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Sjogrens Topics => Living With Sjogren's => Topic started by: bigb00 on October 13, 2009, 05:13:59 PM

Title: Sjogren's 'must haves' list?
Post by: bigb00 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?
Title: Re: Sjogren's 'must haves' list?
Post by: Ohiocat 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).
Title: Re: Sjogren's 'must haves' list?
Post by: Bucky 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


Title: Re: Sjogren's 'must haves' list?
Post by: Patze 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
Title: Re: Sjogren's 'must haves' list?
Post by: DragonflyC 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.
Title: Re: Sjogren's 'must haves' list?
Post by: wordnerd 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
Title: Re: Sjogren's 'must haves' list?
Post by: ohiolady 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
Title: Re: Sjogren's 'must haves' list?
Post by: Blue Kat 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.
Title: Re: Sjogren's 'must haves' list?
Post by: bigb00 on October 14, 2009, 04:24:43 PM
WOW!! this is fantastic! a great help for newbies! Thanks guys!
Title: Re: Sjogren's 'must haves' list?
Post by: warmwaters 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.

Title: Re: Sjogren's 'must haves' list?
Post by: Calli66 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 (http://www.xlear.com/spry.aspx).

Calli
Title: Re: Sjogren's 'must haves' list?
Post by: voiceteacher 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
Title: Re: Sjogren's 'must haves' list?
Post by: Bucky 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
Title: Re: Sjogren's 'must haves' list?
Post by: Katybarstool 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
Title: Re: Sjogren's 'must haves' list?
Post by: bigb00 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 (http://www.tearsnaturale.com/tears-naturale-bion-tears.asp)

bion tears actually MENTIONS sjogrens right on its main page..
hmmf.
Title: Re: Sjogren's 'must haves' list?
Post by: Patze on October 15, 2009, 05:30:19 PM
I'm with ya on the beeswax lip balm Bucky, can't use it either because it tends to make my lips swell and it stings too (allergic to any insect bites/stings/venom).

Patze
Title: Re: Sjogren's 'must haves' list?
Post by: voiceteacher on October 15, 2009, 05:47:05 PM
hmmmm, mixed reviews on Burts Bees - - perhaps I'll just stick with my expensive stuff from the pharmacy!!  Hope everyone is having a great night - I'm exhausted and going to bed early - 8:00 to be exact :)

Voiceteacher
Title: Re: Sjogren's 'must haves' list?
Post by: lynnmarie219 on October 15, 2009, 07:24:04 PM
Some of the products I use and like are Bare Escentuals/Minerals make up....the whole line is very light and natural including the Prime Time which is a foundation primer..it doesn't even feel like you are wearing make up because its so light and allows your skin to breathe and does not have a lot of harsh ingredients as in some of the others. The main reason I wear makeup is to cover some of the redness on my face because I have rosacea...so this is perfect for that!

I also uses Cetaphil skin products...mainly the Daily Facial Moisturizer and Lotion...they work great and were recommended to me by my dermatologist as there isn't a lot of "junk" added to it and works well with sensitive skin.

Biotene dry mouth products work well...Ive used the toothpaste and the mouthwash and liked them both...a little pricey....but if its helps....I'll still go for it!

I haven't found a good lip moisturizer either that I really like...I have a ton of them around the house and in my purse that work ok...but many of them like the Burts Bees or any that have any menthol in them really burn my lips and break out the skin around my lips. So I'm still searching for the perfect lip balm!

Keep the ideas coming...good thread!
Title: Re: Sjogren's 'must haves' list?
Post by: ohiolady on October 16, 2009, 06:34:35 AM
LynnMarie,

Have you tried the Vitamin E stick at Walmart, located next to the Vitamin E tablets?  I, like you, break out with most of the lip balms, too irritating.  Hope this helps.

Anna
Title: Re: Sjogren's 'must haves' list?
Post by: lynnmarie219 on October 17, 2009, 02:05:16 PM
Hey Anna,

Thanks for the idea....Ill look there the next time I'm at the store.

I appreciate the suggestion!
Title: Re: Sjogren's 'must haves' list?
Post by: bigb00 on October 20, 2009, 04:37:22 PM
I bought a lot of helpful products. I bought some burts bee's. Nivea soft kiss & Aveno moisturize stick. I find the aveno is amazing! Burts bee's is OK.
Nivea isn't as great of a moisturizer, But has a nice sheen to it so would be good when going out vs other lip products that dry you out. Couldn't find the vitamin E stick :(.
Bought Vaseline intensive rescue lotion & problem skin therapy cream in the Vaseline brand.
Thera tears & refresh PM ointment. I wanted to buy Bion tears ( as they mention sjogren's right on the BOX! ) but NOT in the individual tubes as I use these about 5x a day? Does Bion make bottled drops?
Also was told by a Physician I work with to put Vaseline AROUND my eyes. As it makes your eyes feel less dry? I tried it and it seems to work? Anyone else try this?
Title: Re: Sjogren's 'must haves' list?
Post by: SonyaR on October 20, 2009, 04:52:28 PM


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

Bucky


Bucky

I just recently found the most wonderful lip moisturizer!  If I would have known how great it was I would have bought all they had.  I did find it on the internet so I will be able to order more.  I put this on my lips before going to bed and my lips are still moist in the morning!  I haven't had chapped or dry lips since I bought this wonderful stuff.  Plus it is an SPF 20.  It is called Ballmania and the container is ball shaped.  If you google it you will find an order site. 

Sonya
Title: Re: Sjogren's 'must haves' list?
Post by: HL in NY on October 21, 2009, 04:44:10 AM
Thera tears & refresh PM ointment. I wanted to buy Bion tears ( as they mention sjogren's right on the BOX! ) but NOT in the individual tubes as I use these about 5x a day? Does Bion make bottled drops?

Here's the deal with the individual tubes vs. bottles.

Most of us have been told by our lovely ( ::) ) doctors that if we use eye drops more than 2 or 3 times a day to get the 'preservative free' versions, because all those preservatives are 'not good' for our eyes.

Hence the little tubes, since a regular sized bottle without preservatives could go bad and lead to infections blah blah blah. Most of us use the little tubes, which does cost more. It's one of those special 'Sjogren's Gifts'.

My suggestions is Aveeno daily Moisturizing lotion. THe one with the green cap. It's fragrance free and helps my oh, so dry skin without irritating it.

