Has someone heard of a similar case? Biopsy doesn't lie, right?...

[Sharon]

Those of us that are having an especially difficult time have more of a systemic SJS.
As long as it remains only sicca symptoms you can live a fine life.
As others have written, you'll find ways to deal with the dryness trough trial and error.

[MAT51]

Hello guys.

Thanks quietdynamics, jkcc2323 and Sharon for the suggestions. I'm already doing 200mg ubiquinol/day.

Hi snoweye, i'm from Lisbon.

I do still think my life is over, yes. I have no quality of life now. I don't have fun anymore. I don't smile anymore. My head feels empty. Treatment is BS and we are left to try 100+ supplements, 100+ drops, 100+ foods etc.

I always had a quiet healthy diet (eating fruish, fish, etc) so... i don't know.

I just don't find the reasons to be such a rare case.

My heart breaks when i see women between 40-60 complaining about this. If they can't handle it nicely, how is a 22 yo male suppose to...? I don't have nothing yet. I was on the process of building life... We only have one life and now i'll have to live with this disease (knowing that probably it will get worse...). I'm going to lose the best years of my life due to this (at least).

We all ask "why me?" right, i guess i'm just more.

Are there more young people living with this out there in the forum? : (

Have a nice weekend guys,
Andre

Hello. Firstly I'm so sorry you are going through all this. I have a son your age and another who is 20 and a 25 year old son too. All have shades of autoimmunity which they all studiously ignore but I notice - although I say nothing to them unless they specifically ask. At their age I was a mess - always shedding hair, suffering UTIs and had terribly dry eyes and really bad teeth. I'm fairly sure I had Sjögren's but was only officially diagnosed last year at 53 years old. It took aip biopsy, a misdiagnosis of RA and a positive ANA to confirm Sjögren's. All five salivary glands removed had well over 50 foci.

I know that I'm a classic Sjogi person - but I can trace my dry eyes and mouth and digestive issues right back to when I was a young kid - which by current medical thinking would be rare. I firmly believe that Sjögren's is far more common in younger people of both sexes than any immunologists or rheumatolgists have yet acknowledged. I think the stats we are given now are very limiting - how can they know the true stats if they aren't even for looking for this disease in men of your age?

Someone in the U.K, where I live, was on the radio the other day. She was a young Olympic judo player until she started having terrible abdominal pain and vomiting abc was unable to keep food down - collapsed and was hospitalised and there, by sheer chance, they found she had positive antibodies for Sjögren's. Since then she's developed the Sicca symptoms too. She takes no drugs because she still hopes to be able to return to being a sports woman - although not judo. She has found that, by keeping to a very strict vegan diet, she can manage her GI symptoms reasonably well but the fatigue and Sicca are progressing. I think she's around your age.

It is my observation that these AI diseases manifest in many different ways over a lifetime and you should never think that you're doomed to one awful set of symptoms. Sjögren's is a disease, just like Lupus, which has multiple presentations and each person's autoimmune disease is uniquely their own. Any chemical or formative event can trigger autoimmunity so if you feel yours was triggered by Roacutane then you are probably right. I'm sure your eyes will settle down over time. I personally have a very MS-like presentation now but previously it was misdiagnosed and treated as RA. Keep an eye on your thyroid bloods too as if they are or become out of whack then taking thyroid replacement hormones might help a lot.

[snoweye]

I do still think my life is over, yes. I have no quality of life now. I don't have fun anymore. I don't smile anymore. My head feels empty. Treatment is BS and we are left to try 100+ supplements, 100+ drops, 100+ foods etc.

I always had a quiet healthy diet (eating fruish, fish, etc) so... i don't know.

I know it may seem like it right now but it is a common way of reacting to a chronic illness and most of us soon start to see the positive. I also felt very frustrated because like you I had a very healthy lifestyle. Looking back now, what led me to this lifestyle was the fact that I haven't been feeling fully healthy for around a decade.

