Hello guys. I have been gaining courage to introduce myself here. I am a 22 yo male from Portugal. I am writting here hoping to understand this disease better and to hear your opinions in ways to manage the symptoms. (i am sorry for the long post but i need help)
Well... Everything was perfect 7 months ago. My medical history is pretty "clean" and i think i do not have genetic predesposition (i still have 4 healty grandparents and my 2 parents), so i think i could (and maybe should) be a case study so science could get a better understanding of these disease, because i just did certain few things in the past, and being a male, my short list of triggers could be interesting to study:
- i took roaccutane for acne 2 times, first when i was about 16 and then when i was 18. I think it was one of the lower doses (20mg) and took it about 7/8 months each time
- i had 2 or 3 antibiotic courses per year in the last 4/5 years due to Pharyngitis i usually get 2 or 3 times a year
- i reacted badly to one of those antibiotics and became intolerant to lactose.
- i had a small surgery (arthroscopy) to repair the labrum in my shoulder, with regional and local anesthesia.
1 week after surgery my problems started... It all started with a sort of nerve pain in my right eye that nobody could explain. The 1st month the problem was only in my right eye and my eyes teared a lot (so i wasn't suspecting dry eye at that time). In the 2nd month the burning started in the left eye and then it was on both eyes. Since my surgery i could never watch TV, play games, work or just relax doing nothing, without burning and pain on my eyes.
The thing is 3 months after my eyes problems started, i develop a kind of white coating on tongue (sometimes looks like thrush but i guess it is not because i can't remove it) which i think is dry tonge - my mouth is moist most of time but the problem with my tongue makes it difficult to speak normally sometimes.
I had never been to a hospital before my shoulder stuff but...my hospital/doctors madness had began. I have now been to 10 ophtamologists and 2 rheumatologists. One ophtamologist made me the Schirmer test and he said it was 3mm/5min and advised me to a rheumatologist. Well... I then did a huge pile of blood testing and it ALL came back normal (no antibodies, perfect Sediment. rate, perfect white blood cells, etc etc). Despite the entire world telling me it was not sjogren's 100% (because i am male and young) i went for the lip biopsy. Yes because doctors can tell that is it not some disease, but they can't get rid of my dry burning eyes and of my odd dry tongue.
Well...Biopsy revealed inflitration of lymphotics - 1 focus - and the Dr. who did it wrote "indicates possible sjogren's syndrome". The joke here is that i then went to the best rheumy here in Portugal and even this data he says he thinks i don't have sjogren and prescribed pilocarpine. He said that the biopsy is important and taken into his consideration but it could be explained by something that not sjogren's lol... This is ridiculous.
My eyes burn all day every day and i just stopped doing the things i loved. (It is so hard to explain the pain to others, isn't it?). When they are not burning they just don't feel good with always some pain in them. My eyes are not sand-paper dry but i feel an overall lack of moisture (which would be ok if they didn't burn) - needless to say i tried all OTC drops out there and it just doesn't help... I'm on cyclosporin 1 month and 1 week now and not helping.
I just wanted to ask... they say this disease (and other AI) is slowly and progressive, so... it is "normal" what is happening to me? It can just be sjogren's right? Have you heard of similar cases? The only problem i had for some time before this is intestinal (i go to bathroom seldom) which started to bother me after the reaction to the antibiotic but it bothered me 10 out of 100 and it was ok.
I just started working 1 year now and it has been so difficult (i didn't know this disease or even dry eyes existed so i can't blame others...) but who is going to look at me at 22 and think that i have some problem? Or understand me? I mostly look normal, my eyes just become reddish sometimes. This is so stupid and the worst is i lost all hope because i feel Science is so far from understanding Sjogren's... they can't even tell what causes it, so how they are going to solve it? They are not. And my life will be crap like this.
Looking back i feel i didn't need to take or do any of the things i did medical-wise, so this all regret feeling consumes me sometimes... But come on.. there are people who probably take 20 antibiotics per year, took roacutane and did 5+ surgeries and are fine so... We have something different i guess,and it just s*cks.
Please tell me your advices and how you helped your dry eye, and if you could eventually manage it and feel it quite normal...
