Author Topic: Sjogren's 'must haves' list?  (Read 39374 times)

quietdynamics

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Re: Sjogren's 'must haves' list?
« Reply #45 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.
Sjogrens ANA 1:640; SS-A/B+; Fibro; IBS; Neuro symptoms,Thyroid Anti-bodies; Ocular Rosacea, Livedo reticularis,

"You can't have a positive life with a  negative mind"

4Kids

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Re: Sjogren's 'must haves' list?
« Reply #46 on: January 21, 2012, 05:03:05 PM »
bump for updates and new people!
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

Duchess

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Re: Sjogren's 'must haves' list?
« Reply #47 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

58 y/o, Sjogren's, Lupus, Raynaud's, Mitral Valve Repair, Asthma, Myofascial Pain. Plaquenil, Inhalers, Ibuprofen,Exovac, Vitamin D, Vitamin B-12, Omega 3, Eye Drops, Quinipril, Massage therapy.

susanep

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Re: Sjogren's 'must haves' list?
« Reply #48 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 :)



Sjogren's, Lupus, Rheumatoid Arthritis, Hypothyroid, Fibro, Sleep Apnea, Diabetes 2, Asthma, and Gerd.  (Meds I take) Omeprazole, Pilocarpine, Levothyroxine, Effexor, Cpap, Aspirin, Mobic, Prilosec,, Xanax, Restasis, Systane,Vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Nasonex, and Proventi

4Kids

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Re: Sjogren's 'must haves' list?
« Reply #49 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!
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

4Kids

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Re: Sjogren's 'must haves' list?
« Reply #50 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.
Plaquinel, Restasis, Salagen, Arthrotec, Cod Liver Oil, B Vitamins, Palafer-C, Plaquinel, Metformin, Spironlactone, Biotin

SunshineDaydream

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Re: Sjogren's 'must haves' list?
« Reply #51 on: June 09, 2015, 07:03:32 AM »
Bumping this thread full of a lot of very useful information to the front page.
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

Nomad

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Re: Sjogren's 'must haves' list?
« Reply #52 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.
« Last Edit: June 09, 2015, 08:09:08 AM by Nomad »
SLE, Sj.  Syndrome, IC, Atypical Trigeminal Neuralgia, ITP (low platelets)... Various meds and lots of vitamins. Trying to eat healthy; seems to help a little.

CaliSjogrenMale

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Re: Sjogren's 'must haves' list?
« Reply #53 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
« Last Edit: June 09, 2015, 02:23:02 PM by Linda196 »

Deb 27

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Re: Sjogren's 'must haves' list?
« Reply #54 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-:)
Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

SunshineDaydream

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Re: Sjogren's 'must haves' list?
« Reply #55 on: July 26, 2015, 12:00:57 PM »
Bump for new members.
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

Judie P

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Re: Sjogren's 'must haves' list?
« Reply #56 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
Primary SJS, SS-A >8, fibromyalgia, neuropathy, asthma, Effexor, Vitamin D 1,000mg, magnesium, Motrin, Ayr Nasal Gel, Ayr nasal mist, Optique 1 eye drops

A66eyroad

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Re: Sjogren's 'must haves' list?
« Reply #57 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!
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.

Suslew

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Re: Sjogren's 'must haves' list?
« Reply #58 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.

grammad97

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Re: Sjogren's 'must haves' list?
« Reply #59 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
Primary sjogrens, UCTD; osteoarthritis;osteopenia; HBP ;fibromyalgia;RX-plaquenil, butrans 20mcg patch ;flexaril;hydrocodone5/325;restasis, omega3, vit D, super B complex;s ;gluten free;lisinopril;moderate hearing loss