A few months after my SS symptoms started I became severely depressed. I felt so ill, so alone and so powerless. I now realize that despite most of my family being completely useless I am neither as alone or as powerless as I thought.

Things that helped me move forward were as follows:

Persistent effort of some friends to contact me.

I read about a lady who was struggling against terminal cancer for 15 years and with some new drugs managed to shrink her tumor.

Sadly two acquaintances in my industry died. One unexpectedly and another who has been ill for a long time. Although in comparison to the majority of people we may be very unlucky, everything is relative and in comparison to some it could be even worse. I also thought about a guy I knew in high school who died from a brain tumor when he was a teenager. He didn't even have a chance.

More relevant to us suffering from AI conditions, there is substantial progress being made every month in understanding and treatment. Just search on Google News for autoimmune and you will see. There are many avenues for exploration and it is exciting to be a pioneer.

I just owed it to my late father to fight this. He was blessed with good health for most of his life but managed to overcome substantial adversity.

One night I was sitting out on the terrace listening to music and the above thoughts swirled in my head. I decided that it was too soon to give up.

This is a personal way of coping but also now I keep my expectations for the future very low while keeping in mind a certain probability of regaining my health. This forces me to do certain things today instead of waiting for the future when my ability to do anything may be severely compromised.

Even in the worse case scenario, I will go down fighting.

If you ever want to talk let me know.

[grlds95]

Andre,
I'm not young, but I have had symptoms since I was in my 20's.  I can assure you that your life is not over.  You will find ways to help with dryness issues.

I hope the cyclosporin drops help your eyes.  It began helping mine after just a few weeks.  You need to find a good over the counter eye drop to use throughout the day (I use Systane Ultra) in addition to using the cyclosporin drops.  Keeping your eyes moist will help a lot.  As was mentioned by someone else, overnight gels are available without a prescription. 

There is also the possibility of having your eye ducts plugged or permanently sealed to retain moisture in your eyes.  (Your eye doctor may suggest this if your eyes are extremely dry.)

Hi Cheryl. I am sorry your symptoms started in such an early age, like mine ... I'm on cyclosporin 1.5 months, and it's not helping so far. Yes, throughout the day I use some non-preservative drops. But is does not help me a lot, maybe I need a more lipidic type of drops (I normally use thealoz duo). I think I will start with overnight gels soon, because sometimes I wake up with intense burning in my eyes. I will try temporary plugs soo.

Thank you for your words and attention.

Exactly what I suspected:

AVELOX .. a fluoroquinolone .. They can wreak havoc on our bodies. Make sure you never take another one because you are very likely not a candidate for that line of antibiotics.

Other drugs to avoid (fluoroquinolones) .. Cipro, Levaquin, and Factive.

Hi jazzlover. Unfortunately it was what put me like this, I agree . There are very opinions on what causes AI and Sjogren's, but it my case is clear as water. I never had problems as a kid (just acne) an was ill very few times. The genetics factor is not strong too, there is no known case of AI in my family. Other thing I sometimes think is... Is Sjogren's caused by genetics equal to sjogren's caused by hormones equal to sjogren's caused by an antibiotic? I think the answer is unknown, and this is the sort of thing that scares me, it seems that so few is known about this disease... Even there has to be a reason for people to be seronegative in so many ways and still have marked symptoms... Until they sort things out and understand tis better, we are all going to be just surviving instead of living... Sad but true.

Hi Sharon. I don't know what the future holds. I don't know if it will remain "only" sicca symptoms. What I can say is that I'm having a really bad time with this presentation of the disease. My symptoms came from night to day and in an aggressive way, what is very scary. It seems everything can pop up as quick in the future. Let's see what's going to happen..

[grlds95]

(continuation...)

Hi MAT51.

