Sjogren's syndrome

[badger]

I'm assuming that someone on this forum has Sjogren's.

Have you found anything that has made a marked improvement on your condition? any herbs, alternative therapies, along with conventional?

I'm asking because my mother has it, and she's pretty much eschewed any form of treatment, conventional or otherwise. She believes there's nothing out there that will help. I want to hear from other sufferers what they do to combat the dry eyes, mouth, etc.

thanks.

[bmccasland]

My mother has it as well. On the other hand, she also has some mental problems, and my sister and I are starting to wonder if she's just seeking attention. Mom isn't always a good and compliant patient when it comes to cutting things out of her diet (like alcohol). What she says she does, and what she actually does are often two different things.

Rant over.

Badger - does your mother also have trouble with tolerating exposure to the sun? I've heard my mom complain about the constant dry mouth, and she does drink a LOT of water - could float a boat I think in her consumption. But she says she has trouble with the sun, and she lives in sunny central Texas.

[KnottedYet]

Sometimes celiac disease can kick-start Sjogren's.

The screening test just requires a blood draw, and I would imagine her doctor already did it after she was diagnosed with Sjogren's. But it might not hurt to find those results or do a 2 week diet trial.

[MommyBird]

Autoimmune issues are very frustrating. My sister exhibits multiple types. Some have no outward symptoms but others do. It can be difficult to have empathy with someone who looks healthy and complains all the time.
My sister had flares for two decades before her condition became chronic. She would be healthy and active most of the time and then she would suddenly come down with a strange illness that would persist for several months. She would then bounce back and resume a normal life. This was especially devastating for her as a single mom because she often lost her job after repeated flares. Each episode was treated as an isolated event for years. Things spiraled down pretty far for her.
It all came together about 10 years ago when she had a flare that attacked her nervous system. We had to move her in with us for three years. She could barely walk, had difficulty with her bodily functions, severe dizziness and had terrible tremors and tics. She will never fully recover from this flare.
Her most pressing current problem is a heart arrhythmia issue and fluid retention.
The list would get real long if I described every flare in detail.
Very few of her conditions are noticeable but she is not the robust person that she used to be. I have watched her quickly lose muscle tone and mass with each major flare.
Another frustrating thing is that she can be perky and healthy one day and then won't be able to get out of bed for a week. Then she will get up one day like nothing was ever wrong with her. You cannot use the good days to discount the bad ones.

Step back from today and consider your mom's condition through the years. You may see signs. She may have seemed like a real pain because she was in real pain but thought it as just a normal life condition.
Yes, I do believe that many people take advantage of an autoimmune diagnosis. Sometimes, I am sure that my sister is overreacting to certain normal aging conditions. (She is 51) But the point is, I know that she does have this condition even if I cannot always see it.

On the bright side, my sister is now married to a wonderful nurturing guy. The problem is...they moved to Texas! She is in Atlanta to visit her 2 month old granddaughter this week so I will get to see her this weekend!

My prayers are with you and you mother.

[badger]

I can't recall when she was first diagnosed, it must be close to 20 years ago now. In the early days she popped aspirin a lot, as her doctor told her she can take it to control her pains. Then she developed an ulcer from it, and that pretty much turned her off to any medication.

Her usual complaints are her eyes hurting her (she wears swim goggles around the house because air hurts them), and she can't eat dry foods very well. She used to have really nice teeth, now they are capped with veneers (bad job, too, as she cheaped out and went to a bad dentist, another story) and she has constant dental issues due to lack of saliva.

bmccasland, my mother's sensitive to sunlight, yes. When we went to Las Vegas last December, I had to give her my sunglasses because she was complaining about the light.

Over the last couple of years I've tried giving her this supplement and that (hyaluronic acid, serrapeptase), but she doesn't stick to them and dismisses them as useless after only a couple of days (she thinks supplements should work immediately like drugs).

Mommybird, I'm sorry to hear about your sister. Have they made an actual diagnosis? We have one guy on the job who no longer can work because of this "mystery" illness that's sidelined him with various strange symptoms. After years and years of trying to diagnose, they more or less gave up and said it was chronic fatigue syndrome. It sounds like a fluffy disorder, but his symptoms are rather nasty, so they ought to rename that syndrome to better address the severity of some cases. I hope your sister's condition will improve!

[geohiker]

I have had Sjogren's syndrome for several years. I sympathize with people watching us with it - this is the dumbest "disease" with almost no good indications what it will do next. Bleh! Until I developed this, I had a feeling autoimmune diseases were just whiny people who needed some extra attention. I laugh bitterly now, as I have discovered how wrong I was!!! But, yeah, it sucks to have it and to have your own body be so unpredictable; and it must suck to be around someone who is so unpredictable. I'm lucky that I am a professor now (had to leave my 9 to 5; couldn't work in the brightly lit office and regular hours), and can find information to handle this on my own. I've found the battery of doctors to be supremely unhelpful and uninformed - if you can even find one who has heard of Sjogren's!