Andre
Hi. So sorry for all that you are going through. You already know you are not the norm for Sjogren's just being male and add to that being young. I think your should consider looking for another rheumatologist even though you said you saw the best one. It is a very misunderstood disease, even among rheumatologists. What helps me with dry, burning eyes is a warm compress every day or several times a day if they are very bad. Just take a soft wash cloth and soak it in warm water, wring it out and with your eyes closed, place it over them until the cloth becomes cold. The thing about Sjogren's too is that it flares and your extreme eye dryness and pain may get better by itself if you are having a flare. Take a deep breath and keep looking for answers until you find them. Best of luck.
"Biopsy revealed inflitration of lymphotics - 1 focus - and the Dr. who did it wrote "indicates possible sjogren's syndrome". .. best rheumy here in Portugal and even this data he says he thinks i don't have sjogren and prescribed pilocarpine. He said that the biopsy is important and taken into his consideration but it could be explained by something that not sjogren's "
At that point I would have persisted at the appointment and asked the Dr. what other possible explainations and what course of investigation he was going to take, either his doing further tests or referring another specialist. However, understand please that this assertive stance is what we learn after years and many appointments with specialist when we have left with no answers or course of relief. It is a 'learning curve'. I see in reading your post that you are persistent.
The Rheum has the biopsy result and has not taken it lightly. It is for him, it seems, early when there are not antibodies present.
"The lip biopsy has to be interpreted by a pathologist with special training. The characteristic biopsy finding in Sjögren's syndrome is "focal lymphocytic sialoadenitis" and is recognized by the presence of one or more tight clumps of lymphocytes (more than 50 in number) adjacent to normal gland tissue and surrounding a duct in a 4 square mm area of gland tissue. These clumps of lymphocytes are called foci and their approximate density in the tissue is called a "focus score". The lip biopsy may reveal other types of glandular inflammation and point to alternative diagnoses, such as sarcoidosis, amyloidosis or lymphoma."
https://www.hopkinssjogrens.org/disease-information/diagnosis-sjogrens-syndrome/labial-gland-lip-biopsy/
https://librepathology.org/wiki/Sj%C3%B6gren_syndrome
i had 2 or 3 antibiotic courses per year in the last 4/5 years due to Pharyngitis i usually get 2 or 3 times a year
i develop a kind of white coating on tongue
I am really curious about this as the Pharyngistis is recurring, multiple doses of anitbiotics per year x's years and white tongue? This is not normal. Is there something going on at the gut level? Or do would it be advisable to see an ENT to see if tongue/throat is dry and allowing bacteria, etc to cause these conditions. Are general doctors just writing scripts for antibiotics without further investigation?
I recently attended a seminar re: Dry Eyes and Disease:Care.
Of interest is that they are seeing more patients coming in who are not aware that due to current lifestyle... we blink far less when reading, TV, computer use and so tear film evaporates = dry eyes. Lowering or tilting head back so our lids cover larger portion of eyes helps lessen evaporation and training patients to blink more. Go figure.
Higher viscosity drops help, and I find 'relief' using eye gel at bedtime.. very soothing (during pollen season I use a bit in daytime as well.. and gardening.. not enough to blur vision)
Rheum increased pilocarpine and added that it has been noted in studies to help with dry eyes.
You have not done 'too many tests' as you pursue/advocate for your own well being. And the tests set a reference point for any future tests.
AI disease are relatively young in the scheme of medicine. The research is evolving. And it really does grow as many 'eureka' stepping stone in one disease, benefit another. The growth in data banks is insanely vast, no longer the image of the white coated Dr. in the research lab.
Welcome to the forum. On average it takes 7 years to diagnose this disease as it is a diagnosis of elimination. I was very frustrated when I went to the Rheumatologist so I asked him, "Dry eyes, nose, mouth, skin and bum, what do you think it is?"
His answer was, "Sjogren's / S.I.C.C.A.". I have had a bad reaction to most of the common drugs and so I use supplements.
My symptoms go back to age 5, so I thought everyone had issues with dryness. AI diseases runs in my family on my dads side. At family reunions we speak of non-drying soaps and methods of dealing with dryness issues.