I agree more young people have than the doctors think. In my case, if I wasn't persistent, I was now being treated for psychological disorders. The first thing they though of what was going on with me... Depression. And I just thought to my self "I just want to feel good and able to do all the things I did. I just want to be happy and stop feeling the pain in my eyes. But can they be right, can it be depression?". Well... Of course it was not. It was something bigger happening. I'm sorry for the thousands of people (and young people) which are dismissed based on their age. Having that said, I don't think many people have this. Majority of people doesn't even know what's dry eye.

Is the young judo player Emma Fletcher? I heard about her case, I think she is 30's now. I would like to talk to her, yes...

I agree with the different manifestations of AI. I now have the Sicca symptoms and it is already devastating to me, I'm not sure how I will deal with the rest if it comes... If i'm not dealing well at all right now.


Hi snoweye.

I still can't think of this as chronic. That would destroy all my dreams and ambitions. I just hope in the future some major discovery is done, although being skeptical about it at the same time. Even if a cure is not found... Most AI have meds that help a lot and people somehow live normal lives (I think). I think Sjogren's and MS are examples where treatment lacks in big scale.

In your case, what do you think triggered it?.. I just think my case is just too ridiculous, and I think that is not just about "being me". It is just such a rare rare event. I'm a guy and I'm only 22... How could this happened... Nobody gives me answers. It just can be the Avelox. Due to that I deal with major regret everyday. As a kid I didn't know the power of such strong antibiotic... I everyday think about how could a doctor ruin my life single handedly and so easily... Avelox sould be a last resource and not a first line treatment... But he just prescribed it for a minor pharyngitis with some cough. How are these kind of things allowed..?

Regarding depression, I think mine will now go hand to hand with the course of the disease. I was highly depressed a few months ago, and stayed like that 3 or 4 months. I couldn't sleep well (would wake up 3/4 times a night), and would just drag me for work and back home. I now can sleep well. Overall I'm still highly depressed, but it is just the reflection of I truly feel about this. I too feel very alone and powerless. I was very independent before this, so I'm particularly having a hard time. Despite my family trying to help how they can, I think they are really useless and I feel alone and ill every day (they think they understand my pain, but they don't).

Keeping my expectations for the future very low is something that's quite hard for me yet. I just began working 1 year ago, this is very sad. That would be giving up all my ambitions and my future. But I guess someday I will have to do it... I admire your strengh of will and capability to fight. I sometimes just don't think this is my war... Yet. In the future i will have to face it better, I guess. Maybe someday we can talk.


Andre

[snoweye]

Andre, what I meant is that it is chronic until a cure is found. And there is every possibility that this will happen. I just don't want to get my hopes up so if I assume the worst case scenario it helps me me to cope with whatever comes. I don't recommend this way of thinking to everybody but it works for me.

I have heard of several other people having adverse reactions to some antibiotics including one woman who developed SS symptoms. She made another post saying eventually things went back to normal. However I don't know if this was temporary remission or a permanent recovery. Have you tried talking to other people or finding groups of "antibiotic victims"? Perhaps you might find some useful information there.

There is still the possibility in seronegative cases like us we don't actually have an AI disease. For example it could be some strange kind of infection. This doesn't help us as we still have the symptoms but if the body hasn't developed autoimmunity it should be easier to find a solution.

Do you have any abnormal blood tests at all? Is your ferritin normal? I am very curious if there are any patterns amongst young seronegative males like us.

I don't know what triggered my illness, could also be a combination of factors, but I am sure that it started in the digestive system due to imbalanced gut flora.

Other things that you could research are how to maintain adequate levels of testosterone and vitamin D. Vitamin D shouldn't be hard in Portugal but watch out because some people with SS react negatively to sunlight. That would be sad.

Don't be too hard on yourself. It is normal to trust doctors and they don't have perfect knowledge.

[MAT51]

(continuation...)

Hi MAT51.

