Clinical Trial

[P.Trish]

Well, I had an interesting visit with my Rheumy  (who is 2 hrs away) - he has just moved his practice next to Dr. Daniel Wallace, who wrote the ...Sjogrens Book. I have been feeling worse; my rheumy  asked me to consider participating in a clinical trial - a drug specifically for sjogrens. He is emailing me the info, because Dr Wallace was not 'in' & he has the specifics (it was Fri afternoon). I do not remember the name of the drug! I will know more next week & I will decide within 2 weeks.  I have been wanting to do something to help others, & hopefully,  I will help myself, as well. I  will post more when I have the info. My decision will not be hasty - I plan to consult with a few other drs, as well as friends, family, and you!  Sorry I am being vague, at this point. I will share as this unfolds.

[Styx]

Looking forward to hearing about this!

Styx

[susanep]

I think it is good  you are taking your time.

susanep

[Lesley_x]

Sounds interesting! Looking forward to hearing about it

[Scottietottie]

Sounds interesting and well done you for agreeing to go ahead! 

[Dolly Dimples]

  Good on you girl!
      Will be keeping my fingers crossed that something very good will come out of your efforts Trish.
      It's always heartening to hear that someone somewhere is trying to get to the bottom of this curse.
      Every little helps,  Good luck, and keep us informed,  Dolly X

[mebog]

 
I find it very exciting to know there is a new drug in the making.  Let us know what you decide,  I'll be grateful for the information no matter what you do.  Good Luck!

mebog

[Farmgal]

Trish, Take it carefully but keep us posted on the new med. It is exciting to know there may be something out there for us. 

[CMNK12]

Any news yet? Do you know the name of the drug they are using in the trial? Will you get the drug? Or is it one of those where some get the drug and some get placebo?

Can you tell I am all kinds of excited about sjogren's trials? Good luck and take care. CK

[P.Trish]

The drug is baminercept. Go on the website (and it'll show you which research hospitals are participating)  http://clinicaltrials.gov/ct2/show/NCT01552681

I meet with the doctors on Fri, Mar 8th for a consult. Currently, I have a very bad cold - dang it - and this week is busy, includes a huge Memorial service that I must attend: funeral, reception & dinner at the family's home; about 7 hrs - eeek

I alternate between hopefulness and fear, but if I meet the criteria, it is most likely going to be 'yes'. I am kinda' concerned about how often I must make the 2 hour drive for the treatment. I am hoping to give you an update sometime on Friday

[LonghairWolfe]

It is so brave that you are considering doing this.  I thank you.  I have thought that I would want to participate in a trial and had the lip biopsy done in hopes I would qualify but my ENT said my results were negative.  From the study, it looks like you will be having one done at some point if you are not on the placebo.  I had my done in November and I still have pain and numbness from it.  I understand it can take up to 6 months to heal.  I don't tell you this to scare you but just so you know that I would do it for us too if I could.  And like you, it would be for myself too.  I know I am just so tired of dealing with the symptoms.  They affect every part of my life, making simple things like talking on the phone a monumental task at times. And doing things I use to love like running or taking a step class a huge effort with a long recovery time.  So thank you for what you are about to do for me and others like me. A new medication could be just what the doctor ordered!

[P.Trish]

I did have a lip biopsy, with no complications (about 1 yr ago) It was borderline, but along with my other symptons, the dr dx'd sjogrens. If I fit the other criteria and move forward, I know I will have another biopsy - somewhere down the line. I completely agree with you about being absolutely weary of living with these symptons and the fighter in me really wants do something for all of us. Thanks  for the words of encouragement. Cross your fingers about Friday.

[Styx]

The drug is baminercept.

You lucky dog

If I was going in for a clinical trial, that's one of the drugs I would prefer to try. The putative mechanism of action makes me hopeful that it will be effective in Sjogren's.

Best of luck, and do keep us advised.

Styx

[Styx]

... though you might get the placebo

[CMNK12]

Keeping my fingers crossed for you and hoping you get the drug and NOT the placebo if that is what you decide to do.    Let us know how it goes. CK