Do not be discouraged. AI diseases have been around for over 100 years. They are hard for Medical doctors to deal with as they do not have an idea of how these diseases work. Lister Institute had a theory that I think is correct. But since it is a theory from Lister, Medical Doctors do not want to look at it.
Check our signatures to find out what some of us are taking. Before trying anything someone else is taking, check for side effects, drug interactions, and counter indications.
Good luck in managing your health challenges. :) Sjogrens :)
Hi, welcome to the group :)
I've heard of some cases where antibiotics triggered SJS.
Which ones did you take?
I also get the burning eyes and have found much of it is from allergic reactions
due to not having enough moisture to protect the eye from irritants.
If this is your case then look for eye drops which contain antihistamines.
As far as Restasis- you need to be on them a few months to tell if they're helping or not.
For your dry tongue- Ubiquinol helped me alot with that.
Have you been tested for igg4 related diseases? They usually try to rule that out during the diagnosis process when men show SJS symptoms.
You sound similar to me.
I'm a 22 year old male. I had a sudden onset of symptoms over a year ago. At first it was dry mouth only, then it became dry mouth and dry eyes.
All of my bloodwork has been negative. I even took the early sjogrens syndrome panel. I haven't taken the lip biopsy as I don't see the point, it wouldn't change my treatment.
At first I was very hopeless and thought my life was over. It is a hard adjustment to make when we are young and do not expect to have to deal with the reality of chronic disease. Words like lifelong and incurable are scary and can make us feel like we should give up, now.
My perspective has changed a lot since then, and I began to take some proactive measures that I think have made a big difference. Instead of getting too deep into my story I'm going to give you some points from what I've learned :
- Diet makes a difference. Get on the autoimmune Parlodel diet and stick to it. I have begun to notice that my flares for into diet.
- Look up Helminthic Therapy and join the Facebook group
- There are many researchers working on inflammatory disorders so maintain hope
- read epictetus's enchiridion. It has become my daily philosophy and allows me to cope.
Hi guys. Thanks for your time and answers, it means a lot.
Fortitude - thank you for your words and advice for the eyes. will try it
quietdynamics -
At that point I would have persisted at the appointment and asked the Dr. what other possible explainations and what course of investigation he was going to take, either his doing further tests or referring another specialist. - Yes i persisted and did ask him. But, as you may no, doctors just don't say "i don't know" and they sometimes seem to avoid questions - but he told me that our body produces other kinds of antibodies that we can not test and that could be the reason for the biopsy result. lol
The Rheum has the biopsy result and has not taken it lightly. It is for him, it seems, early when there are not antibodies present. - Yes, i somewhat feel that he is "afraid" to diagnose such rare case, and because my symptoms came out of nowhere...or he really believes i don't have, which i doubt a lot.
I am really curious about this as the Pharyngistis is recurring, multiple doses of anitbiotics per year x's years and white tongue? This is not normal. Is there something going on at the gut level? Or do would it be advisable to see an ENT to see if tongue/throat is dry and allowing bacteria, etc to cause these conditions. Are general doctors just writing scripts for antibiotics without further investigation?
- Well. Talking about this drives me desperate and crazy. Because at that time, 2 or 3 years ago, i had no clue about antibiotics contra-indications, and when i had some pharyngistis a sh*t doctor would exam me and just observe the redness on my pharyngis and give antibiotics - they had no clue if it was viral or bacterian - and just prescribe some sh*t! how is this even promised and allowed? i could be a doctor too! So, yes, they just write scripts for antibiotics without further investigation! And then a strong antibiotic (with no reason at all to give me that...) - Avelox, may just have ended my life comfort. At the gut level - i don't evacuate like a normal person does,i guess. For instants, now - i didn't evacuate for the last 3 days. And this is quite regular to happen. For me it is good if i can evacuate every 2 days...- what do you think i can do about that? any suggestions?
Of interest is that they are seeing more patients coming in who are not aware that due to current lifestyle... we blink far less when reading, TV, computer use and so tear film evaporates = dry eyes. Lowering or tilting head back so our lids cover larger portion of eyes helps lessen evaporation and training patients to blink more. Go figure. - Yes, i am aware of that. The tilting head back or have the eyes less open i am aware of because i notice when i open the eyes wider, it burns more. Having that said, i don't have evaporative dry eye (my TBUT is > 15s), my dry eye is aqueous deficient and sometimes it even burns with eyes closed.
