New to group..hoping to gather and share lots of information

Hi. Thanks for accepting me into this group. I am so happy to have found a group of people who all have SJS in common. I am excited to gather info and ideas, and I hope to share also.
I was diagnosed 4 years ago after suffering for about 3 years of unbearable symptoms with my throat and eyes, and a desperate search for answers. For some reason, no one could (or would) put all the symptoms together, as an illness, even though I was insisting that most of my symptoms got bad all at the same time, so they had to be related. God bless my family physician who took the time to listen to my frustrations and decided to test me for SJS even though he thought it was a long shot. 3 days later I was making an appt with a rheumatologist and finding out about my illness. Even though was not happy to realize I had this illness, I was happy to know it wasn’t fatal, and that there was finally an answer to all my symptoms. And this realization was, that now some things that I had experienced for many years, like unexplained hoarseness and sore throats with no other symptoms like cold or fever, finally made sense. Finally some relief for the painfully dry eyes and pilocarpine for my dry mouth and throat, and a start to understanding why my salivary glands swelled and hurt a lot. 4 years later, am still trying to learn about this illness, am on my 2nd rheumatologist, and at times get down right frustrated, because treatments have either caused allergic reactions, or side effects I refuse to “live with”, and trying to educate myself on everything from medications to alternative or complimentary treatments. I have many symptoms related to this illness, but it would take all night to write them all down. I had a recent flare in Dec. of 2016 that I still don’t think I have completely recovered from, but am making progress. I truly believe that people learn and grow from our own experiences and those of others. We all owe it to ourselves to try to gather as much info as possible. If we don’t advocate for ourselves, no one is going to do it for us! My feeling is that all SJS sufferers have one thing in common, that we have an illness that is in my experience not understood even by some professionals, and that even though we all have the same overall diagnoses, we have many different symptoms and many common symptoms. It would be easy if this was a “cut and dry” illness, but it’s not and most of us see many doctors, but none of them actually team up and share our info on, so we kind of go blindly into to this and hope for the best outcome. I am looking forward to learning and sharing, finally feel like I found people who truly understand each other! thanks for accepting me.


Welcome!!! I will be dx a year this coming up April. I was sero-negative so I had to have the dreaded lip bx. NEVER AGAIN!!! I had the lip bx 4/12/16 (5 days before my b-day) got the official dx on 4/22/16. I consider myself “lucky” tho. I only suffered about 4 months before my dx. But yet I feel like I am “paying” for such a quick dx.

I feel like the SJS has completely taken over!! I have good days…but it seems like more often than not, something new pops up ALL THE TIME! I am in between Rheumy’s at the moment (waiting to hear from a potential Rheumy in Jonesboro, AR…I live in S.E. Mo) and I am struggling now with dizziness/lightheadedness/vertigo. Numerous times a day, nearly everyday. Along with other bothersome symptoms. So I am feeling a little stressed right now.

Anyway…this board can be a bit slow at times, but the people are great and the support is awesome!!

Looking forward to getting to know you better!

Hi, and welcome to the group! You sound really positive, and I totally agree that it’s best to find out as much as you can, to be able to advocate for yourself. It is a really frustrating illness, and there’s no one size fits all solution, but hopefully you’ll find lots of info and support here!

I am new here and was just diagnosed in April. I am proactive in finding products that will help with my symptoms. If I find something worthwhile I will post it so others can make their own decision to try it. What is puzzling me the most is the lack of coverage from insurance carriers for necessary meds for dry eyes, mouth, nose etc. And what they do cover have pretty bad side affects. That we don’t have a National spokesperson, Television personality televising this disease and working with us on fundraising, awareness, and insurance coverage. I never heard of it until my diagnosis. I am thankful to the people I have connected with the past few days at various blogs as they helped start me on the right track. I now understand the disease better and realize I have an overactive immune system that is creating all my symptoms. Gee I wish there was a fight to find a cure, there are just too many of us suffering. I saw one person write that he has no idea how to fight and appeal his insurance co for coverage of his eye medications, the same ones I use that are not covered. I am 63 working 2 jobs and it is not enough to cover all that I need and use. So I can relate. I know by the end of this year one of these jobs will have to go, as the burning in my body is just too overwhelming to handle all that I am trying to do. I truly wish everyone an easy time, and an easy day and an easy moment where you can find a peace of mind.

It can be really frustrating. Sometimes meds can be partially covered by the manufacturer. Was there something in particular?

Restasis and the new drug with an X for eye dryness. I just cannot imagine what a person would do if they had to go on Medicaid, and needed the gum, lozenges, and ointments, toothpaste, washes for mouth and eyes, and all the over the counters that are not covered. It is costing a fortune, and I need so much to be comfortable.

Thank you so much, I appreciate the insight that others take the time to post. I have learned allot by searching, reading and asking questions these past 2 weeks.

For Restasis, are you eligible for this?

And for Xiidra

A lot of the brand name meds have some sort of coupon or savings program. I’m getting the first year of Breo (for asthma) free, no charge at the pharmacy.

Thank you so, so, so much, so very much. This was very helpful and very sweet of you to do for me. I truly appreciate it. I went through a case of chewing gum in 1 week and lozenges. This is some costly disease. Someone on another site mentioned that her alternative dr uses Comfy Oil to massage on her gums. The alternative dr actually told her she can be cured in 2 yrs. I never heard of this before. I wonder if anyone else did. She said a Herbalist makes it for her Alternative doctor. Have you ever heard of this?

Happy to “meet” you all. So much of what all of you say sounds familiar. I was glad to know what has been wrong with my health for so long has a name. Cruddy that in all the decades of “Sjogrens” not much has been able to fix things.
I realize now that I have probably been fighting this for about a decade, but was just diagnosed this summer. It has been the past 4 to 5 years that it has gotten really bad. I moved away from the area I grew up in to another part of the state. I thought my new town was killing me.
My dry mouth got worse here, my dry eye really bad. Other symptoms started developing. I would have periods of feeling like I was freezing. I would shiver like I was cold, no matter how warmly I was dressed. I had a cold and a cough that lasted 5 months and no remedies I took helped.
Then I got shingles. Which turned out to be a minor blessing. It started in my right eyebrow, spread up my forehead, down my nose and into my right eye. As cases go, I believe mine was one of the more mild cases. Except that it went into my eye. But as it turned out, my eye Dr is the one who suggested I go see a Rheumatologist and be tested for Sjogren’s.
My sister let me know our Mom had Sjogren’s. Wish she hadn’t passed away a couple of years ago. There is so much I would like to ask her.
I feel so alone some days. Most of my family is an hour and a half away. My husband is supportive, but he doesn’t really understand what I am living. I get really depressed. And that was BEFORE my medication.
Having a group of people who know and share will help. But sorry you all have to fight this unseen force as well.
Peace and blessings,

Welcome to you too GrammyF! I hope that knowing you’re not alone in this helps, and that you can get support and info here! Feel free to vent any time…