I've finally fallen off the cliff ... What gives?

[jazzlover]

Just wondering why I'm suddenly worse regarding Sjogren's and other conditions I have. I found out last year that I'm salicylate sensitive and histamine intolerant. So as a result, I cannot eat MANY green vegetables and other "healthy" foods. (I think I'm getting better recently, so I'm trying to add a few now that I previously could not tolerate.)

So .. now after at least 10 yrs of having SJS it is suddenly really affecting me. I still have moisture in my mouth thank goodness, but my eyes burn like the dickens and are dry and itchy. I saw my eye Dr yesterday and he suggested new drops which aren't helping .. and perhaps punctal plugs at my next visit. I think we will have to go that route.

I also have fallen off the cliff with my cataracts. They just suddenly got really bad, covering 2/3 of my lens. So far, I can see fine (??) but he said it will go the other way soon...within the next 12 months at best.

I'm just wondering WHY all this has changed. My joint pain is not good either and I can't take anything for pain except curcumin which I take 3 times a day.

Any tips or ideas?

Any suggestions on going for the temporary plugs as opposed to the more permanent ones?

[Carebear]

Hi jazzlover,

I am sad to hear you have fallen off the cliff.  I have this image of you hitting those of us who are already piled up at the bottom.  Hopefully you will have a soft landing. 

I was never able to use the temporary plugs because they don't make the plugs small enough for me.  So I went right to the cauterized ducts.  After the initial discomfort, it was the best thing I have ever done for my eyes.  The dryness isn't gone, but it has improved.  I forget.  Are you using Restasis?  If not, that may be another option.

For the joint pain, you may want to investigate its cause.  That would help determine the treatment.

If only I understood the "why" of Sjogren's...  I hope you get lots of answers from all the smart cookies on the board.

[jazzlover]

You didn't try the more permanent plugs then? I think they are even larger than the temporary ones.

As for Restasis.. I'm not too keen on steroids and it's based with castor oil, which I doubt I can handle due to the salicylate sensitivity.

My joint pain is probably from Lyme disease .. or just osteoarthritis.. not much I can do about either one right now. I've already been treated for the Lyme.. pretty successfully .. but you know how that goes. You never really get rid of it.

[Carebear]

If it is osteoarthritis, then you are correct.  With your drug sensitivity you are limited.

No, I didn't try the more permanent plugs.  I just went straight to lazering both bottom ducts.  Next time we will be doing the top.

I have been seeing a very knowledgable chiropractor for my osteoarthritis and I have experienced much relief.  Acupucture did not help in my case, even after à dozen treatments.  And you know, I have both RA and osteoarthritis.  I would take RA any day.  Far less pain and there is treatment that can manage it well.  That has been my experience anyway.  Not saying that either are a walk in the park.

[Suslew]

I have permanent punctual plugs in my lower tear ducts and they are fabulous.  I've had temporaries in my upper tear ducts also with good results.  I'm moving on to cautery for the uppers soon.  Whichever option you choose, I'm sure you'll get good relief.  Good luck!

[Carolina]

Hi Jazzlover,

There's plenty of room at the bottom of the cliff, and plenty of life, too.

A "new normal"?    Perhaps,

Cymbalta is on label for joint pain....and most  SSRI's will help.  I take Aleve.  I don't know if it falls into your 'no-no' category.

I don't have any plugs, so can't speak to that.  When I'm in a flare my eyes burn.  The itching sounds more like allergic reaction?

Mild exercise also helps with joint pain unless it's really bad, then not so much.

Hang in there.....don't look up and don't look down.  Just look around, we're waving hello!

Hugs,  Elaine

[CaliSjogrenMale]

Carolina, I read Cymbalta can dry you out.  Do many with SjS use this?  My GP tried to prescribe this to me and my Rheum stepped in and asked why he would prescribe an SJS  person this med? Just curious. 

Jazz lover, hope this is just a flare for you that passes. 

Cymbalta is on label for joint pain....and most  SSRI's will help.  I take Aleve.  I don't know if it falls into your 'no-no' category.

[jazzlover]

Thanks for all the info, you guys!

No, no cymbalta .. no Aleve, no SSRI's. I take 25mg of trazodone.. Can't take more due to my A-fib. No neurotontin, no nothing.

I do go to cardiac rehab 3 times a week.  That helps.

The doctor said when our eyes are so dry, we cannot flush pollens, etc .. so we itch more.

Why do they use plugs if lasering them works just as well?

[lighthouse33]

Ditto on the cataract issue.  I am only 51, and in January, I was told, that it would be months if not years, until I have to have the cataract surgery.  My parents were in their 60s and 70s when they had theirs done. 

