Author Topic: Sjogren's 'must haves' list?  (Read 39379 times)

A66eyroad

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Re: Sjogren's 'must haves' list?
« Reply #60 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.

Female, 61
Sjogrens, UCTD, and subacute cutaneous lupus. Flu-like symptoms, mouth & nasal ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, esomeprazole.

SunshineDaydream

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Re: Sjogren's 'must haves' list?
« Reply #61 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.
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

Carolina

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Re: Sjogren's 'must haves' list?
« Reply #62 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
Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol

SjoGirl

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Re: Sjogren's 'must haves' list?
« Reply #63 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.
Raynauds, sero-negative RA, Primary SjS, osteopenia, degenerative disc disease, disc protrusions,stenosis, Carpal tunnel,  poly neuropathy, myoclonus, hiatal hernia, esophagitis, viral infection, Leukopenia. Restasis, Vitamin D, B12, Evoxac, Lanzoprezole, calcium acetaminophen.

A Mom on Spin

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Re: Sjogren's 'must haves' list?
« Reply #64 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.
www.mysjogrenslife.blogspot.com
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Primary SJS. RA & lupus. Positive ANA, SSA, anti-phospholipid Antibodies. Large and small fiber peripheral neuropathy

Nugget

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Re: Sjogren's 'must haves' list?
« Reply #65 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.
« Last Edit: November 16, 2015, 03:58:08 PM by Nugget »
Primary Sjorgren's, TheraTears Drops, TheraTears Nutrition, Restasis, and good ol' prayer.

didzcon

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Re: Sjogren's 'must haves' list?
« Reply #66 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 :)

SunshineDaydream

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Re: Sjogren's 'must haves' list?
« Reply #67 on: January 26, 2016, 02:59:44 PM »
Count me in as another person who believes in taking D Mannose to prevent UTIs!
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

pweidema

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Re: Sjogren's 'must haves' list?
« Reply #68 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.
« Last Edit: April 02, 2016, 11:59:54 AM by pweidema »
64, female. Sjogren's dx 2012. Nickel allergy. Blepharitis.
Fish oil 3000mg, AHA, B complex, Paxil.  Gluten free.

Anastasia

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Re: Sjogren's 'must haves' list?
« Reply #69 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!

Wal

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Re: Sjogren's 'must haves' list?
« Reply #70 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.

Dolly Dimples

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Re: Sjogren's 'must haves' list?
« Reply #71 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

Nymph

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Re: Sjogren's 'must haves' list?
« Reply #72 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!
38 y.o. teacher; anti-CCP+, RF+, otherwise seronegative; POTS; Plaquenil, Allegra, Depakote, Neurolink, C, probiotic, multi-V, magnesium, quercetin, NAC, DHEA, fish oil, D3, turmeric, ubiquinol; <3 my neti pot

SunshineDaydream

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Re: Sjogren's 'must haves' list?
« Reply #73 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
Sjogren's, lupus, OAB and osteopenia
Rx: Evoxac and Myrbetriq
Vitamins and Supplements: A, B complex, C, D3, E, calcium orotate, magnesium glycinate, D-Mannose, curcumin, fish oil, probiotic

irish

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Re: Sjogren's 'must haves' list?
« Reply #74 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