EARLY SJOGREN'S - Clinical Trials? - Los Angeles Area

[kristammmkay]

Hi all,

I'm new to the group. My name is Krista. I live in Los Angeles, and I've had noticeable and chronic Sjogren's associated symptoms for about a year now. I just recently received a positive on two of the IGm antibodies on the Early Sjogren's IMMCO blood test. At this point I am sub-clinical as I have tested negative for the traditional tests.

I also have Sleep Apnea, TMJ, mild clinical depression, and chronic Vaginitis pre-existing.

I have a rheumatologist appointment scheduled for January but I'm fighting with my insurance currently for more Rheum Specialist options (La Care Covered Direct Silver 70 HMO).  I am also in the process of trying to get a referral to an eye doc for the Shirmers tear and the Rose Bengal Stain tests but not sure if insurance will cover or how long it will take to get the referral approved.

I'd love to start another post soon to share more about my situation and ask you guys for advice regarding, but for now I am just reaching out to ask you all 2 things-

1-Are any of you are aware of any pending or active CLINICAL TRIALS for early Sjogren's diagnosis in the Los Angeles area? I would be willing to drive a few hours.

2-I would also like to ask all of you with Individual direct HEALTH CARE PLANS (non-Medi-Cal/Medi-Care eligible) your thoughts about your Health Insurance plan or others you have tried. Do you like your health insurance? Do they cover anything extra like acupuncture/chiro/massage? If so I'd LOVE to hear about it. Only have 2 months to decide my health for the next year. EEK!

Also, I just wanted to say I've been obsessively reading this forum for a few weeks now, and the wealth of knowledge and support you all have already provided me is worth applauding.

Thanks in advance!
Krista

[quietdynamics]

Site to check for trials:
https://clinicaltrials.gov/ct2/home

sjogrens trial @ site on global map sample:  https://clinicaltrials.gov/ct2/results/map?term=sjogrens
*If you have not been Dx'd then you can apply under 'healthy individual' to access any workup offered in trial and results. Then share results with your doctors 

The Shimers' test and Rose Bengal stain, if one has symptoms of dry eyes, irritation, grittiness, etc would be normal for a Ophthalmologist or Optician to perform examine for corneal damage. With insurance concerns I would call Dr. office to confirm insurance coverage ( and get free samples of drops before you leave .. as not one type fits all.) Dr. has an opinion of Sjogrens get it in writing to take to Rheum appt.

[SjoDry]

Welcome Krista.

With regard to clinical trials, QD gave you a link to where you can find trials.

I had just mentioned in a different post the other day, that my doctor is starting a new SS trial right now. I have sent him a handful of questions regarding the study details. I do know that one must be sero-positive (that is that you have a positive blood result for SS) and there is other criteria as well. I am trying to find out if he is accepting patients in different cities (not just here locally in Pittsburgh). I don't know if he is utilizing other Sjogren's Syndrome Medical Centers. I would assume (without having the answer yet), that he would have to be.

Insurance is a nightmare for many of us...myself included. I won't go into specifics about my insurance challenges..because it makes me chew the enamel off of my teeth.

One suggestion that I have is that you might wish to contact one of the SS support groups in your area to ask the group facilitator about doctors who are well-versed with regard to
SS. I don't know if they could be of help with your insurance issues. In any event it is always nice to connect to others who are sharing your same journey and a
local group may be near you. Here is the link to check:https://www.sjogrens.org/home/get-connected/support-groups/us-support-groups/california

Hope you are able to get some definitive answers soon.
Take Care.
SjoDry

[kristammmkay]

Thanks QD and SjoDry!

Gonna reply to insurance part in new post. Probably should have posted questions separately in the first place. I'll post link below when it's posted.

On clinical trials.