Feeling pretty rough also.  I blame it on all of the stress, a death in the family, dealing with the estate and the will, and disgruntled relatives who are not happy at all. 

[jazzlover]

Last August he said I was in a "pre-cataract" stage... now this. They first said something about cataracts about 5 yrs ago. I was 59 at the time.

Now suddenly, it's covering 2/3 of my lens.

Any answers on the laser question?

[Carebear]

Jazzlover, I can only speak about my own experience.  The ophthalmologist was reluctant to laser the tear ducts because of its permanence.   It's not reversible, whereas the plugs are. 

That's my take on it.  Once you go there...there's no coming back.  Seems silly considering my tears produce no tears at all.  I hope that makes sense.

[cari]

Just wondering why I'm suddenly worse regarding Sjogren's and other conditions I have. I found out last year that I'm salicylate sensitive and histamine intolerant. So as a result, I cannot eat MANY green vegetables and other "healthy" foods. (I think I'm getting better recently, so I'm trying to add a few now that I previously could not tolerate.)

So .. now after at least 10 yrs of having SJS it is suddenly really affecting me. I still have moisture in my mouth thank goodness, but my eyes burn like the dickens and are dry and itchy. I saw my eye Dr yesterday and he suggested new drops which aren't helping .. and perhaps punctal plugs at my next visit. I think we will have to go that route.

I also have fallen off the cliff with my cataracts. They just suddenly got really bad, covering 2/3 of my lens. So far, I can see fine (??) but he said it will go the other way soon...within the next 12 months at best.

I'm just wondering WHY all this has changed. My joint pain is not good either and I can't take anything for pain except curcumin which I take 3 times a day.

Any tips or ideas?

Any suggestions on going for the temporary plugs as opposed to the more permanent ones?

I'm just wondering if you've seen a nutritionist at all. From what I've read, autoimmune is related to leaky gut.  If you continue taking medication which destroys healthy gut flora without healing the gut first, then this condition simply gets worse.  As it gets worse you develop more and more allergies and sensitives and your gut can't absorb minerals and vitamins.  Because the healthy gut flora is wiped out, harmful infections and bacteria can take over leading to yeast infections.

So perhaps it might be worth considering seeing a nutritionist in order to heal the gut and bring back healthy bacteria perhaps through the use of probiotics and L Glutamine. Then once that it's healed you stick to an anti inflammatory diet and then see if your allergies go away.  Also, do you take black pepper and oil with your tumeric which leads to better absorption? I coat mine in organic coconut oil and black pepper when I take them.

[jazzlover]

Thanks, carl. That is part of my problem. I'm sure I have a leaky gut. Now I can't take black pepper or coconut oil... they are high in salicylates. Even curcumin is mod to high...but I seem to be able to get away with that one. If I didn't take it, the pain would overwhelm me for sure.

I'm between a rock and a hard place.

I saw a nutritionist and I had to educate HER on the salicylate issue...so.....

[cari]

Thanks, carl. That is part of my problem. I'm sure I have a leaky gut. Now I can't take black pepper or coconut oil... they are high in salicylates. Even curcumin is mod to high...but I seem to be able to get away with that one. If I didn't take it, the pain would overwhelm me for sure.

I'm between a rock and a hard place.

I saw a nutritionist and I had to educate HER on the salicylate issue...so.....

So does being allergic to salicylate mean you can't take probiotics or other supplements to heal your gut?  What plan are you following to heal it after consultation?

I found this information which you may find useful:

"Many people with gut issues, such as yeast/bacteria overgrowth or digestive diseases, can develop salicylate intolerance as a result of leaky gut Syndrome.  Leaky gut is a result of various digestive problems and occurs when the small intestine becomes too damaged to properly filter the size and types of food particles or chemicals that enter the bloodstream (for more on leaky gut read this). When these improper particles are allowed to repeatedly enter the bloodstream, the body tries to get rid of them by triggering an immune system response. Because phenols/salicylates are so common in most foods, a person with a leaky gut will have much higher than normal levels of these chemicals in their blood and can very quickly develop intolerances to these specific particles."
scdlifestyle.com/2010/04/phenols-and-salicylates-what-they-are-and-why-it-matters/

[jazzlover]

Good info.... albeit very sobering. I'm currently on an anti-fungal, I watch my diet and am dairy, gluten and as much sugar-free as is possible.

I can take probiotics in moderation. I also have SIBO... so my gut is a mess. Has been for years.

I spent 18 months on the Body Ecology Diet and that sent me over the edge because the sauerkraut is high in histamine.