, a brief summary ...
After having symptoms for over 2 years I was finally diagnosed with RA last summer and started mtx in last August. I've been having steroid injections (4 in total now) to keep me going until the mtx started to work, but it hasn't yet and my das score yesterday is now at the very high end of moderate. This in itself was quite a surprise as I thought my RA was mild, so still reeling a bit from that one!!
So having been told about the increase in my das my consultant started to talk through my options, which were as I was expecting, to add another drug, sulfasalasine in this case, to the mtx and see if it that does the job. Usual stuff, takes time to work etc.
Then the consultant went onto to say that as although my bloods are high, they are not very high and because of this it's unlikely I'd ever qualify for biologics. However they are trialing a new drug called Baricitinib which is very similar to Humira and that I would be suitable for the trial, subject to screening of course.
The trial will have 3 study groups and I will be randomly selected to go into 1 that neither I or the doctors will know which it is. The groups will be one group will take the new drug, another will take humira and the last a placebo. All groups will continue to take their mtx. The trial is for 52 weeks and if after 16 weeks there is no improvement, if you are in the placebo group they will switch you to the new drug. In any event they switch you to it at 24 weeks. At the end of the trial period there is the option for an extended trial period of 2 years. I can leave the trial at any point I want to and resume normal meds. All my expenses are paid for.
Side effects appear no worse than anything else we all take. Would be tough if I ended up in the placebo group as I'd have nothing other than the mtx for 16 weeks. This new drug, like humira, is meant to work more quickly than drugs like sulf and mtx.
It's a big commitment in some respects as you have to go to the hospital 18 times during the 52 weeks and often for several hours. It's about a 4 hour round trip for me to the hospital, so it's a whole day thing. I work part time and have 1 day off which I don't want to give up to be going to hospital, but don't think my work will like me taking the time off every 2-4 weeks, maybe there's a compromise there somewhere.
On the plus side, I will be getting very careful monitoring which is reassuring when trying to control your RA instead of having to wait 3-6 months in between appointments.
So, instead of being at my appointment, asking all the right questions etc, this really threw me and I sat there like a bit of an idiot! He definitely said that the drug would be very useful for those like me that fall just short of the biologics criteria. Then I think he said this, but I'm not sure and this is really very crucial, I think he said he doubted that the mtx and the sulf would actually be enough to control my RA. But I'm not sure if I'm now imagining that it's all so blurry!!
I think I'm leaning quite strongly towards going for the trial but wondered if anyone else had been offered this, has been on a drugs trials before or can think of any questions that would be good for me to know. Sorry for the ramble, that was quite helpful putting it all down, and I think I've covered it!!!
Thanks, Rosie x