Sjogren’s Syndrome – Introduce yourself and meet others

Posted by cmtg @cmtg, Aug 20, 2016

I have been diagnosed with this and I'm in pain most days and would like to have discussions.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 14, 2020

In reply to @elmay "Thanks for the advice. I think I will talk to my doctor about "my diagnosis"." + (show)

@elmay - I had a very rare form of autoimmune GI disease - found that out after years of testing. I started with a known illness- collagenous colitis.With treatment it appeared to go away, but I was feeling miserable most of the time for several years. Biopsies would show random patches of inflammation on and off and in different places. Usually improved on Prednisone and somewhat on Budesonide. Then finally there was an answer - I had severe GI reaction to chemo many years ago- now that was recognized as a trigger for this autoimmune illness. Other conditions that could lead to this are abdominal trauma and gunshot wounds to the abdomen. I then requested to be treated with Imuran - a recommended immunosuppressive. It worked, but side effects of severe infections.

sarcomasurvivor | @sarcomasurvivor | Apr 15, 2020

In reply to @astaingegerdm "@elmay - I had a very rare form of autoimmune GI disease - found that out..." + (show)

Can I ask what was your diagnosis? Unexplained GI problems for 4 years despite repeated testing...and 10 years after intensive chemo.

Becky, Volunteer Mentor | @becsbuddy | Apr 15, 2020

In reply to @astaingegerdm "@becsbuddy - I did not express myself correctly! The dryness of my mouth and little saliva..." + (show)

@astaingegerdm Thank you for clearing up the issue about your teeth! Whew, you had me worried

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 15, 2020

@becsbuddy - sorry! Sometimes I’m not synchronizing thinking and writing.

susanneloss | @susanneloss | Apr 18, 2020

Hello! I'm Susanne, from Florida, and have been diagnosed with Sjogrens disease for six years. It seems to be a very lonely disease, as it's nearly impossible to receive any medical care for it I'm excited to hear, and learn from others in the site!

peach414144 | @peach414144 | Apr 18, 2020

In reply to @susanneloss "Hello! I'm Susanne, from Florida, and have been diagnosed with Sjogrens disease for six years. It..." + (show)

Yes you are correct. I am 82 and am still looking for a doctor who can help. Perhaps this is because there is a small percentage of people who have this disease. So to spend money on research for this disease will not bring in adequate money to compensate for their efforts. ???

patriciao | @patriciao | Apr 18, 2020

In reply to @susanneloss "Hello! I'm Susanne, from Florida, and have been diagnosed with Sjogrens disease for six years. It..." + (show)

Hi Susanne, I’m from central Florida. I was diagnosed about 2 1/2 years ago. Rheumatologist has me on a small dose of prednisone and hydroxychloroquine. I think it helps the fatigue, but I still need to pace myself and not try to do too much. I can’t say that it has done anything for dry eye. I’m using restasis, but it is really expensive. Good luck and I hope you find the medical care you need.

Ingegerd Enscoe, Alumni Mentor | @astaingegerdm | Apr 18, 2020

In reply to @peach414144 "Yes you are correct. I am 82 and am still looking for a doctor who can..." + (show)

@peach414144 - I am so sorry that you really don’t get proper medical help. I find it also depends on where you live- if you have access to rheumatologists with wide experience. Sjogren’s is fairly well known, but not enough physicians are not comfortable dealing with it. It is one of the invisible illnesses. My neighbor has it- I wouldn’t have known by looking at her. Don’t give up looking!

peach414144 | @peach414144 | Apr 19, 2020

In reply to @astaingegerdm "@peach414144 - I am so sorry that you really don’t get proper medical help. I find..." + (show)

Thank you for caring but I have gone to all of the doctors in my county. They are ill equipped emotionally, mentally in caring or compassion. They seem to be stressed out. There are three rheumatalogist's in my county but then again my county seems to be "slow". Mayo in Jacksonville is the fourth (in a different county). It is more "trying" to continue. I have resigned myself that when I win the LARGE lotto I will go to (hopefully) the best elsewhere. Do not worry I am doing well enough.

tracilynn0418 | @tracilynn0418 | Jun 25, 2020

In reply to @jlh658 "I have had Sjogrens for about 15 years. My kidney function is decreasing and now diagnosed..." + (show)

Hey at one time my mom had thought I had this she works in rhemuotology but I never got tested.....just got diagnosed with ckd stage 3 little over a year ago and my left kidney I am wondering if maybe I do have this and it played a part or maybe I am crazy