Sjögren’s Syndrome Journey and Support

07/02/2025

Hi everyone, Healthlink Solutions is working with a medical market research company to conduct a research study. We are looking for 10 patient diagnosed with Sjogren’s Syndrome to participate in a research study to gain a better understanding for future needs and experiences of the community.
About the study:
Must be a US Residents
Must be formally diagnosed with Moderate to Severe Sjogren’s Syndrome
Must not be diagnosed with any other autoimmune diseases
Participation for this study will require a 30 minute written homework followed by a 60 minute web-based interview. As a thank you for your time you will receive an honorarium of $200.00.
If this is something you or someone you know might be interested in, please feel free to reach out to Chiarra at Chiarrarohr@healthlinksolution.org or 858-805-5009-call or text is fine (EST). Below is the link to the preliminary questionnaire to see if you are qualified.

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11/01/2024

Fun at work yesterday

10/24/2024

Good morning everyone. Well got most of my blood work back today to start benlysta for my lupus I will say the steroid shot did help with my pain but I doubt want to take those every month. Also my parathyroid is good so that isn’t a reason for my osteoporosis Thata is good too!

10/15/2024

I made a private page and made in more inclusive to all autoimmune disease since we all seem to have multiple please look for

Living with strength:autoimmune support

10/15/2024

Is anyone here taking BENLYSTA for their lupus

10/15/2024

Please look for the new private page that is on the feed

10/13/2024

Look for this page

10/12/2024

The group i made is private! I could not convert this page

10/12/2024

Hello everyone. I created a private group page that you can join you should have received an invite I decided with a diverse group of autoimmune diseases I would make a new name

Living with Strength: Autoimmune Support

https://www.facebook.com/profile.php?id=100084750445929

Sjögren’s support

10/11/2024

Iwill work on making our FB private tonight when I get home from work

10/11/2024

Ok so here was my first symptom of Sjorgrens

10/11/2024

When I started this page I was newly diagnosed with Sjögren’s. Up until then I never heard of it. Prior to that I had hypothyroidism and ITP. I never thought of those as autoimmune diseases After Sjögren’s came lupus and after Lupus came osteoporosis i just found out that my parathyroid hormone is really high so they want to repeat the test. This may be the reason my osteoporosis is so bad at 54. I am overall -3.4 that a cumulative average. I am consistently nutropenic and at times my RBC is almost at transfusion level.

So to this group please share your ups and downs. You can share information about all of your auto immune diseases. Because what I realized is if you have one, most of us have more than one. I don’t have all the answers and if you have a treatment that you’ve tried, something that’s worked, even If it’s a natural remedy please share. We all have the choice to decide what we try. I just want us all to feel comfortable.

Also, if you just need to write and get support about the struggles that you’re having this is what this group is for it’s for sharing, It’s for helping it’s for bonding.