New Sjogren sufferer with Inflammatory Bowel Disease

[ostas12345]

Hello

this is my first post in this forum
You all have my respect for surviving that long with these terrific diseases

this is current list of my diseases:
- partial deafness - I had it since birth, it is not a problem when you wear hearing aids all the time
- inflammatory bowel disease (ulcerative colitis) - it is quite easily containable in my case with 2,5 g of mesalazine 5 pills per day
- Sjogren's syndrome
- dry and inflamed eye - caused by above
- Periodontal disease - possibly caused by dry mouth caused by Sjogren's syndrome. It is no problem when you use special toothpaste all the time
- Primary Sclerosing Cholangitis (PSC) - currently dormant and unactive, if it activates then I am dead, but this disease rarely activates, only in around 5% of people that have it
- Raynaud disease - it is rather benign, just another stupid joke from this universe

To be honest all my other diseases are trivial compared to this dry, inflamed eye with burning sensation

I am a 29 years old ex-programmer from Poland. Recently I had to quit my programming job and suspend my programming activity until my eyes get better
I was born with partial deafness most likely due to genetic predisposition, because some people in my family are deaf too. I think that my deafness is unrelated to my other diseases
From birth to 18 years old I was generally a healthy kid.
All my health problems started when I was 18 years old. I think that I was either genetically programmed to fall for these diseases or I got some kind of food poisoning and my immune system damaged some of my organs.
I had very big pain in my bowels and I was hospitalized for some time
In hospital I was diagnosed with ulcerative colitis. But I am pretty sure that I fell sick to Sjogren's syndrome simultaneously with ulcerative colitis, because since then I had problems with dry eyes shut at night and had to yawn every morning to moisturize my eyes. I recovered after several weeks and left the hospital but since then I had to take pills containing mesalazine 2,5 g per day to keep my bowels in remission, so that I have no bowel symptoms nor pain. So I think that ulcerative colitis is my primary autoimmune disease which caused secondary Sjogren's syndrome, because my schirmer test was negative, above 20 mm and SS-Ro, SS-B, ANA, ANCA, antibody examinations were also negative, only salivary gland biopsy turned out to be positive
Between the age of 18 and the age of 28 I had a very normal life. I felt that my eyes were a bit dry but I didn't feel any burning sensation yet. In that 10 years period of time I was studying and doing easy-going freelancing programming jobs. I started a more serious programming job at a corporation at the age of 27. After several months of working in a corporation, serious problems with my eyes started at age of 28. I was using computers a lot and was staring at LCD monitors for around 7-9 hours every day, much more than before, when I was using computers around 1-4 hours per day. I started to feel this burning sensation in the eyes while using LCD monitors, but I continued abusing my eyes just to not fail tasks at work. Recently I had to quit that job hoping that my eyes would recover, but this burning sensation didn't improve a bit and it remains all the time. I think that LCD monitors can be blamed too for damaging the eyes, but I might write about this more in another posts in this forum

I tried a lot of many artificial tears, ointments, Ikervis (cyclosporine), Xiidra (Lifitegrast), IPL but that didn't quite help me
Now I am going to try out this well touted PROSE lenses or similar, autologous serum, Rituximab, maybe some surgeries
I noticed this weird phenomenon that my eyes feel better outside than inside house so I try to do most of my activities outside of the house

[Rebecca Petris]

Hello and welcome! So glad you've joined us. Wow, that is a lot to deal with! I'm glad you're considering PROSE or sclerals. There are always more things to try.

Couple of questions 1) Humidity level indoors? You mention you feel better outside. 2) Have you tried moisture chamber glasses for improved comfort?

We have some Zoom support groups if you're interested, in fact the young people's one meets tomorrow.
https://www.dryeyefoundation.org/calendar

Kind regards
Rebecca

[ostas12345]

yes, air humidity level must be important, I bought special hygrometer (model 45.2027) from TFA Dostmann company and made some measurements
There is indeed low humidity level in my house, my hygrometer shows 25-30% relative air humidity in my house all the time even in rainy day. When it is raining outside my hygrometer can show 70-95% relative air humidity. But I noticed that in hot, sunny days my hygrometer also shows quite low air humidity 30-40% and oddly my eyes still feel better outside than inside, maybe some of my measurements are incorrect, maybe in rainy days my eyes feel better outside than in sunny days
I bought small and cheap air humidifier and it indeed raises air relative humidity by 5-20% depending on the distance from air humidifier. But oddly my eyes still feel not good indoors even with air humidifier turned on, maybe I will buy bigger and more expensive air humidifier next time

