Author Topic: Sjogren's 'must haves' list?  (Read 39355 times)

bigb00

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Sjogren's 'must haves' list?
« on: October 13, 2009, 05:13:59 PM »
So being newly diagnosed my one and only question is... What helps? Meaning.. What exercises, products, things to do and things to avoid make me feel better? Some doctors gave me some ideas or rules.. but I didn't really jot it down because it was a "iffy" diagnosis at the time.
I'm sure all of you will know best anyways!
I saw an post of "walmart finds" that made me wonder if this type of list existed.. and if not could we all get together and make one?

Things I'm wondering are:

Eye drops. What types? what to avoid in certain eyedrops?
Makeup. Mascaras? non flakie eyeshadows? Any of thoose hypo allergic types ok  or seem to work for most?
Lip care? which brands actually help our lips?
Moisturizers for face and skin? any brands or ingredients that are super good/ bad for Sjs?
Candies? Gum? - Someone made reference to Diabetic Candies or Sugar free hard lemon candies?
Drinks? Ie. Gatorate? For thoose electrolytes etc? I heard mixing Club soda with water will make your mouth feel better vs just water?
vitamins / minerals? - safe but helpful ones? ie Fishoil?

Anything else you may think or find helpful?

Ohiocat

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Re: Sjogren's 'must haves' list?
« Reply #1 on: October 13, 2009, 05:43:33 PM »
Eye Drops - you need to find the brand that works best for you.  For me it is Thera Tears during the day and Refresh PM at night.  But others on this site have stated they like other brands.  Again it comes down to what works for you; I had started with different brands, but ended up this Thera that worked for me.   

Once I tried a different type of tears, it was from refresh and it was a thicker drop, but turned out I was sensitive to something in it,  it turned the skin around my eyes red.   Looked like I had raccoon eyes only in red and not black.  Took me a while to realize it was the drops and took longer to get my skin and eyes back normal.  Had to go to more then just my regular eye Dr during that episode.

For Gum - I like the Orbit - sweet mint flavor; many of the other flavors just seem too strong now.  (something to do about the dry mouth that changes your tasting)  Whatever gum you find that you like, be sure that is is suger-free (not suger-less; which as I understand still has sugar in it).

I remember reading something on this site about avoiding candies that are citrus flavor.  Something about how the citrus can cause holes in your teeth due to the lower amounts of saliva.  I am not sure how accurate that is, but I do remember there was a discussion about that.   Perhaps searching for citrus on this site, it might come up.

As far as drinks, I very rarely have soft drinks (soda, pop) any more.  The caffeine in those drinks just seem to dry up the mouth more.  So I fall back mainly on water,  but taking small sips of water instead of drinking a lot at time (except when I am trying to eat!).  Pretty amazing for me to give up soft drinks since I use to drink it in the morning for my morning "coffee".  But any time I drink it now, I can feel the price that I am paying for it in how it drys out my mouth.

Can't help you with the makeup questions since I just never got into that.  (I am just a stubborn female who refuses to paint a face on regardless of what society thinks).
female 50+, no thyroid - levthyroxin 125mcg; Primary Sjogrens:  Dry mouth; Dry eyes-thera tears, Restasis twice daily;

Bucky

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Re: Sjogren's 'must haves' list?
« Reply #2 on: October 13, 2009, 09:21:04 PM »
Hi and welcome to our little (well, it's growing day by day) family of fellow Sjoggies.

It all comes down to a persons own personal preference as to what brands or products to use.  What works for one, doesn't for another.  I know it is head spinning to stand looking at the shelves at the store trying to "pick" out a product from thousands.

As far as eye drops - make sure they are preservative free.  I switch between Systane and GenTeal.

I'm still looking for the ultimate lip moisturizer . . . I usually just use vaseline or chapstick.

I don't use anything different makeup wise than I did prior to having Sjogren's.  Well, now that I think of it, the only thing I have changed is my mascara - the one I was using seemed to dry my eyelashes out.  I now use CoverGirl Professional All-in-one waterproof.