Quiet Dynamics -

I have checked out the website you mentioned (probably the same day I posted this I ended up at that site and did some searches) and found the following (exclusionary - I'm only looking for trials where clinical pre-diagnosis of SS is not required for participation) -

UCLA-BY INVITATION ONLY - https://clinicaltrials.gov/ct2/show/NCT01807689?term=sjogren%27s&rank=43

LOS ANGELES (general all diseases)- https://clinicaltrials.gov/ct2/show/study/NCT01931644?term=sjogren%27s&rank=144#contacts

MARYLAND-https://clinicaltrials.gov/ct2/show/study/NCT01425892?term=sjogren%27s&rank=31&show_desc=Y#contacts

SOUTH DAKOTA - https://clinicaltrials.gov/ct2/show/study/NCT01793168?term=sjogren%27s&rank=134#contacts

MARYLAND - https://clinicaltrials.gov/ct2/show/study/NCT02327884?term=sjogren%27s&rank=137#contacts

FRANCE! https://clinicaltrials.gov/ct2/show/study/NCT01642706?term=sjogren%27s&rank=135#contacts

I'm mostly just looking at the Los Angeles ones but who knows. Good to have the full picture anyways.
-
This study was completed 2015 it looks like. Hopefully they post the results soon looks like it could be some relevant stuff to early diagnosis. -

https://clinicaltrials.gov/ct2/show/NCT00100204?term=sjogren%27s&rank=106
-
The second Los Angeles link is just to a general disease study. Idk how promising it sounds but definitely gonna take a closer look.

I was of course immediately looking at trying to get "invited" to the UCLA study but so far no luck. I would love to see a Rheumy there but my insurance doesn't cover it so a study would be a dream. I tried emailing UCLA research first and got a reply saying "We do not actually conduct any trials in our office we just work with the pharmaceutical, biotech and medical device manufactures to put the agreements in place to have our faculty conduct the trials.  We are not able to understand your medical condition and the test results you sent on to us.  We will delete that information from our system" Ha so that was helpful. Tried emailing the UCLA Rheumatology department but email address came back undeliverable (rheumresearch@mednet.ucla.edu). Next I tried emailing directly the "Responsible Party" listed on the study (David Wong, DMD, MDSc, University of California, Los Angeles). No response yet. Looks like its being held at the UCLA Dept of Dentistry so I guess my next step is to call and/or show up with my test results and a smile?

Can you guys refer me to anyone living in the Los Angeles or general Cali area that has experience dealing with UCLA?

Can anyone that's participated in clinical trials share their experience?

Thanks
Krista

[Wal]

Hi Krista! I can't really answer any of your questions unfortunately, but I am interested in that early blood test you had. Did you ask your PCP to do one? We have similar symptoms including the TMJ and mild depression. All my blood work has been negative this far also. My eyes have recently gotten worse with dryness and my mouth is better. I think I may need to get that test you mentioned.

[kristammmkay]

Wal,

First of all, please see this separate post about the IMMCO test - https://sjogrensworld.org/index.php?topic=26384.15

Quiet Dynamics also knows alot about this. Maybe you can weigh in QD?

Here's my initial thoughts on the test -
1. It's a new test (2012) that is still not recognized by the majority of the scientific community as conclusive evidence of Sjogrens. It's not part of the current diagnostic criteria for Sjogrens so even if you test positive on this test you will still be deemed "sub-clinical."
2. If you do receive a positive on the test it will at least lead to a Rheumatology specialist referral and more tests will follow.
3. It may be easier / better to try getting other tests first - such as Eye Test- Rose Bengal staining (RBS) & Tear test - Shirmer?s-I test as they are more conclusive if you receive a positive and may be covered easier with insurance.
4. My insurance (LA Care Covered HMO) did cover the blood tests.
5. My partial positive have lead to my doctors and friends/family taking my symptoms more seriously.

Conclusions - if your insurance covers it I'd say go for it. If not will cost a few hundred and might be prudent to try some of the other tests first.

Questions I still have - Specificity of the test? False positives?

Others in the group know more about this than me tho, and there is a lot more information on the other post. Check it out!

Link to IMMCO test info - http://immco.com/sjogrens-syndrome/default.aspx

Good luck!

Krista

[Sweetcheex76]

Hi! I'm in LA as well. I test positive for the pre-Sjogren's tests but not the traditional antibodies. I really wanted to get involved in clinical trials but they all require positive antibodies. I understand why but it's depressing to have such advanced Sjogren's and not be able to participate.