Having said that, I have been able to manage pretty well by taking a few basic steps. The first few years I was struggling with being in pain all the time, unable to tolerate much light at all, and the repeated flares. (Doctors, IMHO, are almost no help at all. They focus only on one small issue and ignore the big picture of making you feel better!) I was sick all the time, my hands were constantly in pain, everything hurt, and I wore my sunglasses 24/7. (Oh yeah, my husband was super thrilled with this development!)

The BEST thing I did was to start taking fistfulls of fish oil pills. Every day I take three 1200mg pills in the morning and three more at night. I have experimented around with lower dosages, but this is what works for me. Without all this, in a couple of days I'm in pain everywhere and a couple of days after that I'm in so much pain I can't get out of bed in the morning or use my hands well. So, swallowing a bunch of pills is TOTALLY worth it! This has really changed my whole life to a degree I can hardly explain. I was sick constantly, exhausted, in pain, slightly feverish, and just suffering; now - I'm not! I'm generally like a regular person! (who drinks water all day long and avoids bright lights, but...generally!)

The other biggie is to get the Restasis eye drops. Doctors love this, because they feel like they are doing something by writing prescriptions. They really do work though. My eyes are still very light sensitive, but now I can go to a grocery store without whipping on my sunglasses as I walk in the door, and can have more than one light bulb on in a room while I'm there, and can use my computer for more than a few minutes at a time (a necessity for my job!). I do still strive to keep lights as dim as possible most of the time, but am much better. Before using these I was using TheraTears eye drops and their gel, going through about a bottle a week. These are fine (NOT Visine or those kinds of drops), and I keep a bottle around for bad days, but they do not create tears like Restasis does. It does take a while for them to really work - a few weeks maybe - but I've been using them morning and evening for a few years now and they are GREAT!!

I'm sure your mom's eyes do hurt - a lot. When they are so dried out it is really painful. My eyes and mouth hurt every morning when I wake up; my first action is to reach for the eyedrops and glass of water on my bedside table. The Restais will really be a life-changer if she will use it! The dryness is also the problem with the light sensitivity. I wear prescription sunglasses, and when I bike or am out in bright light I wear those little-old-lady sunglasses "covers" that you can get at a drug store to wear OVER your glasses. I look somewhat like a dork, but it keeps out extra light and wind so the happiness I get is worth it! (I have terrible astigmatism and can not get wrap-around sunglasses made, but that would be a good solution also if possible! Whatever covers up the maximum amount of eye space is best.)

Less specific things that help me - if I get really tired and stressed, I have a flare which lands me in bed for a few days with the debilitating fatigue and overall "I want to die" feeling. (If you've had pneumonia, it's like that - but everyone thinks you are fine and should just get up and walk around like nothing's wrong! Frustrating on top of feeling like crap.) So, I plan my life carefully to avoid getting run down and not to get stressed out about things. This was surprisingly easy - developing some balance in life is probably good for everyone probably but being forced into it was definitely good for me!

Biking helps me out also - I can go out and peddle 50 or 100 miles and feel great afterward with all the nice endorphins, and the stress-release is probably also good! When I can't ride, I make point to do other exercising. I'm definitely not a health fanatic, and probably going too hard at anything would be counter-productive, but some activity every day helps. (Again - this is probably true for everyone!)

Oh, heat is a problem. Getting too hot for long sets off flares, so long hot showers are pretty much out of the question. (How long is too long? How hot is too hot? You pretty much know that when you are dizzy and unable to stand up after getting out of the shower - it was too much. If only it came with an instruction manual!) I don't use saunas and am only infrequently in jacuzzis. I also avoid hot weather like the plague! Air conditioning is a must!!

Going to the dentist for cleanings three or four times a year is probably good, if she's not already doing it. Dentists are the only medical people I've ever visited who know what Sjogren's is! Fortunately, I have not had the teeth issues I've read about with others, but I do sip water all day long and use Biotene mouthwash (expensive, but supposed to be good for dry mouths!) a few times a day. And I get my teeth cleaned at least three times a years.

And, I'll be doing all of these things for the rest of my life! Sometimes they will not work and I'll be sick and sad and feeling sorry for myself. But most of the time now, I'm essentially fine.

So, that's my own two cents.

Good luck to your mom! (And, to you!!)

[badger]

thank you for sharing your story, Geo!

It does sound like, compared to your symptoms, that my mother may have it much more "mild". I don't think she has flare ups, just the constant dry eyes/mouth.

Have you tried anything like acupuncture? Naturopath?

She actually doesn't have a doctor here; my parents moved back to Canada from Japan 4 years ago and she never bothered getting a doctor here. It's amazing how my father is so open to alternative therapies yet my mother is so dead set against it. She figures conventional medicine can't help her, how could anything else?

Although having said that, she did take to my suggestion of using a neti pot and she loves it. She also was given by my father's optometrist a fish-oil based formulation for moistening eyes and she did comment that she thought her eyes felt better. I will tell her about your success with high-dose fish oil regimen.