Rheum increased pilocarpine and added that it has been noted in studies to help with dry eyes. - i am aware of this too. wiil try to start my soon.
AI disease are relatively young in the scheme of medicine. The research is evolving. And it really does grow as many 'eureka' stepping stone in one disease, benefit another. The growth in data banks is insanely vast, no longer the image of the white coated Dr. in the research lab. - let's hope a lot of eureka's start to happen in the next few years - but my hope is minimal - i feel science is far far away from understanding. The lack of communication and the lack of patiens-following are big issues too
[/quote]
Joe S. -
His answer was, "Sjogren's / S.I.C.C.A.". I have had a bad reaction to most of the common drugs and so I use supplements. - and what is your discomfort with just that treatment (out of 100?). I try to take omegas every day (hyabak caps) and i also take flaxseed. also tried 3 or 4 natural supplements the last 2 months.
My symptoms go back to age 5, so I thought everyone had issues with dryness. AI diseases runs in my family on my dads side. - Obviously that s*ucks too... in my case i don't feel i am genetically predisposed so... i think modern medicine did this to me.
Do not be discouraged. AI diseases have been around for over 100 years. Lister Institute had a theory that I think is correct. - well, that's one of the things which discourages me, i feel that in that 100 years very few has been discovered.
[/quote]
(continuation)
Sharon -
I've heard of some cases where antibiotics triggered SJS.
Which ones did you take? - well... the bad one was Avelox - i vomited, had diarrhea and became intolerant to lactose... i feel so much regret; i didn't need to take such strong medicine. And i was like 19.
I also get the burning eyes and have found much of it is from allergic reactions due to not having enough moisture to protect the eye from irritants. - i had allergy to dust which sometimes triggered my pharyngitis and when the sj?gren symptoms started, my allergies stopped...and i have less cold. it is so strange. my nose used to run sometimes and now it stopped. i will try Zaditen soon if i don't improve...
For your dry tongue- Ubiquinol helped me alot with that. - is it a natural supplement? did you have a kind of white "thrushy" tongue? is there any way i can show you my tongue and hear your opinion? :)
Have you been tested for igg4 related diseases? They usually try to rule that out during the diagnosis process when men show SJS symptoms. - I don't know. i did tests to about 60 elements and i think i don't have that kind of diseases. My symptoms are dry burning eyes and dry white-coated tongue...
[/quote]
alwaysimproving -
You sound similar to me.
I'm a 22 year old male. I had a sudden onset of symptoms over a year ago. At first it was dry mouth only, then it became dry mouth and dry eyes. - i would like to hear all you story :) i think our odds are like 0.005% so it would be interesting to hear from you. is there any link to some post where you told your story?
All of my bloodwork has been negative. I even took the early sjogrens syndrome panel. I haven't taken the lip biopsy as I don't see the point, it wouldn't change my treatment. - this is saddly very true.
At first I was very hopeless and thought my life was over. It is a hard adjustment to make when we are young and do not expect to have to deal with the reality of chronic disease. Words like lifelong and incurable are scary and can make us feel like we should give up, now. - this was me a month ago. i am now a bit stronger mentally. but i still think life will be a misery like this. and phisically i am still feeling very bad.
[/quote]
Just let me add something i forgot:
i also got candidiasis from my girlfriend like in last year's september. i think this was a warning that my good flora was gone, but at that time i didn't know... but my genital organ never become the same. It is like 85/100 but sometimes is drier than i wished... other possible trigger? bah
Thanks guys :) :)
Here is information for an Early Sjogrens Test:
"The success is the achievement of an early test, pre the occurrence of antibodies Ro and/or La. It is not even dependent on ANA as a screening tool."
https://sjogrensworld.org/index.php?topic=22714.msg242036#msg242036
2016 Three novel antibodies may lead to the early diagnosis of Sjogren's syndrome (The Penn Dry Eye & Ocular Surface Center, Scheie Eye Institute, presented the seminar I attended.)
http://ophthalmologytimes.modernmedicine.com/ophthalmologytimes/news/novel-sjogren-s-syndrome-antibodies-dry-eye-patients
If the test is not available in Portugal, you could possibly inquire as to near countries, write to diagnostic manufacturer.