Hoping the best for you,

Heather
Title: Re: Sjogren's 'must haves' list?
Post by: ErinG on October 21, 2009, 09:41:03 AM
For drops I've tried most (Bion tears, Refresh, Celluvisc, Genteal, Systane), but now I use Optive because they cause the least amount of residue on my contacts.  You really just need to try a bunch and see which one works best for you.

I also use Aveeno daily moisturizing lotion.  This seems to work the best for me, it's not greasy and it really lasts all day.  Now that it's getting colder and my skin is getting drier, I've been looking for a good hand cream that isn't scented or greasy.  The ones I have have fragrance in them, and I always manage to touch my eyes and get it in them and they start to burn.  Any suggestions?  Also in the winter, for the really dry patches of skin I always seem to get on my hips, I use cocoa butter.  For my face I use Clinique Dramatically Different Moisturizing lotion.  I have been using this for over 10 years and it works better than any other face moisturizer I've tried from the drug store.  It runs around $25 for 4oz at department stores (Macy's), but it almost always comes as a trial size in the "free gift" offers when you purchase a certain $ amount of product.

For lips I use Lypsyl lip balm.  It is a beeswax lip balm similar to Burt's Bees, but I think it is much smoother and not as harsh/minty as Burt's.  The only place I have found this so far is Walgreen's.  At night to keep my lips from cracking when the air is dry, I use Blistex medicated ointment (in the white tube) and I put Aquaphor on top of that.  I think Vaseline would work just as well as Aquaphor.

I primarily drink water.  My dentist said I should not drink soda because the sugar and acid can accelerate tooth decay, which is exacerbated by the dry mouth.  Sometimes if I want soda I'll have seltzer instead.  If I want something with flavor I usually have the lower calorie Gatorade (G2).  I don't drink anything with caffeine anymore.  I tend to chew sugar-free gum (Trident) most of the time.  When I'm not chewing gum, I'm eating!  Or I just tried the new Halls Refresh drops which work pretty well.  They are sugar-free, I like the mint the best.  My rheumy prescribed Numoisyn lozenges for my dry mouth but I prefer chewing gum or the sugar-free candy.

Title: Re: Sjogren's 'must haves' list?
Post by: coopwall on October 26, 2009, 06:40:20 AM
Dear Newbie,
Not many have mentioned dry nose.  I have this big time.  I use Nasalcrom 4 x a day, but recently my Dr. intoduced me to NeilMed Spray nose gel-- It's great, too.  Also good is Ayr saline gel in a tube.  I use that at bed.

Salese is a great lozenge created specifically for dry mouth.  I get mine from my dentist, but it is not an RX.
 
My husband is astounded by the many otc drugs and preps that I use.  But they keep me pretty comfortable, so to me, the time and expense is worth it. 

I have humidifiers for the house, because I'm in a dry climate.  Just recently put an air purifier in my bedroom--love it.

Good luck to you.  Look forward to your posts.

coopwall

Title: Re: Sjogren's 'must haves' list?
Post by: Nans on October 26, 2009, 09:01:37 AM
A few days ago, I was outside painting on a windy day.  That evening, my eyes were really bothering me - especially the left eye.  I am still rather new to dry eyes and need to remember to wear eye protection on windy days.  8)  The left eye bothered me for two days after - it felt like something had poked it.  Also, the artificial tears I use during the day just didn't do the job at night.  I had seen Genteal Gel mentioned here several times so gave it a try.  My eyes felt much better the next morning, and my left eye did not hurt anymore.  :D  It makes things pretty blurry but it is very soothing.
Title: Re: Sjogren's 'must haves' list?
Post by: Patze on October 27, 2009, 04:31:50 AM
Hi Nans, got to love windy days and no eye protection.  ::)  But I'm sure glad to see that GenTeal is helping!

Hi Coopwall, yeah, I know what you mean about the dry nose!  Mine gets so painful during the fall/winter seasons...ugh.

Take care and have a great day!

Patze
Title: Re: Sjogren's 'must haves' list?
Post by: ~elizabeth~ on October 27, 2009, 04:50:22 AM
Re. make up, I can't wear it at all. I used to use clinique's hypo-allergenic 'almost makeup' foundation, but gave it up when I was having recurrent ulcers/blephoritis in my eyes, which did improve a lot when I stopped makeup completely.

I used to use Hypromellose eye drops, but although they are initially soothing, I found they tend to cause more irritation after a few days use so I don't use anything. I do run a bath sometimes to humidify the air in the house, which seems to help a little.

The best oral product is Biotene oral balance gel. It lasts a reasonable time, far longer than any of the other rubbish sprays that the dr prescribed, and is pleasant to use.

Dr prescribed some nasty gum arabic lozenges, which were no use whatsoever; they were actually to hard and abrasive for my sore mouth. Chewing gum is much better at stimulating salivation, but I've had to stop as it's aggravating my teeth, already damaged/sensitive from jaw/tooth grinding.

I can't eat or drink any thing acid at the moment at all. I hardly touched fizzy drinks in the last 20 years. The acidity problem is a pain, as I'm quite a serious fruit grower with a lot of land devoted to it, and have boxes of pears all rotting that I can no longer face eating, which is really depressing me.
Title: Re: Sjogren's 'must haves' list?
Post by: coopwall on October 28, 2009, 06:48:47 AM
This is a very interesting and useful discussion of helpful produts!!

I'll add Amlactin Lotion to the list. Recommended by my Dermatologist, it is  Excellent for all parts of the body.  Expensive ($22 at Walgreen's), but worth it.
It helps soothe the scaly keratosis spots that i have --not sure if those are from SJS or from my Dad?!?

When I travel by air, there are hardly enough baggies to hold all my gels, drops, creams, etc!!

Coopwall

Title: Re: Sjogren's 'must haves' list?
Post by: kwolfsheimer on October 28, 2009, 11:16:43 AM
I use the Thera Tears preservative free and Gen Teal at night. I  use the Restassis and also Zaditor drops, a nonprescription antihistamine for your eye.  The Zaditor doesn't help much, but evidently i have allergies that compound my eye dryness.  I also put a hot washcloth over my eyes right before I go to bed.  I need to get a humidifier. 

I don't have the super dry mouth yet, but I do have severe chapped lips.  I swear by Beauti Control- they have a two part lip care bottle that has "lip apeel" a zink-like compound that you rub over your lips and let dry, then you just wipe off the dead skin.  On the bottom is a vial of lip moisturizer.  I think it is Vaseline-based but works like nothing I've ever seen.  You have to find a Beaui-Control rep in your area but you can go on their website.