I like Suave Vitamin E Skin Therapy Moisturizer to help with the dry skin.  It doesn't make my skin feel greasy.

I drink a lot of water.   Like Ohiocat, soda/pop drys my mouth out - although, I do have one occasionally as I miss my caffeine fix since I don't drink coffee.   I also drink a lot of tea. 

I pop Altoids like they are candy.   ;D  They might be too strong for some, but I like them.   ;D  Wintergreens my favorite.  For me, I don't have to worry so much about the sugar-free stuff as I had my teeth pulled last year and now wear dentures.  :(

I would suggest a cool mist humidifier for your bedroom and or work space.  It helps keep moisture in the air while you sleep that helps with your nose/throat/eyes.

In a previous post from last year I know it was discussed that we tend to become more "sensitive" to smells / scents / odors than we use too.  I know for myself that perfume, cigarette smoke, some candles, etc. can give me an instant headache.  Even the smell of food can make me nauseous some times.

Hope this helps a little.

Bucky


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Patze

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Re: Sjogren's 'must haves' list?
« Reply #3 on: October 14, 2009, 04:48:07 AM »
Hi Bigb00,

Let me also welcome you to the SJS World!  Please do look around as you'll find a ton of information within oodles of topics.  And as you've seen, this is one of the friendlist boards around.

I understand what you mean about putting a list together, but as SJS is so individual, that list would be so long. ;) :D 

Let's see, eye drops I use several different products depending on how "dry" my eyes are at that moment I need to use them (and it changes depending if I another product is recommended (I have plugs in both the lower lids) - I'll try just about anything in search of relief).  I use GenTeal for moderate to sever dry eyes, Refresh Liquigel, Soothe & Soothe XP mainly. 

Like Bucky, still trying different lip products that are PABA & petroleum free to find a good match for me.  They're more expensive, but I started to dislike the feel of the regular chap stick types.

For makeup, I tend to stick with Almay, it doesn't seem to bother my eyes as much and I use regular mascara as the waterproof seems to bug my eyes more.

For moisturizer, I'm all over the place.  It really depends on how warm or cold it is, the warmer the weather, the lighter the lotion.  And the reverse, the colder it gets, the thicker the lotion - especially on the hands and feet - they get wicked dry some winters.

A humidifier is a great idea, and I have one in my living room and none in the bedroom as I use a CPAP with a humidifier already built in.

Smells drive my nose crazy and can bring on some awful headaches to migraines - not good.  Thankfully the folks in the office go easy on them and I normally have no problems with everyone's scents.

Oh, and I adore Altoids too, but peppermint is my choice, and don't much care for Wintergreen - sorry Bucky! :D

Again, welcome and hope to chat with you soon!

Take care -

Patze
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DragonflyC

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Re: Sjogren's 'must haves' list?
« Reply #4 on: October 14, 2009, 05:08:52 AM »
L'Oreal Double Extend Mascara creates tubes around your eyelashes that come off w/ warm water, but don't require harsh makeup removers and don't budge when you use eye drops.

Orbit Mist gum creates a "hydrating sensation."  My husband calls it "Sjogren's gum" because he says it creates too much moisture for normal people.

The most helpful for me, though, are the meds: plaquenil, evoxac, prednisone during flares, NSAIDs, and fish oil supplements.

wordnerd

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Re: Sjogren's 'must haves' list?
« Reply #5 on: October 14, 2009, 06:25:38 AM »
I recently switched to bareMinerals Flawless Definition Mascara because it is 100% pure minerals and has no dyes or other chemicals and I have a LOT of allergies.  I've gotten it in my eye and it doesn't hurt.

I switched entirely to their line of makeup when I realized that ALL of my makeup I had been using had a dye that I was allergic to in it.  My skin looks so much better since I switched and I no longer have little red allergic bumps all over my skin.  ;D

<3 Lauren

ohiolady

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Re: Sjogren's 'must haves' list?
« Reply #6 on: October 14, 2009, 07:01:57 AM »
TheraTears preservative free drops for day, along with a few drops of FreshKote and Genteal Gel at night.  I have plugs, use Restasis and lacriserts occasionally.  I wear moisture chamber glasses to protect my eyes while outside.  Dryeyezone is a great information site for dry eyes.