(Many us drive hours for treatment)
The problem, a very real one, is that should test prove positive for biomarkers and antibodies are not present a Dr. is likely to take a 'wait and see' position with monitoring. Perhaps treat some of the symptoms= drugs (and you are young). You could then use Google Scholar and search "Sjogren's + Portugal" to see who and where research is being done in your country. Send letters of inquiry to those professionals.
Should you be able to avail yourself of test.. and it is negative.
An examination now or after by an Immunologist may be advisable.
Gastro/bowel issues: Gastroenterologist informed me that adding more water + fiber supplement (powders are mostly Psyllium, so generic will do) helps those with Diarrhea or constipation. Balances to a more normalized gut level. * This was the advice even though I explained I consume more a Mediterranean style diet for 45yrs. I have problems as a symptom of flares.
Intuitively at that time, all those yrs. ago I also stopped milk and sugars and fried foods, processed products.. actually it was easy to do.
Candida/Thrush:
Take the probiotics between antibiotic doses (remember that antibiotics can kill these good bacteria)
"Oral candidiasis, or thrush, is a common problem in dry mouth patients. Thrush can cause oral burning and pain. The appearance of thrush in a dry mouth patient often is atypical and appears as red and irritated instead of the typical white cottage-cheesy." https://www.sjogrens.org/files/brochures/Thrush.pdf (Being aware of pre-white coating is a benefit in control)
(Medical scan showed damage to glands.. but, even prior when I brush teeth I also use brush to massage and clear any debris from inner cheeks, tongue, lips. In morning I use peroxide/water rise. Even with that I have oral issues. But, hopefully less without the extra bit of care.)
Just some suggestions.
Quote from: grlds95 on August 11, 2017, 06:50:00 AM
(continuation)
Sharon -
I've heard of some cases where antibiotics triggered SJS.
Which ones did you take? - well... the bad one was Avelox - i vomited, had diarrhea and became intolerant to lactose... i feel so much regret; i didn't need to take such strong medicine. And i was like 19.
I also get the burning eyes and have found much of it is from allergic reactions due to not having enough moisture to protect the eye from irritants. - i had allergy to dust which sometimes triggered my pharyngitis and when the sj?gren symptoms started, my allergies stopped...and i have less cold. it is so strange. my nose used to run sometimes and now it stopped. i will try Zaditen soon if i don't improve...
For your dry tongue- Ubiquinol helped me alot with that. - is it a natural supplement? did you have a kind of white "thrushy" tongue? is there any way i can show you my tongue and hear your opinion? :)
Have you been tested for igg4 related diseases? They usually try to rule that out during the diagnosis process when men show SJS symptoms. - I don't know. i did tests to about 60 elements and i think i don't have that kind of diseases. My symptoms are dry burning eyes and dry white-coated tongue...
alwaysimproving -
You sound similar to me.
I'm a 22 year old male. I had a sudden onset of symptoms over a year ago. At first it was dry mouth only, then it became dry mouth and dry eyes. - i would like to hear all you story :) i think our odds are like 0.005% so it would be interesting to hear from you. is there any link to some post where you told your story?
All of my bloodwork has been negative. I even took the early sjogrens syndrome panel. I haven't taken the lip biopsy as I don't see the point, it wouldn't change my treatment. - this is saddly very true.
At first I was very hopeless and thought my life was over. It is a hard adjustment to make when we are young and do not expect to have to deal with the reality of chronic disease. Words like lifelong and incurable are scary and can make us feel like we should give up, now. - this was me a month ago. i am now a bit stronger mentally. but i still think life will be a misery like this. and phisically i am still feeling very bad.
[/quote]
Just let me add something i forgot:
i also got candidiasis from my girlfriend like in last year's september. i think this was a warning that my good flora was gone, but at that time i didn't know... but my genital organ never become the same. It is like 85/100 but sometimes is drier than i wished... other possible trigger? bah
Thanks guys :) :)
[/quote]
I've been reading a few posts today and want to jump in.