I haven't tried moisture chamber glasses thoroughly yet. I bought cheap moisture chamber glasses from Amazon but they didn't fit my face and sent them back. Do You buy some custom fit moisture chamber glasses by some measurement, customization process? Where can You buy custom fit moisture chamber glasses? Are there such glasses available in Europe (apart from those in the UK)? Do these moisture chamber glasses constantly emit some water and increase air humidity in small space around your eyes? Do I have to refill these moisture chamber glasses with water often?

thanks for the information and link about Zoom meetings for dry eye support, I will join Your meetings soon

[Rebecca Petris]

I tend to notice my eyes getting less comfortable any time my office is less than 35%. But also I see many people on social media where some feel better outside, some inside, where the reasons just aren't very obvious.

Moisture chambers are kind of hard to figure out without trying them on. But sometimes you can email pictures to the company that makes them and they can help. For example if you get Ziena from 7eye in California, they are very helpful.

In Europe, you might want to look up WileyX dealers. Those are more favored for outdoors than indoors. But the other thing you can do for indoors is simple clear plastic safety goggles. I have some cheap ones that I love. I use them while driving sometimes.

Do these moisture chamber glasses constantly emit some water and increase air humidity in small space around your eyes?

The only ones I know of that do that are Eye Eco's Moisture Release Eyewear. https://www.eyeeco.com/sunglasses-.html That's a good product.

[ostas12345]

Thank You very much Madam for the useful information about moisture chamber glasses, I will try to get some custom chamber glasses soon

Could I ask about scleral lenses like PROSE?
If You don't have time to write about it then of course You don't have to, I can search for this information on my own in this forum and maybe other places
are there PROSE lenses available in Europe? are there other very good scleral lenses like Eye Print Pro, LaserFit or Dr Gemoules lenses or similar available in Europe?
How does that insurance covering cost of PROSE lenses work in USA?
is there some kind of similar insurance cost covering of scleral lenses in Europe? (sorry for asking You that if You are from USA)

[Rebecca Petris]

Could I ask about scleral lenses like PROSE?
If You don't have time to write about it then of course You don't have to, I can search for this information on my own in this forum and maybe other places
are there PROSE lenses available in Europe? are there other very good scleral lenses like Eye Print Pro, LaserFit or Dr Gemoules lenses or similar available in Europe?
How does that insurance covering cost of PROSE lenses work in USA?
is there some kind of similar insurance cost covering of scleral lenses in Europe? (sorry for asking You that if You are from USA)

Sure. I am not very knowledgable about resources in Europe (I'm in USA) so If you're on Facebook you might want to join our group My Big Fat Scleral Lens. There are many European members (and some doctors) who can share more.

PROSE is not available in Europe, only US, Canada, India and Japan if I remember right. LaserFit is only in Texas so far as I know. I am sure there are EyePrintPro providers in europe - I would suggest going to their website https://eyeprintpro.com/ and contacting them.

Insurance is very complicated! I don't have any simple answers. Some people get help from insurance, some don't. But you can ask any scleral lens provider for help with this (their office will know more).

[ostas12345]

Thank You very much for the useful information, Madam
ahh, so it seems that LaserFit and Dr Gemoules scleral lenses are the same thing
ok, I will try out EyePrintPro scleral lenses first, then perhaps others in the USA
Thanks for the information, I joined facebook group My Big Fat Scleral Lens recently, I'm going to communicate on that group too

[wissen1]

Hey ostas12345,

can you describe a bit more detailed how your dry eyes and in general dryness of mouth and skin evolved over the years? I also suffer from dry eyes and dry skin for a long time now. Schirmer's test is <5mm but every other Sjoegrens test turned out negative. Doctors advised against a gland biopsy because all the other tests didn't even point in the direction of SS (or any other autoimmune disorder). Oh I also don't have a dry mouth.
Oh btw how are you today?

