Author Topic: Sjogren's 'must haves' list?  (Read 39349 times)

wallaby

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Re: Sjogren's 'must haves' list?
« Reply #30 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.

Epson

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Re: Sjogren's 'must haves' list?
« Reply #31 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

Bernice

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Re: Sjogren's 'must haves' list?
« Reply #32 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!

lainier

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Re: Sjogren's 'must haves' list?
« Reply #33 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.


voiceteacher

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Re: Sjogren's 'must haves' list?
« Reply #34 on: November 25, 2009, 04:28:47 AM »
OK, I've not read this thread for awhile - what are Saliva Sure lozenges ??

Voiceteacher

syl

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Re: Sjogren's 'must haves' list?
« Reply #35 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

lighthouse33

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Re: Sjogren's 'must haves' list?
« Reply #36 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
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

Bucky

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Re: Sjogren's 'must haves' list?
« Reply #37 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
Come sit a spell and join in live chat - we serve non-fattening, zero calorie goodies while discussing all kinds of things.  ;D

http://www.sjogrensworld.org/chats.htm   (find our chat times here!)

lighthouse33

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Re: Sjogren's 'must haves' list?
« Reply #38 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
Female
Primary Sjogren's, polyneuropathy, endomitriosis, dietary fructose intolerance
Plaquenil, Lyrica, Tramadal, Omeprazole, Fortical, fish oil, flaxseed oil, benefiber, centrum chewable mulitviitamin, caltrate chewable 600 D+minerals, WSN Nerve Support Formula, Align, Biotene Products

Danielle28

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Re: Sjogren's 'must haves' list?
« Reply #39 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.

Kaila575

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Re: Sjogren's 'must haves' list?
« Reply #40 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....

4Kids

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Re: Sjogren's 'must haves' list?
« Reply #41 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.
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

Meld256

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Re: Sjogren's 'must haves' list?
« Reply #42 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

jmkboyer

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Re: Sjogren's 'must haves' list?
« Reply #43 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

irish

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Re: Sjogren's 'must haves' list?
« Reply #44 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