Thankfully she's a fitness aficionado so she often goes to the gym for aerobics and weights.

So it does sound like there isn't a whole lot out there for this chronic condition. My heart goes out to you and others who struggle with it on a regular, if not daily, basis. I selfishly hope that this isn't hereditary (though I hear it can be) and that I won't get it.

[geohiker]

Hope the info was helpful! (I feel like a big repository of Sjogren's information - which is not relevant to anyone I know, so it's nice to share some of my wonderful "insights" into it! )

It's really not a big deal for me the vast majority of the time, and once your mom gets the symptoms under control hopefully it will not be for her. It kind of sucks that there is no "cure" but once you get the dryness under control, that's pretty much most of the battle. And, all the stuff to do to keep them under control are things probably good for everyone anyway - drinking more water, controlling stress, balance in life.

[lo123]

I have sjogren's secondary to another autoimmune disease.

Eye drops.. I've never tried restasis, but I use OTC Refresh liquigel. It feels sooo good to put in. I also carry a bottle of water with me at all times. And chewing gum. Helps with the saliva.

I have no aversion to prescription drugs though because, well, they make my life bearable. I hope that if she's really suffering, she'll seek out medical treatment. Life's too short to suffer through it unnecessarily.

[runningteach]

I have sjogrens and lupus and probably had them both for over 10 years. It has slowly gotten worse. I deal with the dry eyes by using eye drops constantly and protecting my eyes with wrap around sunglasses. Restatis doesn't work for everyone, I couldn't take it. Eye drops that are preservative free are the best. Your mom should probably see an eye doc because your eyes can get damaged if they are dry. You can get scratches on the cornea. My eye doc has me clean the lids twice a day. As for dry mouth, using biotene toothpaste is good to use. I take a drug called Exovac and it helps me produce saliva. It has been a blessing because my teeth were breaking and it was hard to swallow food.

Sun sensitivity is common. Also being in the sun can cause flares. Your mom should wear sunscreen all of the time and try to avoid the sun as much as posssible.

You said your mom exercises. I find that if I do any exercising where I sweat a lot my eyes suffer the rest of the day. They dry out. It sucks but I won't give up my workouts. It is bad enough that I had to stop running. You should encourage your mom to see a doc. An eye doc can do a Schimmer test (spell) to see how many tears she produces. This tells you how dry your eyes are.

Jeannie

[merlin]

This Sjogren's thread is at least as interesting as the one where I found the $20 bibs! I don't know anyone else who has it. Cycling keeps me sane. --Well, sanity is a relative concept!

I was Dx'd about 5 years ago, but know I've had it for 20 years or longer. I searched for many years to find a Dx for the aches, dry eyes, photophobia and fatigue, which made me feel like a crazy person. At first, I thought that becoming a prune was due simply to menopause. Ahh no!

I take plaquenil for the aches and it helps, although the possible side effect is eye damage. Restasis did not work for me. I wear sunglasses outside, but am usually OK indoors. One of my least favorite aspects is the thirst which interferes with sleep. I can ride 20-30 miles, feel OK, then just need a day of rest. Fish oil is great stuff for all lubrication!

I have a new rheumatologist--old one left the practice. The new one does not seem to "get it," but he continues to write the plaquenil prescription. And he tests me for Non-hodgkins lymphoma, for which Sjogren's is a risk factor. My teeth are all cracking. Lots of dental work on the horizon. I knew about the increased risk of cavities, but not about the cracking, as related to Sjogren's. Now that all makes sense.
I could rant about the rheumatologist, but I won't. :-s The whole thing is not fun, but mostly I can manage it. Acupuncture helps with pain and general wellness.

Geohiker, et al. you have helped enormously! Badger, best wishes to you and your mom.

[Lesley_x]

I got diagnosed with this about 2 years ago. Unfortunately I'm only 22 though I actually took up cycling to combat the joint pain of sjogrens.

I use 2 different eyedrops. One is a gel for longer term use and one is a liquid drop for instant relief. I'm from the UK so this might not help but the gel is called Clinitas Hydrate/Geltears and the liquid drops are called Blink. Not ideal, but since I started using them (I was using nothing until that and really suffering, but nobody knew what to prescribe. Only going to a new optician got me on eyedrops) it has made my life a lot easier. It makes cycling really difficult as the wind dries out my eyes, even though I wear wrap around sunglasses.

For my mouth I use Biotene Oralbalance gel. But I so far have found dry mouth remedies to be pretty ineffective. The most effective thing is to carry water around all the time. It's a pain, but it makes life easier, particularly when eating.

It's good to get into a routine. I keep Biotene, water, eyedrops and a hand mirror beside my bed so I use them at night. I carry them all in my bag at all times. It sucks but you learn to cope.

It would be a good idea for her to maybe use a flouride mouthwash to prevent damage to her teeth?

Life is never going to be ideal with sjogren's but it really is about taking it a day at a time and not letting it drag you down.