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Clinical Trial Participation Update

Started by SjoGirl, March 19, 2017, 02:34:13 PM

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SjoGirl

March 19, 2017, 02:34:13 PM
Hi all,

I received notice last week that I don't qualify for the research study because my SSA and SSB are currently negative. My readings fluctuate, so I guess I was not surprised. I was disappointed, but understand.

I did learn that my Complement C3 is right at the bottom of the scale, interesting because that's the first time I've had Complements checked.

Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

warmwaters

#1
March 19, 2017, 08:43:54 PM
Aaaah, too bad.  I know you hoped to try this.

Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Scottietottie

#2
March 20, 2017, 09:29:33 AM
Hi  :)

I didn't get into a clinical trial in the UK for the same reason.  :)
http://sjogrensworld.org/   (our home page)
http://www.sjogrensworld.org/chats.htm   (find our chat times here!)
https://kiwiirc.com/client/irc.dal.net  (way to chat + nickname and #Sjogrensworld)


Never do tomorrow what you can put off till the day after tomorrow!

WhatYouSjo

#3
March 21, 2017, 07:27:54 AM
Sorry to hear that SjoGirl. I'm sure SS trials have extra difficulty in recruiting because many of us have either negative or variable SS-A/B results. We really need better diagnostic criteria.
Seronegative male diagnosed 2014. Using generic Plaquenil, Restasis, Xiidra, low-carb diet, moderate exercise, select supplements, helminthic therapy, & LDN. My treatment regimen

My website has posts on research and news.

SjoGirl

#4
March 21, 2017, 05:19:08 PM
The irony is that my SSB varies, it was actually quite high the last time it was tested. Ah well, not to be for me to participate in the study.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.
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