Hi all,
Had my first meeting today for the clinical trial that I might take part in. The good news for all of us is that the Doc said used to be zero trials for Sjogrens, now they are getting calls from drug companies all of the time that want to do drug trials! Amen to that!!
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I passed the first step and was told words that were music to my ears -- you are a classic case of primary Sjogrens. In seven years no one has so definitively affirmed my state, I nearly broke into tears of gratitude when the research coordinator said those words to me.
FYI hearing those words at this clinic was doubly gratifying, because they totally missed diagnosing me seven years ago. It's a long story, but they really dropped the ball, the research coordinator admitted that and that I clearly could have gotten much further along had that not happened. Again, relief and gratitude on my part.
The drug is related to saliva production. I will go back next week for 2.5 hours of testing then will have to wait for bloodwork results before they can tell me whether I will be approved to participate. I also have to check with my rheumy and neurologist (PCP as well).
Fingers crossed. That said if I don't qualify for this drug study they have a second one in mind. Wish me luck!!
Great news! Good luck!
Good luck! And about time you had an affirmative diagnosis ... So which drug are they testing?
Best of luck to you!! A better drug for saliva production would be the most wonderful thing to me!! My mouth is so dry it really affects how I relate to people as I am always thinking about my doggone mouth (which gets dryer with speaking!). So, yay! And glad you were finally properly diagnosed. :)
Great news for Sjogrenssufferers that targeted drugs are being trialled at last. So hope that this pioneering trial works wonders and maybe we will all benefit from this too. Best of luck and I for one will be watching how you go.