I agree more young people have than the doctors think. In my case, if I wasn't persistent, I was now being treated for psychological disorders. The first thing they though of what was going on with me... Depression. And I just thought to my self "I just want to feel good and able to do all the things I did. I just want to be happy and stop feeling the pain in my eyes. But can they be right, can it be depression?". Well... Of course it was not. It was something bigger happening. I'm sorry for the thousands of people (and young people) which are dismissed based on their age. Having that said, I don't think many people have this. Majority of people doesn't even know what's dry eye.

Is the young judo player Emma Fletcher? I heard about her case, I think she is 30's now. I would like to talk to her, yes...

I agree with the different manifestations of AI. I now have the Sicca symptoms and it is already devastating to me, I'm not sure how I will deal with the rest if it comes... If i'm not dealing well at all right now.


Hi snoweye.

I still can't think of this as chronic. That would destroy all my dreams and ambitions. I just hope in the future some major discovery is done, although being skeptical about it at the same time. Even if a cure is not found... Most AI have meds that help a lot and people somehow live normal lives (I think). I think Sjogren's and MS are examples where treatment lacks in big scale.

In your case, what do you think triggered it?.. I just think my case is just too ridiculous, and I think that is not just about "being me". It is just such a rare rare event. I'm a guy and I'm only 22... How could this happened... Nobody gives me answers. It just can be the Avelox. Due to that I deal with major regret everyday. As a kid I didn't know the power of such strong antibiotic... I everyday think about how could a doctor ruin my life single handedly and so easily... Avelox sould be a last resource and not a first line treatment... But he just prescribed it for a minor pharyngitis with some cough. How are these kind of things allowed..?

Regarding depression, I think mine will now go hand to hand with the course of the disease. I was highly depressed a few months ago, and stayed like that 3 or 4 months. I couldn't sleep well (would wake up 3/4 times a night), and would just drag me for work and back home. I now can sleep well. Overall I'm still highly depressed, but it is just the reflection of I truly feel about this. I too feel very alone and powerless. I was very independent before this, so I'm particularly having a hard time. Despite my family trying to help how they can, I think they are really useless and I feel alone and ill every day (they think they understand my pain, but they don't).

Keeping my expectations for the future very low is something that's quite hard for me yet. I just began working 1 year ago, this is very sad. That would be giving up all my ambitions and my future. But I guess someday I will have to do it... I admire your strengh of will and capability to fight. I sometimes just don't think this is my war... Yet. In the future i will have to face it better, I guess. Maybe someday we can talk.


Andre

Yes I was referring to Emma Fletcher. She is somehow a more realistic role model as well as a better communicator than Venus on the subject of Sjogren's and how it affects her. I am guessing that you will find a way of incorporating and even harnessing Sjogren's, if you get the full blown deal, much as I'm attempting to do now.

I was just as affected as you probably are now, at your age. But I had no knowledge of my autoimmunity and none of your awareness that it even existed. Consequently I never tried to accommodate my sicca symptoms or Sjogren's related issues, they just existed and I thought this was just my bad luck - poor genes etc. Perhaps this was for the best because I have always tried to realise my ambitions, have had a family, a husband of many years and a career as an artist. This has all been despite periods of great unwellness.

So I do hope you won't just succumb to a doom and gloom scenario of low expectations,  but will learn to accommodate the possibility of having a long term condition somehow. I'm not keen on positivism for the sake of it at all - but I do think finding good role models can be very helpful. Even at 54, knackered and sick after years of medical neglect, I'm hoping to undertake a PhD if I can get funding. You see I still have endlessly high expectations of myself! Mat

[grlds95]

Hi snoweye,

"I have heard of several other people having adverse reactions to some antibiotics including one woman who developed SS symptoms. She made another post saying eventually things went back to normal. However I don't know if this was temporary remission or a permanent recovery. Have you tried talking to other people or finding groups of "antibiotic victims"? Perhaps you might find some useful information there." - Well... I did not. That antibiotic vitims you reffer to, mainly react to antibiotcs and then life becomes very difficult for them right after. In my case (3 years ago), it became a bit different, but not life-impairing at that moment. I just think the antibiotic imbalenced my gut, and expelled the good bacteria. I became intolerant to lactose and I started to have very abdominal pain after playing sports (stomach cramps, and my stomach/ intestines would make noises when it hurt more, most of times). I lost the passion I had to playing football, but yes, I ignored my symptoms becauseI thought I couldn't treat them.

