As a new SSs, I would appreciate some product recommendations from others. I see several recommendations are spread around in other threads, would be great to have them all in one thread.
Here's a few that I have found to work.
- Burt's Bees Intensive Hydration product line for face
- Chanel's Moisture-Rich foundation (makeup)
- CVS healthy hands (hand lotion)
- JOSIE MARAN 100 percent Pure Argan Oil (hands, body, hair & face)
- Systane Gel Overnight therapy (overnight eyedrops)
These work for me:
Dry Eyes:
Restasis Eye Drops (prescription)
Systane Eye Drops (in between the Restasis drops)
Dry Mouth:
Biotine Mouth Rinse
MighTeaFlow Mouth Rinse
MighTeaFlow Mouth Spray
MighTeaFlow Lozenges
AverTea Lip Balm
Dry Nose:
Saline Nasal Irrigations with Baruka Atlantic Sea Salt and Distilled Water (helps the dry throat too)
Dry Skin:
Eucerine Cream (in a jar)
Sun Screen:
Nutragena Sensitive Skin
General Dry Issues:
Pro Care Cool Mist Room Humidifier (in addition to my central humidifier)
Rheumatologist Prescribed Medication for Sjogren's:
Plaquenil
Anti-Inflammatory Supplements:
Curcumin (cleared up my Interstitial Cystitis and reduced my joint pain)
Boswelia
Peripheral Neuropathy:
R Lipoic Acid
Acetyl L Carnitine
Anti-oxident Spplements:
CoQ10
Complete Omega
N Acetyl Cysteine
Gamma E Tocopherol
Vitamin C
Joints and Osteoarthritis
SAMe:
Krill Oil
Osteopenia:
Estrogen Replacement
Citracal with D
Extra Vitamin D (also for low Vitamin D level)
Other Supplements:
Probiotic (Flor-assist)
Resveratrol
Complete B Complex
Vitamin A (from Beta-Carotene)
MacuGuard Ocular Support wIth Astaxanthin
Below are some drugs that have been offered to me but so far I am not using them:
My Rheumatologist offered me Cymbalta and Tramadol for the pain I have, but I have not taken her up on the offer yet.
My Neurologist offered me Lyrica, Lidocaine patches, Clonidine gel for the Peripheral Neuropathy pain, but I have not taken him up on his offer yet either.
Dry Eyes:
Restasis (Rx)
Refresh Optive DUAL Action (PRN, usually 1x hr)
Refresh Sensitive PM (at bedtime)
My wraparound sunglasses (doc offices even as the flourescent lighting bothers my eyes)
Dry Mouth:
Biotene Dry Mouth Oral Rinse
Biotene Toothpaste
Sugar Free Lemon Drops
Evoxac (Cevimeline) Rx
Water: sip swish swallow throughout waking hours
Xylimelts
Dry Nose:
Ocean Spray - FAIL
GeloNasal - FAIL
NasoGel - FAIL
CVS Sinus wash (netipot) - on the fence
NeilMed Netipot - I likee
Cool mist humidifier (Crane) - runs 24/7 no matter what the season
Dry Skin:
I ironically don't have much problem with that, perhaps due to vitamin E supplement? 1000 IU daily
Dry Throat
Just started on Singulair (Rx) for that.
Unclear whether it's SJS related or asthma, could be both
Sun Screen:
NONE
Roving pain issues:
Plaquenil (Hydroxychloroquine) Rx
Pain Flares:
Hydrocodone (pending getting in to clinic, PRN)
Trigger point injections/nerve blocks (in clinic)
Inflammation:
Turmeric/Curcumin 500 mg 3xday
Ibuprofen (spaced minimum hour apart from Plaquenil)
Dry Bum:
Stool softeners
Miralax
Dietary changes: gluten-free, fresh organic and limited processed foods
GERD:
Dexilant Rx
Zantac Rx
Other Pain issues:
Keppra XR (Rx)
Methocarbamol (Rx)
Saunders c-spine traction (Rx)
I threw in some extras, as many of us have co-existing conditions with SJS. just a snapshot to stay on topic
Dry Eyes:
Restasis
Thera Tears Pres free drops and Pres free liquid gel(last longer)
WileyX motorcycle Sunglasses Brick model (I've only had these a couple days but they've made my outdoor life much more bearable.