I use Cetaphil for face and body.  I buy the thick cream in the jar with the blue lid.

I use Vitamin E stick you can purchase at Walmart in the vitamin section for my dry lips

I use any of the Lancome waterproof mascaras.

I take Evoxac for my dry mouth, trident gum and Ricola, mountain herb, sugar free drops, they are not too sweet.  I use oralbalance gel at night.  I put it in my retainer and it stays around for awhile.  I sip water all day long.  I use Pronamel toothpaste and Biotene Moisturizing mouthwash.

I use a humidifier in my bedroom every night all year long.

Hope this helps.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 62

Blue Kat

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Re: Sjogren's 'must haves' list?
« Reply #7 on: October 14, 2009, 10:43:06 AM »
For dry lips, I've found that Kiehl's #1 Lip Balm does the best for me.  Second only to that is Burt's Bees beeswax lip balm.

bigb00

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Re: Sjogren's 'must haves' list?
« Reply #8 on: October 14, 2009, 04:24:43 PM »
WOW!! this is fantastic! a great help for newbies! Thanks guys!

warmwaters

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Re: Sjogren's 'must haves' list?
« Reply #9 on: October 14, 2009, 07:51:01 PM »
Great thread - I'm a newbie too, so I don't have a lot of advice.

Except,

I find seltzer water quenches my thirst much better than regular water. And I've just bought a few water containers to carry, instead of using  bottled water. If I through a few ice cubes in them before I go out, and then fill with water, they are cool when I am done running an errand, and want a drink.

Primary Sjogrens, dx June 2009, Immunoglobulin deficiency, axial spondylosis arthritis, IBS, autonomic neuropathy
Omeprazone DR 40 mg, mobic 15 mg, Plaquenil, LDN, B1, B6, B12, D, fludrocortisone, gralise, various inhalers

Calli66

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Re: Sjogren's 'must haves' list?
« Reply #10 on: October 14, 2009, 08:05:09 PM »
I like Spry mints (in lemon, too) and Spry Gum. They contain Zylitol which is a "good" sugar for the saliva and mouth. It not bad for teeth. I like it that they don't use Aspartame in any of their products. http://www.xlear.com/spry.aspx.

Calli

voiceteacher

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Re: Sjogren's 'must haves' list?
« Reply #11 on: October 15, 2009, 06:13:13 AM »
I asked a local pharmacist (one who mixes meds, not just fills prescriptions) to make a lip balm for me that would stay on.  He came up with one where the base is bees wax but I don't know what else is in it.  It's expensive - I had him make me 10 and they were 4.00 each but they stay on for hours - my lips are so much better.  I never tried Burts Bees but I wonder if that wouldn't be the same yet cheaper.  Has anyone tried that?  My lips are actually in great shape now that I've had this stuff.

Voiceteacher

Bucky

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Re: Sjogren's 'must haves' list?
« Reply #12 on: October 15, 2009, 06:23:29 AM »
Voiceteacher,

I've tried the Burt's Bee lip balm and didn't like it.  It made my lips burn.  :(  Guess I'm just too "sensitive".   ;D

Bucky
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Katybarstool

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Re: Sjogren's 'must haves' list?
« Reply #13 on: October 15, 2009, 01:57:43 PM »
Voiceteacher

I found some Burts Bees recently, and I reall like it. It cost me ?4 or so, but is definitely worth it.

Kathyx

bigb00

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Re: Sjogren's 'must haves' list?
« Reply #14 on: October 15, 2009, 05:07:10 PM »
weirdly enough..  i was researching some of the eyedrops and found this

http://www.tearsnaturale.com/tears-naturale-bion-tears.asp

bion tears actually MENTIONS sjogrens right on its main page..
hmmf.