"There is still the possibility in seronegative cases like us we don't actually have an AI disease. For example it could be some strange kind of infection. This doesn't help us as we still have the symptoms but if the body hasn't developed autoimmunity it should be easier to find a solution." - Yes that's true. In my case I have a positive lip biopsy (3 in the Chisholm-Mason classification)...

"Do you have any abnormal blood tests at all? Is your ferritin normal? I am very curious if there are any patterns amongst young seronegative males like us." - My blood test are absolutely perfect. Except for a bit high colesterol. About ferritin I don't know if it was test. I was analysed in about 60 blood markers, maybe that was one of it, but I don't know.

"I don't know what triggered my illness, could also be a combination of factors, but I am sure that it started in the digestive system due to imbalanced gut flora." - I associate my symptoms with the digestive system due to imbalanced gut flora too... And then the surgery on a non-balanced body did the rest... I recovered very well, but one week later the misery started... It started with pain behind my right eye (maybe the lachrymal gland) and that eye became dry. In the 1st month I had very very teary eyes (when I yawned, etc) so at that time I excluded Dry Eye, not knowing a thing about it. Then, after that 1st month, the burning started and never went away, in both eyes. I noticed dry eye when I would yawn and my eyes would stay completely dry, as this was not normal for me. Don't know if the anesthesia which reached my sympathetic/ parasympathetic system, through my stellate ganglion, had something to do with it.

"Other things that you could research are how to maintain adequate levels of testosterone and vitamin D" - I will have an appointment of Functional Integrative Medicine in 3 weeks, let's see what the doctor has to say and if he brings that to the table. I know the treat autoimunne with high doses of vit. D, but yes in my case I think it's not the issue...

"Don't be too hard on yourself. It is normal to trust doctors and they don't have perfect knowledge. - Well... If I had read the Avelox's information... Maybe I would'nt have take it. But I didn't really had a clue at that time. Just knowing that iboprufen would have treated me well, I just feel consumed when I think about that.. But how many 18 year old take avelox when tey don't need it and how many react badly? Don't know, never will do, so...

Andre

[grlds95]

MAT51,

I was just as affected as you probably are now, at your age. But I had no knowledge of my autoimmunity and none of your awareness that it even existed. Consequently I never tried to accommodate my sicca symptoms or Sjogren's related issues, they just existed and I thought this was just my bad luck - poor genes etc. Perhaps this was for the best because I have always tried to realise my ambitions, have had a family, a husband of many years and a career as an artist. This has all been despite periods of great unwellness.

So I do hope you won't just succumb to a doom and gloom scenario of low expectations,  but will learn to accommodate the possibility of having a long term condition somehow. I'm not keen on positivism for the sake of it at all - but I do think finding good role models can be very helpful. Even at 54, knackered and sick after years of medical neglect, I'm hoping to undertake a PhD if I can get funding. You see I still have endlessly high expectations of myself! Mat

I am sorry you were affected so soon as me, too. I am happy you lived through it, and eventually managed it. In my case (probably yours too) the thing is I have so constant burning of my eyes, that most of time I'm not able to think straight, as I normally did. As I never really wanted something out of this world to be happy, I'm really struggling, because the one thing I ever wanted was to be healthy and I remember thinking that illness could happen to anyone, so I was thankul about my health and was trying to build my future on my own. I accommodate the possibility of having a long term condition, if treatment options did something! Nothing helps me right now! So I can't accept it. Add to that the thing that I'm a 22 yo male and whenever I open a study it says 90 or 95% women, ALSO ADDING EVEN IN WOMEN IT IS VERY RARE TO HAVE IT UNDER 35 yo. I was rading an article the other day that was about a "rare case of a 25 yo woman". So what's my case after all??? Non existing?? Something is gotta be wrong somewhere, as I lived a healthy life before this and studies just mention women. I think that makes it very hard for me to deal with this too.