[ostas12345]

Hello Wissen
thanks for taking interest in this thread
I'm still alive but my eyes haven't recovered anything yet :/ how do Your eyes feel?
I still feel this burning sensation same as year ago, maybe a bit lesser after I quit the job and stopped staring at the LCD monitors
Before the age of 18 I was perfectly healthy except being impaired with deafness, not a big problem when I wear hearing aids
when I was 18 all my diseases started including dry mouth, eyes and skin.
I feel like ulcerative colitis and Sjogren's disease started simultaneously when I had this health attack
I didn't feel this burning sensation of the eyes yet but I felt dryness of the mouth, skin and eyes and needed to yawn every morning because my eyes are stuck shut at night since then.
My overall dryness doesn't become worse or better since 18 except that burning sensation in the eyes started at the age of 28 when I was using LCD monitors too much, I think
Also since 18 I noticed dry skin on hands which started to tear apart making thin rifts from which there were bleedings. So since 18 I need to use special solid soap and apply lotion on my hands every night, because this prevents skin on my hands from tearing apart
My mouth feels dry all the time, especially at nights, it makes speaking a bit more difficult. not a big problem

I am quite confident that I have Sjogren's disease. I'm still waiting to do gland biopsy funded by insurance (long waiting when on polish insurance )
surprisingly my schirmer test was high, above 20 mm, I think my lacrimal glands can produce a lot of tears when stimulated, but generally I think they don't produce much tears because I feel that my eyes are dry, without any moisture layer covering them

I heard some stories of people who also have all negative tests for Sjogren's disease and high schirmer score but gland biopsy ultimately reveals that there indeed is Sjogren's disease. I heard that there is a new more trustworthy test based on abnormal proteins - SJO test, not quite common yet
You can try to do a gland biopsy test just to check out the result

[ostas12345]

Hello Wissen
thanks for taking interest in this thread
I'm still alive but my eyes haven't recovered anything yet :/ how do Your eyes feel?
I still feel this burning sensation same as year ago, maybe a bit lesser after I quit the job and stopped staring at the LCD monitors
Before the age of 18 I was perfectly healthy except being impaired with deafness, not a big problem when I wear hearing aids
when I was 18 all my diseases started including dry mouth, eyes and skin.
I feel like ulcerative colitis and Sjogren's disease started simultaneously when I had this health attack
I didn't feel this burning sensation of the eyes yet but I felt dryness of the mouth, skin and eyes and needed to yawn every morning because my eyes are stuck shut at night since then.
My overall dryness doesn't become worse or better since 18 except that burning sensation in the eyes started at the age of 28 when I was using LCD monitors too much, I think
Also since 18 I noticed dry skin on hands which started to tear apart making thin rifts from which there were bleedings. So since 18 I need to use special solid soap and apply lotion on my hands every night, because this prevents skin on my hands from tearing apart
My mouth feels dry all the time, especially at nights, it makes speaking a bit more difficult. not a big problem

I am quite confident that I have Sjogren's disease. I'm still waiting to do gland biopsy funded by insurance (long waiting when on polish insurance )
surprisingly my schirmer test was high, above 20 mm, I think my lacrimal glands can produce a lot of tears when stimulated, but generally I think they don't produce much tears because I feel that my eyes are dry, without any moisture layer covering them

I heard some stories of people who also have all negative tests for Sjogren's disease and high schirmer score but gland biopsy ultimately reveals that there indeed is Sjogren's disease. I heard that there is a new more trustworthy test based on abnormal proteins - SJO test, not quite common yet
You can try to do a gland biopsy test just to check out the result

[ostas12345]

Hello Wissen
thanks for taking interest in this thread
I'm still alive but my eyes haven't recovered anything yet :/ how do Your eyes feel?
I still feel this burning sensation same as year ago, maybe a bit lesser after I quit the job and stopped staring at the LCD monitors
Before the age of 18 I was perfectly healthy except being impaired with deafness, not a big problem when I wear hearing aids
when I was 18 all my diseases started including dry mouth, eyes and skin.
I feel like ulcerative colitis and Sjogren's disease started simultaneously when I had this health attack
I didn't feel this burning sensation of the eyes yet but I felt dryness of the mouth, skin and eyes and needed to yawn every morning because my eyes are stuck shut at night since then.
My overall dryness doesn't become worse or better since 18 except that burning sensation in the eyes started at the age of 28 when I was using LCD monitors too much, I think
Also since 18 I noticed dry skin on hands which started to tear apart making thin rifts from which there were bleedings. So since 18 I need to use special solid soap and apply lotion on my hands every night, because this prevents skin on my hands from tearing apart
My mouth feels dry all the time, especially at nights, it makes speaking a bit more difficult. not a big problem

I am quite confident that I have Sjogren's disease. I'm still waiting to do gland biopsy funded by insurance (long waiting when on polish insurance )
surprisingly my schirmer test was high, above 20 mm, I think my lacrimal glands can produce a lot of tears when stimulated, but generally I think they don't produce much tears because I feel that my eyes are dry, without any moisture layer covering them

