Author Topic: Sjogren's 'must haves' list?  (Read 39348 times)

Patze

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Re: Sjogren's 'must haves' list?
« Reply #15 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
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voiceteacher

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Re: Sjogren's 'must haves' list?
« Reply #16 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

lynnmarie219

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Re: Sjogren's 'must haves' list?
« Reply #17 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!

ohiolady

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Re: Sjogren's 'must haves' list?
« Reply #18 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
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

lynnmarie219

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Re: Sjogren's 'must haves' list?
« Reply #19 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!

bigb00

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Re: Sjogren's 'must haves' list?
« Reply #20 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?

SonyaR

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Re: Sjogren's 'must haves' list?
« Reply #21 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

HL in NY

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Re: Sjogren's 'must haves' list?
« Reply #22 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

ErinG

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Re: Sjogren's 'must haves' list?
« Reply #23 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.


coopwall

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Re: Sjogren's 'must haves' list?
« Reply #24 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


Nans

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Re: Sjogren's 'must haves' list?
« Reply #25 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.

Patze

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Re: Sjogren's 'must haves' list?
« Reply #26 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
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~elizabeth~

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Re: Sjogren's 'must haves' list?
« Reply #27 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.
« Last Edit: October 27, 2009, 04:52:47 AM by ~elizabeth~ »

coopwall

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Re: Sjogren's 'must haves' list?
« Reply #28 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


kwolfsheimer

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Re: Sjogren's 'must haves' list?
« Reply #29 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.