I also keep Burt bees chapstick in my pocketbook which is OK. I would recommend Avon's Moisture Therapy chapstick over that.
Title: Re: Sjogren's 'must haves' list?
Post by: wallaby on November 23, 2009, 07:55:07 AM
I have had dry peeling skin on my fingertips for years.  My Dr recommended the Eucerin cream that comes in a tub.  I works pretty well for my fingertips, put I have also been putting it on my lips nightly for years - even before SjS.  I haven't had chapped lips in years, and that includes 4 years in North Dakota!   :-*

Other than that I am pretty new at this myself.  I have added a vitamin B complex and fish oils to my daily routine.  My M-i-L recommended keeping the fish oil caplets in the fridge/freezer as they don't repeat on you so much.  So far she seems to be right!

I also use rewetting drops during the day.  Rephresh gel at night (although I am not sure how well it is working), all the biotene products and a humidifier.
Title: Re: Sjogren's 'must haves' list?
Post by: Epson on November 23, 2009, 08:02:36 AM
On top of the "must have list" has to be a sense of humor and a knowlegable doctor that listens to his patients, good luck with the latter. ;D
Title: Re: Sjogren's 'must haves' list?
Post by: Bernice on November 23, 2009, 08:50:42 AM
Vaseline for most everything- it's great!
Eyes: Dryness - Unisol 4, though it's kind of hard to find and another product I can't think of that works great, long lasting too. the Optimum produts are by far are the best products for lens

I agree with Epson!
Title: Re: Sjogren's 'must haves' list?
Post by: lainier on November 23, 2009, 12:55:09 PM
Bion Tears
Refreshgel
Saline nasal spray
Biotene Oral Balance mouth gel
Saliva Sure lozenges for dry mouth
Badgers Lip Balm
Modedevie Shea Butter Unscented Body Lotion
Marcelle Body Lotion
Vicks personal steamer
Dark Eye covers from London Drugs
Gel Eye packs (the kind with eye holes cut out) refridgerated or freezer for 1/2 - I wear while watching t.v
Clickable hand warmers - I put them on my eyes before bed
Dark curtains
Tylenol for eye pain
Sunglasses (Bolle pink lenses)

That's all I can think of for now but I am sure there are more!
Great idea by the way, asking people to list off their essentials.

Title: Re: Sjogren's 'must haves' list?
Post by: voiceteacher on November 25, 2009, 04:28:47 AM
OK, I've not read this thread for awhile - what are Saliva Sure lozenges ??

Voiceteacher
Title: Re: Sjogren's 'must haves' list?
Post by: syl on November 25, 2009, 06:09:26 PM
Hi,
 The only lotion that I have bought time and time again is Gold Bond. You have to cut the bottle to get the last couple of ounces because the pump doesn't go down all the way and it is too thick to just try to pour out.
  Happy Thanksgiving!   Sylvia
Title: Re: Sjogren's 'must haves' list?
Post by: lighthouse33 on December 17, 2009, 02:53:21 PM
Soothe XP Eye Drops and Preservative Free Thera Tears, tranquileyes
Biotene products for the mouth and teeth
Cetaphil for dry skin
for carpal tunnel - IMAK Smart Glove Carpal Tunnel Brace - also for arthritis, tendonitis and hand fatigue
                           for nightime - Wellgate for Women Memory Foam Wrist Support
Title: Re: Sjogren's 'must haves' list?
Post by: Bucky on August 27, 2011, 11:37:52 AM
Since we've had a bunch of "newbies" lately, I thought I would bump this thread back up on top.  It has a lot of helpful information in it from our members.  You might find something worth trying listed here.

As with anything else, what works for one, might not work for you.  We all have different sensitivities to products and smells.  You might have to try a few things to find what works for you.

Bucky
Title: Re: Sjogren's 'must haves' list?
Post by: lighthouse33 on August 27, 2011, 12:51:45 PM
Earthing Universal Bed Pad

After using this for over a month I have less

pain and inflamation
I can sleep through the night
I can lift and trim my toe nails without pain
a rash on my chest has disappeared
my carpal tunnel is mostly gone along with the pain in my right bicep
Title: Re: Sjogren's 'must haves' list?
Post by: Danielle28 on August 27, 2011, 04:47:40 PM
Does anyone have problems with dry and cracking heels? I mean they get bad, sometimes they split and hurt really bad. I've tried different things but nothing had really seemed to help.
Title: Re: Sjogren's 'must haves' list?
Post by: Kaila575 on August 27, 2011, 07:11:14 PM
I did had the dry and cracking heels and the burning feet sensation especially on the upside...I use palmers oil or vaseline...on it and it helps quite a bit...I recently moved to Hawaii from California as my doctor's have recommended it...I also have the burning eyes and my hair falls out a lot but I still have a lot of hair...taking plaquenil 200mg....I am going to try to go to work at least part time and also take a graphix design class on line..hope SJ doesn't try to get in the way of it....it's better now...my heels and feel look a little better now...I drink pedialite and lots of water as well..which helps me some what...nice to meet others who have similar battes...has anyone heard from Navy Dad he was an inspiration to me when I was fighting for my life...and wanted to give up he was very encouraging in spite of what he was going through...He really has a very strong presence on this site..at the time I was only a guest browsing the forum....prayers for all of u on this site....Nohealani we are not alone in the fight...just remember that...."I finally wanna live again" there was a time I didn't want to fight this pain anymore and I felt totally abandoned by everyone and everything I knew....it was like it was all slipping from my hands....
Title: Re: Sjogren's 'must haves' list?
Post by: 4Kids on August 27, 2011, 07:27:40 PM
Restasis for eyes
Systane Ultra drops for day
refresh gel, night or before the beach/lake/hot day

Saline nasal spray for dry nose
Saline gel. For nose

Biotene toothpaste and mouthwash
MouthKote artificial saliva
Biotene oral balance gel
Saliva sure drops
Excel mints

Nystatin trouches for thrush
Liquid diflucan
Pill form diflucan

Cod liver oil
Vitamin e
B vitamin complex incl B-7

Hmmm. I use natural bath products from a company called SkinDecent. They are all natural. I don't have drybskin unless I use a soap product.

I use lipbalm in a pot, what te heck is it called. Or natural ones from SkinDecent.

I use MAC makeup. And baby wash on my eyes.