I heard some stories of people who also have all negative tests for Sjogren's disease and high schirmer score but gland biopsy ultimately reveals that there indeed is Sjogren's disease. I heard that there is a new more trustworthy test based on abnormal proteins - SJO test, not quite common yet
You can try to do a gland biopsy test just to check out the result

[ostas12345]

Hello Wissen
thanks for taking interest in this thread
I'm still alive but my eyes haven't recovered anything yet :/ how Do Your eyes feel?
I still feel this burning sensation same as year ago, maybe a bit lesser after I quit the job and stopped staring at the LCD monitors
Before the age of 18 I was perfectly healthy except being impaired with deafness, not a big problem when I wear hearing aids
when I was 18 all my diseases started including dry mouth, eyes and skin.
I feel like ulcerative colitis and Sjogren's disease started simultaneously when I had this health attack
I didn't feel this burning sensation of the eyes yet but I felt dryness of the mouth, skin and eyes and needed to yawn every morning because my eyes are stuck shut at night since then.
My overall dryness doesn't become worse or better since 18 except that burning sensation in the eyes started at the age of 28 when I was using LCD monitors too much, I think
Also since 18 I noticed dry skin on hands which started to tear apart making thin rifts from which there were bleedings. So since 18 I need to use special solid soap and apply lotion on my hands every night, because this prevents skin on my hands from tearing apart
My mouth feels dry all the time, especially at nights, it makes speaking a bit more difficult. not a big problem

I am quite confident that I have Sjogren's disease. I'm still waiting to do gland biopsy funded by insurance (long waiting when on polish insurance )
surprisingly my schirmer test was high, above 20 mm, I think my lacrimal glands can produce a lot of tears when stimulated, but generally I think they don't produce much tears because I feel that my eyes are dry, without any moisture layer covering them

I heard some stories of people who also have all negative tests for Sjogren's disease and high schirmer score but gland biopsy ultimately reveals that there indeed is Sjogren's disease. I heard that there is a new more trustworthy test based on abnormal proteins - SJO test, not quite common yet
You can try to do a gland biopsy test just to check out the result

[ostas12345]

Hello Wissen
thanks for taking interest in this thread
I'm still alive but my eyes haven't recovered anything yet :/ how do Your eyes feel?
I still feel this burning sensation same as year ago, maybe a bit lesser after I quit the job and stopped staring at the LCD monitors
Before the age of 18 I was perfectly healthy except being impaired with deafness, not a big problem when I wear hearing aids
when I was 18 all my diseases started including dry mouth, eyes and skin.
I feel like ulcerative colitis and Sjogren's disease started simultaneously when I had this health attack
I didn't feel this burning sensation of the eyes yet but I felt dryness of the mouth, skin and eyes and needed to yawn every morning because my eyes are stuck shut at night since then.
My overall dryness doesn't become worse or better since 18 except that burning sensation in the eyes started at the age of 28 when I was using LCD monitors too much, I think
Also since 18 I noticed dry skin on hands which started to tear apart making thin rifts from which there were bleedings. So since 18 I need to use special solid soap and apply lotion on my hands every night, because this prevents skin on my hands from tearing apart
My mouth feels dry all the time, especially at nights, it makes speaking a bit more difficult. not a big problem

[ostas12345]

I am quite confident that I have Sjogren's disease. I'm still waiting to do gland biopsy funded by insurance (long waiting when on polish insurance )
surprisingly my schirmer test was high, above 20 mm, I think my lacrimal glands can produce a lot of tears when stimulated, but generally I think they don't produce much tears because I feel that my eyes are dry, without any moisture layer covering them

I heard some stories of people who also have all negative tests for Sjogren's disease and high schirmer score but gland biopsy ultimately reveals that there indeed is Sjogren's disease. I heard that there is a new more trustworthy test based on abnormal proteins - SJO test, not quite common yet
You can try to do a gland biopsy test just to check out the result

[wissen1]

After having few good weeks, my eyes are pretty bad right now again. The worst part about all of this is the desperation. If I only knew something would help at some point... I feel like I tried almost anything at this point that doesn't need a prescription.
Doctors advised against biopsy because it's not without risk. Numbness after the biopsy can be prevelant for a long time and can even be permanent. Also my objective eye tests like staining for example aren't significant enough according to doctors. In general the perception of my symptoms doesn't really match the obecjtive tests most of the time.
I'm going to get my blood retested soon. Maybe something changed over the last 5 years.
Also the doctors said, if I don't experience dry mouth (yet), my oral glands probably aren't affected (yet) anyway.