What are people's thoughts about joining in on a clinical trial? There is one opening up in my area and I think I meet all the criteria for it. I'm waiting for a call back. Has anyone ever participated in one? Did it turn into a burden for you?
Liz D.
Go for it, you only stand a chance of improving your condition.
Sjogrens trials are plagued by low enrollment due to patients not meeting requisite criteria, or being so reliant on current medications that they cannot stop them to begin a trial medication where they can assess it's sole effects. So everyone's participation only means meaningful systemic treatments are trialed and made commercially available sooner.
I myself am starting the Lacritin/Lacriprep trial. Currently working an Expanded Access claim for another trial medication, Filgotinib, which has concluded Phase-III RA trials.
Fight hard, advocate for yourself/family, and do what you are comfortable with. Research the medications history in previous studies for starters, and get an idea for it's adverse event profile or possible risks versus reported benefits.
I think it is a question of reading the details of the particular trial. They should lay out what their expectations are, how often you'll have to see them, get bloodwork, or whatever the details of participation are.
If they are comparing a new medicine to a placebo, you may not get any relief from symptoms if you get the placebo. Of course, if you get the new med, you may not have any relief, either, or may have side effects that are difficult.
If you feel you can manage the possible outcomes, let me encourage you to participate. There's a time would I have done so, but I'm in so much pain so much of the time these days, that I'm not willing to risk side effects, and don't have the energy to go anywhere.
Depending on the specifics of the trial, if it were me, I'd probably go for it! You'll of course want to carefully weigh the potential pros and cons and how participation in the trial will affect your lifestyle, but usually by the time a drug or treatment makes it to the clinical trial stage, there is sufficient evidence that there may be a benefit for patients. I'm really hoping to see some stem cell clinical trials in the near future as I believe regenerative medicine holds the greatest promise for "fixing" Sjogren's, but as a chemist, I also firmly believe that better drugs are also on the way for autoimmune conditions. Good luck!