That's it. How depressing.
Title: Re: Sjogren's 'must haves' list?
Post by: Meld256 on August 27, 2011, 09:42:03 PM
Bucky,
Thanks for moving this up; it's a great thread,  ;)

Everyone will have their own list, but there's good info. here.  Especially for those new to these issues.

Kaila,
If I've not welcomed you, allow me to say "Welcome!"  ;) I hope you'll find lots of good info. and think you'll find friendly, helpful people here. I'm so glad to hear you are in a better place emotionally.  It can really take some time and work to do that, so good for you!
If you didn't see a post earlier, NavyDad changed his name and now is "Really?" And yes, he's been an inspiration to many of us. He's not been feeling well at all lately, so we wish him hope and blessings.
Take care of yourself.  We're glad you're back!

Melinda
Title: Re: Sjogren's 'must haves' list?
Post by: jmkboyer on August 31, 2011, 08:44:00 PM
Thanks Bucky for bumping this list back up!  It's very helpful.  I haven't been lurking lately because school has started and my last is in kindergarten this year.  Yay for me (at least it will be once he gets used to the long day.  Now he comes home and falls apart.  Good times.)

Danielle--for the heels, slather Aquafor on them right after you get out of the shower or bath.  Then put on socks for the rest of the morning/evening.  It works miracles.

I also like aquafor for my lips.  It seems to be one of the few things that keeps them moist for a little while.

MB--who gets to go nurse a root canal with vicodin.  Woo hoo!  :D
Title: Re: Sjogren's 'must haves' list?
Post by: irish on September 01, 2011, 09:37:03 PM
Danielle, I use "Blu Goo" that is found at Walmart. I think it is in the dept where you will find creams for feet. If not ask the staff and they will find it for you.

I came in a very small round jar for about 2$ and I have since seen it in a larger jar for about 4$. It contains emu oil and papaya and is very, very good at softening and slowly debriding that dry hard tissue. It is very, very oil and it doesn't take much to work.

Don't try to take a finger full of this ointment as that is too much. Just rub your finger over the ointment and you will get enough to spread on your feet. You will have to rub the ointment many times to cover your feet, but it is well worth it. Sometimes I put this stuff on during the day and then put on socks to prevent it from smearing all over.

It works really great around the nails where one gets so sore. Good luck. Irish ;D
Title: Re: Sjogren's 'must haves' list?
Post by: quietdynamics on September 01, 2011, 09:50:35 PM
Does anyone have problems with dry and cracking heels? I mean they get bad, sometimes they split and hurt really bad. I've tried different things but nothing had really seemed to help.

I never had dry, cracked heels before, but got it last winter.  I used liquid band-aid (think crazy glue for skin) to hold crack together and allow it to heal. And use a cream from Walmart for Diabetic foot care.   Scrape off dry skin after soaking, then pumice smooth, then cream and socks.  For dry body skin I use a sloughing mit in the shower, pat body with a towel, then put virgin olive oil on...it will absorb and not be oily. I put some in a pretty soap dispenser in the bathroom and just need a few drops.

 Hope this helps.
Title: Re: Sjogren's 'must haves' list?
Post by: 4Kids on January 21, 2012, 05:03:05 PM
bump for updates and new people!
Title: Re: Sjogren's 'must haves' list?
Post by: Duchess on January 23, 2012, 11:08:26 AM
Hey, this is good for older members also.

Some that I like are:
Amlactin lotion
 for when my skin is really dry, itching & burning.

Eucerin Cream

Organic Extra Virgin Coconut Oil

Olive Oil

Biotene mouth wash and toothpaste

NeilMed Products

Vitamin B 12

Omega 3 fatty acids

Shea Butter (solid)
  Easier to use if you soften or melt it.

I'll think of more later. Darn brain fog!

One thing though, when applying moisturizers to your skin/lips, wet them, then apply moisturizer. After a bath, don't towel off all the way - apply moisturizer within 3 minutes for best results.


Duchess

Title: Re: Sjogren's 'must haves' list?
Post by: susanep on January 23, 2012, 07:30:31 PM
I don't have a lot to add, but I have enjoyed reading everyone's ideas or what has helped them.

I use the eye drops, Systane and Restasis. Ayre nasal spray, and the gel when I have the nose sores.

I always have to use moisturizers all over. I use moisturizer before putting on any makeup. I use light makeup unless I am trying to cover up a bad day on my face.

I always use different things on my lips. Medicated lip balms of all kinds. I bought a new tube of something the other day that I hadn't tried before, but I forgot what it is called. I need some moisturizer for my brain.  ::)

I have always loved using nail polish, face powder, eye shadow, and lip stick.

 As a teenager I always used mascara, and loved it, but just recently bought me a tube of mascara which I haven't done in years. I was afraid too, because of my dry eyes and how easily they would get irritated.

Some of you brought up some good ones to try, but what do some of you do that is my age when your eye lashes have become much thinner? To compensate I had been using eye liner for upper and lower eyes to enhance them more. (we are still female after all)  8).....and I am just kidding with those who always wore makeup.

When I was looking at mascara at WalMart it was funny when I come across the new kinds that said they have chemicals in them to help grow your lashes. I thought no way do I need anything new playing around with my body chemistry.

I also have many little lap blankets for when I chill, plus all my new footsie things to keep my feet warm.

I have lately thought of wearing a little pair of cheap gloves while watching tv, because my hands can feel cold, and my hands have started aching more, and the finger tips swelling and red.

I keep a mouthwash that contains peroxide in it, and just got another prescription for swish and swallow, and the miracle mouth wash that the pharmacist compounds together in a bottle. They help with the mouth ulcers that are so painful.

My hair seems to be getting thinner, I am not sure. I am a mess. lol..., but my dear husband says I am his mess.  :)

I can tell that I do better in the summer as long as I stay out of the sun, and hydrated.

 This cold weather has slowed me down more, and I have ached Like one continuous flare. And, the house is always drier. However, I am not having to mow grass.  ;) Actually, I usually enjoyed mowing the grass. Seeing all the green, and having my own time to just kind of think away from everything else. (lots of sunscreen, my water bottle, and my big floppy hat)

For all the newbies ((extremely important)), you must find ways to eliminate as much stress as possible.