Ubiquinol is the active form of CoQ10. It's better absorbed than regular CoQ10. However, it's best to choose a water and fat-soluble form of either CoQ10 or ubiquinol for even better absorption. CoQ10 is an antioxidant that our bodies make and it is used to help our cells produce energy. It's mostly commonly known for it's heart benefits, but there is research on CoQ10 and gum disease and oral health. I take 100mg of water and fat-soluble CoQ10 per day.
For those who mentioned GI issues, the FODMAP diet has done wonders for my IBS-like symptoms. Just something to consider. A dietitian can help.
Yes, I had the thrush as well as was given candida meds for it which I couldn't tolerate.
When the Ubiquinol kicked in the thrush went away.
You can upload a picture of your tongue to a site and I can have a look, though thrush is usually very obvious.
You should google IGg4 diseases and see if anything fits. Dry eyes and mouth are a prominent symptom of IGg4 diease usually before anything else appears. It is difficult to diagnose it and 50% of the time doesn't show up in blood tests. Biopsy is more diagnostic of it. It usually has a quick response to high dose Prednisone.
Hi Andre,
Welcome. My middle name is also Andre and I am half Portuguese. What part of Portugal are you from?
I am another young male (well now 32 so relatively young) and like you all my blood tests so far are normal. Based on people I have talked to, it seems to me that the majority of young men with SS seem to be seronegative. However this is just my experience so not statistically valid.
Immunology is very complicated, but as far as I understand it the ANA blood test only checks for about 6 different antibodies and it may well be a different auto antibody that is causing the problem. For example recent research has implicated the anti-M3R auto-antibody in Sjogren's Syndrome and this is something that is not even currently tested for.
So far I have been reluctant to have the lip biopsy because it does not seem to conclusive (the result is subject to interpretation) and the result does not change the treatment which is Plaquenil. I am not very keen to even go on this drug because it doesn't help everybody, doesn't seem to help dryness and has side effects.
It seems many diseases start in the digestive system as a result of imbalanced gut flora. In your case caused by the antibiotics. I recommend having a comprehensive stool test and using probiotics and anti-bacterials to build up a healthy micro biome. Apart from reducing AI symptoms, this may also have the effect of improving your constipation. The stool test that I used before was done by a lab called Doctors Data.
Since my SS symptoms start my constipation became very severe. However recently I have made huge improvements by eating raw sauerkraut, drinking regular ginger tea and adding 1000mg of Vitamin C per day in supplement form. I did all these things at the same time so not sure what helped however I now go twice a day most days. I was also taking magnesium, however my stool was actually too loose even with a small dose of magnesium so I stopped that. There is a magnesium supplement called Natural Calm which I think will really help you. Start slow though, otherwise you might have an extreme opposite effect!
Like alwaysimproving, I also thought that my life was over when I suddenly developed SS. I became very depressed and only recently am I trying to fight this disease. It really sucks for everybody, but in one way we are lucky being young and living in 2017 because progress in AI research is being made constantly. Every month there seems to be some kind of breakthrough.
Don't give up hope and take care.
Snoweye
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
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.)
When you are out in windy areas, wear sunglasses that shield your eyes from the wind. Protection from the sun's glare may also help the burning. Get sufficient sleep.
I have addressed the eye issue because it has been a major issue for me. Best wishes in finding the help you need. Try not to be discouraged.
Cheryl
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.
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.
Quote from: grlds95 on August 18, 2017, 03:50:54 AM
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.
Quote from: grlds95 on August 18, 2017, 03:50:54 AM
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.
Quote from: Cheryl on August 18, 2017, 06:59:38 PM
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.
Quote from: jazzlover on August 18, 2017, 09:57:49 PM
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..
(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
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.
Quote from: grlds95 on August 23, 2017, 04:16:14 AM
(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
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
MAT51,
Quote from: MAT51 on August 23, 2017, 10:34:31 AM
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
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.
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
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!
Might be worth getting another opinion by an Immunologist.
My daughter was diagnosed at 17 and is treated by an Immunologist