Andre

[snoweye]

Andre, it seems to me that the symptom bothering you most right now is the burning eyes. Although of course that is just one small part of SS.

Some people do not react well to any eye drops. Could the burning be because of an allergic response? I think somebody here already mentioned you could try eye drops that contain antihistamines. I think there are also some eye drops that contain NAC which might help.

Have a read here about eye drops:
http://www.whatyousjo.com/2017/06/trying-xiidra-with-restasis-for-sjogrens-syndrome/

It is also possible to get eye drops made using your own blood. They are called autologous eye drops and they really help some people.

Also there some new eye drops coming to he market soon which mimic the lipid layer normally produced by the meibomian glands. Without this fatty layer, anything you put on the eyes evaporates very quickly.

I hope you can find a solution to the burning then afterwards you might feel a bit better.

Just curious but what did you study at university? Do you have a technical or scientific backgrounds? Your English is excellent and it is tough even for a native speaker to fully understand all the medical terminology relating to this darn disease.

[grlds95]

Hi snoweye.

Yes. The eyes burning all day non stop is what is taking me down at the moment. I know "of course that is just one small part of SS", but, as you know, we all have it different and don't know what will hit us more, but right now I have to focus on my major problem. At least for now. I don't know if a 'more systemic' SS will haunt me in the future. I can just guarantee I'll stick to my supplements and will try to avoid potential triggers.

"Some people do not react well to any eye drops. Could the burning be because of an allergic response?" - An allergic response to what? Could an allergic response last 7 months? I don't think that's the cause.

Regarding drops and what's currently on the market, I know about the options, thanks for mentioning it. My eye exams revealed 7mm/5min Schirmer (with anesthesia) and 8s of TBUT (tear break up time). I had a prior Schirmer test done which result was 3mm/5min. As we know, it's not the accurest thing on earth. I know people have these SIGNS worse than I do but SS is often associated with SYMPTOMS exceeding signs. Maybe due to corneal nerves, I don't know.

" Also there some new eye drops coming to he market soon which mimic the lipid layer normally produced by the meibomian glands. Without this fatty layer, anything you put on the eyes evaporates very quickly." - Are you talking about Lacripep? That's the one that gave most hope so far. https://www.news.virginia.edu/content/new-dry-eye-drug-first-aims-treat-cause-rather-symptoms
The first trial (about 200 people) is only accepting people with primary SS. Let's see how trials go. I hope it really goes 100% well.

"Just curious but what did you study at university? Do you have a technical or scientific backgrounds? Your English is excellent and it is tough even for a native speaker to fully understand all the medical terminology relating to this darn disease." - Thanks man. I was in Sciences & technologies from 10th to 12th grade and after that I got a bachelor degree in Finance & Accounting (ending last year). I just started working in last year's September. Then, in February, all started to fall appart due to my eye condition... I never enjoyed life since then.

Andre

[snoweye]

Andre, how are you getting on with your eyes?

Two suggestions for you.

1) Flaxseed Oil
Some people with dry eye have had success using flaxseed oil so it might be something worth researching. However please be very careful and do research. I think you have to use special flaxseed oil that has had something removed so not just anything from the supermarket.

2) Collagen Powder
A good brand is Great Lakes. This will help to heal your digestive system. There are no risks and in some cases people have even achieved remission after taking collagen. Of course don't want to get your hopes up. No single measure seems to help everybody.

Also have you had a stool test yet to check for pathogenic bacteria and yeast?

For?a!

[aussie mum]

Might be worth getting another opinion by an Immunologist.
My daughter was diagnosed at 17 and is treated by an Immunologist