Take Care Everyone
God Bless
susanep :)



Title: Re: Sjogren's 'must haves' list?
Post by: 4Kids on May 11, 2012, 12:59:57 PM
bump again for new people. Don't get overwhelmed, just read through and flag what might help your symptoms!
Title: Re: Sjogren's 'must haves' list?
Post by: 4Kids on May 11, 2012, 01:02:38 PM
I forgot. I use Nature's Essence Tea Tree Oil toothpaste in Wintergreen w Neem.  It has changed my life.  In addition to being gluten, fluoride and sls free, it has got rid of any "straggler" thrush and I am off diflucan, off the nystatin, and when I see pink patches after eating cinnamon buns or something  :-[ then I take my Critical Care probiotic and brush my teeth and I am STILL good.

Wonderful stuff.  I did try other Nature's Essence toothpastes in Ginger and Fennel, as well as Xyliwhite w Tea Tree Oil and their anti-fungal properties do not seem as good as the Wintergreen W Neem.

If you have burning or a pepper intolerance, give these toothpastes a try.
Title: Re: Sjogren's 'must haves' list?
Post by: SunshineDaydream on June 09, 2015, 07:03:32 AM
Bumping this thread full of a lot of very useful information to the front page.
Title: Re: Sjogren's 'must haves' list?
Post by: Nomad on June 09, 2015, 08:05:22 AM
Ironically, I was just going to post about needing something for my dry lips. And I see here that the Burt's Bees doesn't  work for everyone.

Anyone have anything that they truly like a lot for dry lips?

I don't know if it was mentioned that it is often wise to get preservative free eye drops.

Does anyone know if caffeine is bad for our teeth? I know soda is very bad, because of the sugar. I'm avoiding sugar and almost all junk food. But, what about things like coffee????

Other than coffee, I sometimes drink tea and I do drink lots of water.

For dry feet, I like Deep Healing Foot Cream (thank u Carolina) and I also like a foot cream made by Origins that comes in a green tube, but it's expensive...I use it now and again. I now have to use foot cream nightly or I'm in trouble.
Title: Re: Sjogren's 'must haves' list?
Post by: CaliSjogrenMale on June 09, 2015, 08:26:54 AM
For those of use that like to get outside and ride bikes or hike etc.  I recently purchased a pair of Wiley X prescription sunglasses with a removable facial seal foam insert to completely protect my eyes from the elements (wind, dust etc). They also come with a removable strap that holds the glasses snug against your face for a really solid seal.  With these I'm able to get out on my road bike comfortably without destroying my eyes.  If you don't need prescription lenses these are really reasonably priced and less than Oakley.  A must have for me. 

wileyx.com/EcommSuite/ProductListing.aspx?ActivityCode=FISHING&SeriesCode=554
Title: Re: Sjogren's 'must haves' list?
Post by: Deb 27 on June 09, 2015, 04:59:26 PM
For the face, I like mostly Dermalogica cleanser for sensitive skin. It's very cool and soothing, kind of gel like. I like their moisturizer with SPF 30. I wear the Bare Minerals make up with Lorac concealer for my monster circles.  I have to use this stuff b/c other brands really bother my eyes. Even some make up will make my eyes burn. If I wear eye shadow, it's a mineral based one. I like Beauti Control products as well. I get this stuff on Ebay and Amazon to save some $$.

For lips, any lip gloss will work for me or chapstick.

I like the 24 hour Lubriderm or Eucerin products for the body.

I chew a ton of Trident Bubble gum flavor. The mint would make my mouth burn.

I drink a ton of water as well.


I use restasis eye drops and Refresh tears, preservative free.

 I also use Ayr nose gel. My nose gets horribly dry and often bothers me more than my eyes and mouth!!

I also recently got a cool air humidifier for the bedroom. I think it's making a difference. I honestly do not find that caffeine drinks dry me out all that much. I sometimes drink some tea or one diet soda a day max. I try to drink at least 8 glasses of water to keep UTI's at bay.

 For hair, I like macadamia natural oil products for my dry hair-:)
Title: Re: Sjogren's 'must haves' list?
Post by: SunshineDaydream on July 26, 2015, 12:00:57 PM
Bump for new members.
Title: Re: Sjogren's 'must haves' list?
Post by: Judie P on July 27, 2015, 07:37:30 PM
I use the Burt's Bees lipbalm, too.  It seems to work for me.  Oddly enough, seltzer water works for me, too.  I was hooked on Systane for my eyes until I ran across a natural product from Boiron called Optique 7.  I find it soothes so much better and does not make me as blurry after I use it.  It is a little pricey but I usually get it when it is on sale at a local grocery, natural foods store.  They have this 25% off all beauty and vitamins three times a year.  If I purchase $100 worth of anything, I get an extra 15% off.  I just stocked up on Optique 7 last night.  Now if I can only get the hang of getting the drops in correctly instead of below the eye.  LOL
Title: Re: Sjogren's 'must haves' list?
Post by: A66eyroad on July 28, 2015, 08:58:02 AM
I swear by Nivea's "A Kiss of Smoothness" in the blue tube. It's usually next to the Chapstick -- which actually makes my lips worse.

I keep of tube of the Smoothness in my desk drawer at work, in my purse, on the end table next to the bed, in the drawer next to "my side of the couch" and I always have an extra in the bathroom, just in case!
Title: Re: Sjogren's 'must haves' list?
Post by: Suslew on August 02, 2015, 06:39:32 PM
After trying so many lip balms and finding so many to be drying, I've found that Shea butter formulations work great for me.  Beeswax and some of the others just don't cut it. 

A new fav is Alaffia red palm and Shea lip balm.  Not sure it's easily found, got mine at local "whole foods" type store.
Title: Re: Sjogren's 'must haves' list?
Post by: grammad97 on August 04, 2015, 09:01:06 AM
Here's my go to list for products I use -
Refresh Tears and Refresh Liquidgel - I get store brand comparable to these from Wal-Mart or Walgreens.
Spry for hard candy or gum for mouth
Saline nose spray for moist clean nasal passages
Physicians Formula Organics mascara- no chemicals/ etc. and washes off with warm water
Amlactin lotion or Cream- it's expensive but SO worth it and COSTCO sells huge bottle at great price and it lasts several months
Dove- moisturizing body wash
Any brand co-wash (cleansing conditioner) my hair was dry like straw before this product helped it
Burts Bees- coconut pear lip balm
Title: Re: Sjogren's 'must haves' list?
Post by: A66eyroad on August 04, 2015, 01:05:23 PM
I meant to add that I dab a Q-tip smeared with coconut oil inside my nostrils in the mornings. I used to use Vaseline -- which stinks! -- but someone on these boards suggested the coconut oil which is wonderful stuff! I've tried the saline sprays and gels, but they dry me out and make things even worse.

Title: Re: Sjogren's 'must haves' list?
Post by: SunshineDaydream on November 13, 2015, 08:39:52 AM
I am loving the Thermalon Dry Eye Compress my husband got for me from Amazon for about $9. Heat it in the microwave oven (on a clean plate) for 30 seconds and place it over my eyes for a few minutes while I move my eyes around a bit. Afterwards wipe eye lids with warm, damp washcloth or paper towel.

It's small and light weight, so also good for travel where a microwave oven is available.
Title: Re: Sjogren's 'must haves' list?
Post by: Carolina on November 14, 2015, 06:13:48 AM
1. Nasal saline
2. Nasocort
3. Mucinex (generic)
4. Pilocarpine
5. Nature's tears
6. Humidifier
7. Cymbalta
8. D-Mannose
9. Exercise
10 Meditation
11. "How to Be Sick" by Toni Bernhard
12. Sjogren's World Forum
13. Dr. Patricia Lugar, my Immunologist

If I think of more I'll add them.

Hugs, Elaine
Title: Re: Sjogren's 'must haves' list?
Post by: SjoGirl on November 14, 2015, 04:06:06 PM
Avoid preservatives in everything, eye drops, food, etc.

I use Bausch and Lomb Soothe eye drops, the individual vials. Also suggest avoiding harsh soaps. I use Cetaphil in delicate areas and Tree Hut soaps and body butter. I recently tried Truist products, which are sold online.

CVS now sells a mouth rinse for dry mouth, I use it but have not tried it. I cannot use sugar free candies and can't tolerate zylitol so chew sugar free gum I am careful about which I use because some flavorings irritate my esophagus.

Search on products that help in the Forum search box you should find more posts from the past.
Title: Re: Sjogren's 'must haves' list?
Post by: A Mom on Spin on November 15, 2015, 06:27:16 AM
Great topic.   Love to see everyone's "must haves".   Here's what's in my personal arsenal:

1) Cool mist humidifier in bedroom  (I throw a drop or two of Lourdes water in - can't hurt!)
2) Thermalon warm eye refreshing compresses 2 x 5 minutes a day
3) BareMinerals mascara - No other makeup except a cheap eyebrow pencil and a gentle cleanser to remove it.
4) Natural Opthamalics homopathic eye drops (supposed to be available to drs only but easily purchased on Amazon.  I use the women's tear stimulation during the day and load up on the Ortho-K thick at night - all preservative free although sold in bottles.
5) Biotene toothpaste
6) Act Dry Mouth Lozenges during the day
7) Biotene oral gel and one Xylimelt for night use
8) Arm and Hammer Simply Saline Nasal Spray
9) Blistex Lip Medex for my lips (round blue container containing gel you apply with your finger - not waxy or chalky - the best!)
10) Nivea in-shower body moisturizer
11)  Twinlab Na-PCA with aloe for moisturizing face.

It's time for a new pair of eyeglasses so optometrist suggested we add blue tint - easier on the eyes which tend to get blurry from dryness.  Can't wait until they arrive because the blue tinted lens he held on top of my current glasses made a world of difference.  Will let you know how it works when the real thing arrives.
Title: Re: Sjogren's 'must haves' list?
Post by: Nugget on November 16, 2015, 03:54:44 PM
1.  Just started Restasis a week ago (will let you know how it goes).
2.  TheraTears during the day and Refresh Lacrilube at night.
3.  TheraTears Nutrition 3 caplets in the morning.
4.  Biotene mouthwath and toothpaste, and Colgate Prevident (Sensitive) at night.
5.  Almay mascara and Loreal Eye Shadow (my days of eyeliner are gone since it's too much for my eyes).
6.  Dove Sensitive Skin moisturising body wash.
7.  Glaxal base for moisturising.
8.  Goggles to protect my eyes while the heat/AC runs.
9.  Two different types of humidifiers.  One spews heated water and the other is a cool mist.
10.  Orthodics for my sore lil feet.  This has been a big help for walking and golfing.  I walk the dogs for 1.5 hours in the morning and 1 hour in the evening.  I wouldn't be able to walk a half hour without my orthodics haha.
11.  Poweraid Zero.  This keeps my hydrated better than water.  Unfortunately, water has the opposite effect on me; I get drier from drinking lots of water.
12.  No caffeine in anything--not even coffee.  It's decaf now.
13.  Dr. Scholls in my slippers.  Keeps my feet nice and comfy while inside the house.  Also Dr. Scholls while I wear heels.  Mind you I wear thick-heels shoes (almost clog or platform like), not stilleto types.  My feet can't take that.
14.  Saline rinse for my very dry and very runny nose.

That's all I can think of for now.
Title: Re: Sjogren's 'must haves' list?
Post by: didzcon on November 18, 2015, 08:12:29 AM
Hi! I'm also pretty new to this so not much to add.......
Lacrilube eye gel is my favorite time of the day.... I'd use it all of the time, but as it makes it seem like you're viewing the world through a jellyfish..... Just for bedtime!
Biotene mouth gel before bed too - stops Brazil nut tongue in the am.
Superdrug moisturising eye drops or hypromellose - but I'm not a big fan of eye drops as they just run straight out...... am I doing it wrong??
Clinique lazer repair wear eye cream - pricey but you can accidentally get it IN your eyes and no screaming.
Volume de Chanel mascara - also pricey but lasts ages. Doesn't flake or run or budge - doesn't make eyes sting as you bring the wand towards them!
Avon calming effects mineral powder foundation - sometimes a little itchy but better than the mummifying effects of some others :/
Avon glimmerstick eyeliner- has no harsh smell like some liquid liners but is softer than a pencil so won't drag. Stays put too.
A good sensitive toothpaste (usually sensodyne but most do the same job for me) and Colgate duraphate 2800 is a before bed essential.
I like good old fashioned aqueous cream for after showering.
3 dogs of various sizes for hugs and snuggles and complaining to :)
Title: Re: Sjogren's 'must haves' list?
Post by: SunshineDaydream on January 26, 2016, 02:59:44 PM
Count me in as another person who believes in taking D Mannose to prevent UTIs!
Title: Re: Sjogren's 'must haves' list?
Post by: pweidema on March 28, 2016, 01:56:39 PM
Two of my favorites that I haven't seen mentioned:

Coconut oil (1 tsp after brushing morning and night) - when my mouth is sore, I use this for "oil pulling" - swish around mouth for up to 15 min.

My WaterPik - always use after brushing - gets hard to reach spots really clean - mouth feels moist and refreshed.
Title: Re: Sjogren's 'must haves' list?
Post by: Anastasia on March 28, 2016, 04:06:17 PM
I don't yet have a diagnosis but I return to the rheumatologist this week and I know that Sjogren's is suspected. I don't have dry eyes or mouth but my lips are always dry - have been for a few years so I am never without lip balm. My absolute favorite is The Lip Slip by Sara Happ. Comes in a tube and lasts a long time - even with frequent use. A word of warning - it's expensive!!!  But it makes such a difference that I'm willing to pay for the relief. Hope this helps someone!
Title: Re: Sjogren's 'must haves' list?
Post by: Wal on March 29, 2016, 03:52:53 PM
Freshkote for eyes, xylimelts and ACT drymouth lozenges plus try Ubiniquol  for dry mouth. Lots of water and diced lemons to suck on to stimulate saliva.
Title: Re: Sjogren's 'must haves' list?
Post by: Dolly Dimples on April 05, 2016, 02:43:10 PM
  I love the new spray oils that seem to be all the rage here in the UK.
           all the make up companies seem to have brought one out.

    I even clean my face with L'oreals  Extraordinary cleansing oil.
  and then use  their Extraordinary facial oil before my usual face creams.  extra soft skin now,
                   but still got my wrinkles!   Dolly
Title: Re: Sjogren's 'must haves' list?
Post by: Nymph on May 22, 2016, 06:15:25 AM
This thread came back to my attention, and a couple of my favorites have not been mentioned:

1) Neti pot saline irrigation. I use filtered water and make a mild saline solution. This has made the difference between regular sinus infections and almost no sinus infections.

2) I also put KY jelly in my nose, expecially if it's too humid to use a humidifier in my basement apartment.

3) N-acetyl cystiene. This stuff makes a big difference in nose and mouth dryness for me.

4) DHEA sublingual drops. Makes my eyes much less dry.

5) Alaway eye drops. These help with blepharitis (inflamed eyelids) whether or not there is an allergic reaction.

6) My new favorite med is Sentra PM. This was prescribed to me for my dysautonomia and mast cell issues, so may not work for other causes of poor sleep. But I have to say I have not felt so alert and enegetic for a long, long, time!
Title: Re: Sjogren's 'must haves' list?
Post by: SunshineDaydream on October 29, 2016, 08:27:34 PM
Not a treatment or drugstore find, but this is a helpful reference book that covers a lot of Sjogren's topics: http://www.painful-bladder.org/pbs_ic_ass_dis.html
Title: Re: Sjogren's 'must haves' list?
Post by: irish on October 29, 2016, 11:23:28 PM
Don't forget the rice bag to heat in the microwave when one needs heat applied to an area. They are great.

Also, a hint. I always have to drag lots of Kleenex with me and on any kind of a trip I take a Kleenex box inside a double plastic bag. My favorite bags are from Menards as they are a little thicker and I get there often enough to keep a supply. By carrying the plastic bag I have someplace to dispose of my Kleenex and can take it home with me when I go. If I carry other things inside the bag I usually bag them separately. Irish
Title: Re: Sjogren's 'must haves' list?
Post by: SunshineDaydream on February 03, 2017, 07:24:53 PM
Bump for new members.
Title: Re: Sjogren's 'must haves' list?
Post by: irish on February 04, 2017, 03:08:50 PM
Everytime I read over a list like this I am overwhelmed by the amount of products it takes to sustain someone with Sjogrens. We are affected in every realm of life and I know that all of us find it very hard on our pocketbook.

People who don't have to cater to these health issues and buy all the products we do have no idea how easy life is for them. How many of you have a specific way or method to carry all their products necessary when they make a day trip or an overnight trips.

Can you let us know how you pack things or carry things for ease of use. In the car also as it ends up being so many items that we need "just in case". Thanks. Irish

Title: Re: Sjogren's 'must haves' list?
Post by: Pete0211 on February 04, 2017, 04:39:58 PM
I use a small "go" bag co-opted from my tactical equipment as my daily "stuff" bag. It' s loaded with all I might need - xylimelts, dry mouth spray, chewing gum, 2 days' worth of cevimeline, bottle of water, dry mouth gel, various viscosity eye drop vials, saline nasal rinse, and probably some other stuff that I'm forgetting (there's a lot of stuff I cram into it). It's always in my kitchen by the garage door, so when I go somewhere in the car I grab a bottle of water (for a total of two) and the bag.

If I travel longer than a shopping trip, the bag is always my "on the go" bag for the truck or if I go into some place where I think I'll be for a while (e.g. doctor appointment, government building, etc). For overnight and longer trips to a hotel or someone's house, I pretty much have a large compartment of my luggage that is dedicated to the full run of everything I use - soaps, shampoos, toothpaste, mouthwash, medicines, supplements, moisturizing cream, plus everything that I also carry in the go bag.

For places I travel to regularly, (family, for instance), I keep a stash of stuff there.
Title: Re: Sjogren's 'must haves' list?
Post by: Annticki on February 05, 2017, 12:52:04 PM
I found O'Keefe's Lip Repair several months ago and like it a lot. Same people who make the hand and foot cream that is for cracked fingertips and toes.

I like Biotene mouth spray but it's not handy to carry with you and found CVS has a store brand That has a pocket size. Nice to just keep in my purse. I also found a dry mouth lozenge at Walmart brand is Smart Mouth. Work well and the moisture lasts better than most. And taste is pleasant. Always have some in my desk at work.
Title: Re: Sjogren's 'must haves' list?
Post by: AnneNeville on February 24, 2017, 03:28:23 PM
I got Walgreens brand lip balm in French Vanilla (packaged in a ball like jar) and my lips feel better than they have in years.
Title: Re: Sjogren's 'must haves' list?
Post by: irish on February 24, 2017, 07:18:33 PM
I just want to add that I am a basket person. I buy those plastic weave storage baskets and have one on the passenger seat next to me. I have an old minivan and have a basket on the floor of the car between the front seats. I store water bottles, a cup for pens and pencils, paper for whatever, sunglasses, hand lotion, straws, hand wipes, etc. There are so many uses for these baskets and it depends on the time of the year and what kind of road trips your are making.

I live in MN and I always carry extra blankets and coats plus extra pair of shoes and snow boots, plus paper bags and plastic bags.

I carry a big jug of windshield fluid and jug of engine oil, funnel and paper towel. I keep them behind the drivers seat and do need to get a basket for them so they stay put better. I carry a pliers also and will use a paper towel to place around the oil cap when I need to remove the cap using the pliers. I have hand weakness plus really fragile tendons in my hands and need to protect them. The pliers works great to take off the oil cap when I need to add oil.

I keep a couple of bigger oval braided rugs in the back of my van so that it protects the carpet in the van. It also makes it easier to push boxes and bags of groceries across the floor of the van.

So, you can see I have been relegated to the position of eccentric old lady and look like a bag lady driving down the road. I love my van as it makes it so easy for me to get in and out of the van and allows for easy in and out with groceries, etc. Just some thoughts. I just tell the boys to ignore their mom's weird way in her old age. I have to do things that make it easier for me. Good luck all. Irish
Title: Re: Sjogren's 'must haves' list?
Post by: bluegardenia on February 25, 2017, 05:34:45 PM
i never go out (not even for one hour)from my house without: systane ultra, biotene, saline solution in a little spray bottle, a medicine to make thinner my thick mucous, a medicine for my down there neuropathy (vulvodinia), buscopan for cramps, gaviscon for stomach,  a little coca cola can for when food gets stuck in my throat,  cortisone spray and pills,and of course water and some homeopatic medidines.i carry all this always in my handbag and my friends think that im crazy.
 if i travel i have many more and in my house i have many of each bec im scared to be without something i need. may be i dont use them  and they will expire but i prefer to throw them away than to be worried bec i dont have them.
travelling is a nightmare just to think about.i have the thing to measure bllod pressure, a little thing to measure oxygen in blood (the same that they use when u arrive in er and they put it on your finger),  and many other strange things.
 if a have to fly, i try to carry everything double, one with me and one in my luggage just in case...
 and the personal humidifier... and may be some baby food.......
 well, i have sjs but im  also  allergic to many things and foods and i have diverticula but im also hipochondriac.........
Title: Re: Sjogren's 'must haves' list?
Post by: SunshineDaydream on April 26, 2017, 11:02:31 AM
The creators of Biotene were handing out samples of various Luvena brand feminine products (vaginal moisturizer, wipes, wash and lubricant) at the SSF Patient Conference earlier this month. Depending on the product, they are paraben, SLS, glycerin and/or chlorhexidine free. I haven't tried any yet but figured I'd post about it here in case anyone else wants to check them out.
Title: Re: Sjogren's 'must haves' list?
Post by: DP on May 12, 2017, 07:24:01 PM
There are some wonderful recommendations in this thread.

MOUTH DRYNESS: I use Xylimelts at nighttime.
DRY EYES: Xiidra - hands down, I got 90% relief from dry, gritty eyes after 6 weeks of using these prescription eye drops.
DRY SKIN: Cetaphil moisturizing cream - as others have mentioned. Soothing, has no chemicals or irritants.
DRY LIPS: Lanolin is the only thing I can tolerate. Every other lip balm must have something I'm sensitive to - I end up with cracked, painful bleeding lips. I buy Now Solutions 100% lanolin - I get the 7oz jar on Amazon. I melt it down in my microwave and pour it into lip balm tubes. It is a miracle worker. I've tried other lanolin brands and lanolin-based lip balms, they don't work for me.
EYE MAKEUP: I had to give up eyeliner & mascara. It's not the makeup that irritated my eyes, it was the process of removing it - just caused so much dryness and irritation. My eyes burned all the time and it felt like I had something in my eyes. A year ago I got permanent eyeliner tattooed on by a local permanent makeup expert. It's been a lifesaver & a huge time-saver! I stopped wearing eye makeup and my eyes are so much better. I have to admit the process of having the liner tattooed on is a bit painful - but it was so worth it. It saves me 15 min of prep time in the AMs.
JOINT PAIN & FATIGUE: Plaquenil (I just started 2 months ago and have already gotten 30% relief in joint pain, foot & hand pain, and fatigue. My muscle pain is much improved with Cymbalta. Between these two my pain is 1/2 of what it was last year. Also I take an NSAID Lodine.

I will have to try a humidifier next.
It's quite a journey, this Sjogren's. I do appreciate my good days now.
Title: Re: Sjogren's 'must haves' list?
Post by: P.Trish on May 27, 2017, 08:57:55 AM
All of your 'Must-Have' recommendations are appreciated!

Does anyone have a recommendation for a kitchen stool for sitting/perching while food prepping?

stupid fatigue
Title: Re: Sjogren's 'must haves' list?
Post by: cccourt1942 on May 27, 2017, 10:05:05 AM
I am so glad this thread re-emerged.  I have a new product. (sorry I don't know a stool for kitchen prep).

We have talked about eye make-up---and giving it up due to eye probs.  Last time or two this thread was up, someone mentioned it was the eye make-up REMOVER.  Honestly, it was the first time I had realized that.  It is so true. 

I use Cetaphil products for almost everything.  I recently discovered Cetaphil Gentle Cleansing Cloths.  I removed make up a time or two, and then...tempting the fates wore mascara one day.  Came off like a charm---nothing greasy or oily.  That is, nothing to get in your eyes.  I did have to rub at the eyelashes, but removal was great.  The next day I used a light application of eye shadow...and again, came right off.  I haven't (nor will I attempt) to wear eyeliner again.  Won't tempt the fates on that one. 

Keep new hints coming plz. 
ccc
Title: Re: Sjogren's 'must haves' list?
Post by: P.Trish on May 27, 2017, 12:31:26 PM
Yay about the makeup-removal cloths! I'm going on Amazon.

'Woman, vanity is thy name.'(Shakespeare) :)

Title: Re: Sjogren's 'must haves' list?
Post by: vrystaat on May 30, 2017, 09:31:08 AM
I tend to use prescription products:

Restasis for dry eyes, supplemented by Systane.
If the eyes are bad, my Dr orders Ketorolac optical solution. It burns for 30 seconds, & then relief! There is a burnless brand, but $$$$
For my chipped nails, I use Bamboo extract and the vitamin Biotene
My back pain needs the prescription drug Tramadol. Super effective, but is now a class 3 drug (thanks for nothing FDA)
For my dry, wrinkled forehead, I use Retin A

Hope this helps