Theratears disappearing pres for when out and about
I use nothing overnight
Dry Mouth:
Burt's Bees lip balm
Salagen 5mg 2x/day
Evoxac 30mg 2x/day
biotene mouthwash (but it's gross) and toothpaste
GC MI Paste Plus (for teeth) every other night
1.1% fluoride toothpaste nightly
Trident Cinnamon gum w/ xylitol
Spry Lemon Mints (no mint taste tho)
Random sugar free candies
Mentos Chewing Gum Cooler Lemonade flavor (tastes like lemonade & made w/ xylitol)
Xylimelts when sleeping
water of course or seltzer
Dry Sinuses/Nose:
Neil Med saline in a can
Neil Med sinus rinse
Ponaris Nasal Emollient (for night time, has lasting power)
Hyalamist by episilk (good for during day)
Crane Coolmist Humidifier
Dry Skin:
I don't have a big problem with this but I use
Dove w/ Nutrium bodywash
Aveeno moisturizing lotion
Cetaphil cream
Dry Bum:
Miralax
Mineral Oil
FYI you should avoid regular use of STIMULANT laxatives
Thanks guys, this is extremely helpful. I can't wait to try some of these.
I almost forgot, having a shower head with filter has helped me a lot with both hair and skin dryness. I notice a big change when taking a shower somewhere else.
I'm adding probiotics to my list under Dry Bum
Hi Pinkfish - welcome. :)
I hope you find this site helpful to you on your Sjogren's journey as there is a wealth of information here.
Just thought I would post a thread that is several years old, but still has valuable information contained that might help someone in their quest to find products that help relieve Sjogren's symptoms, or at least make it manageable. Sjogren's 'must haves" list? https://sjogrensworld.org/index.php?topic=10139.msg101758#msg101758
We are each "unique" and no two present the same way with Sjogren's symptoms. What works for one, may or may not work for someone else. It usually boils down to personal preference.
As far as supplements and OTC products - please check with your doctor(s) before trying any products that might interfere with prescription medicines you are taking.
Bucky
Maybe you could PM me a link to the shower head with a filter since you can't put links up on here that sell things. I'd appreciate it. Thanks!
Pinkfish--
Does JOSIE MARAN 100 percent Pure Argan Oil have a scent? I tried a couple of aragon oil products for my hair, and they were too scented for me. I can't tolerate much of anything with scent.
Eyes: Pilocarpine, Ultra Systane (otc), Nature's Tears (otc), warm wash cloths
Nose: Simply Saline (otc), Nasonex (rx)
guaifenesin (otc) oral for thick mucus (Mucinex is the brand name, but I take generic)
Feet: Pedifix (orc) for thick cracking skin
Skin in general Nivea Body Daily Lotion, Essentially Enriched for Very Dry, Rough Skin (otc)
Humidifier in the winter
Liquids of all kinds all day by mouth
Mouth: Pilocarpine 5 mg 3xday (rx)
Dentist three times a year for check ups
Cymbalta for depression and pain (rx)
Aleve (generic) for pain (otc)
Turmeric (Curcumin) for pain (otc)
Tylenol (generic) otc for pain
Raisin bran for 'regularity' after a fashion (otc)
Relaxation and Meditation for sanity/pain
Benadryl and Claritan for itching and etc (generics actually) OTC
Hugs, Elaine
Quote from: Thea on May 02, 2014, 04:34:47 PM
Pinkfish--
Does JOSIE MARAN 100 percent Pure Argan Oil have a scent? I tried a couple of aragon oil products for my hair, and they were too scented for me. I can't tolerate much of anything with scent.
It doesn't have an added scent.
Eyes
Thera Tears
Soothe eye drops by Bausch and Laumb, feel like real tears
Occusoft wipes to clean off make up
Gastrosystem
gluten, dairy free
Few processed foods
Gellusil for gas and bloating
Water
Decaf tea
Pain
Acetaminophin
Tramadol
Dry Mouth
Biotene toothpaste
Closys mouthwash (from the dentist
Did not like Flourdex toothpaste
Lemon drops
Trident gum
Skin
Tree Hut products, inexpensive and smell wonderful
Cetaphil products - gentle skin cleanser for face, cream for body
Hair
Baby shampoo
Mask used like conditioner
Humidifier in bedroom and living room in winter
Take 200 mg of Plaquenil every day + multivitamin. I take Feosol iron every other day because I have anemia.
Pinkfish,
I use many of the products already listed above. For dry skin before I put the lotion on, I first use MSM lotion for all areas including the face.
P.S. Love the picture you chose
Nellie
One thing that has made a difference for me is Pancreatic enzyme. It helped with my digestion problems.
How do you take Turmeric? The taste is too strong for me to just add to food.
Helene ..... I take Super Bio Curcumin 400 mg from Life Extensions. It comes in capsules. Turmeric is difficult to absorb. The Super Bio Curcumin is especially formulated Turmuric for increased absorption. I take 1 capsule twice a day. It is helped my joint pain and stiffness immensely and it has completely gotten rid of my Interstitial Cystitis. It also got rid of the bilateral calf erythema I had last summer and the lower extremity edema I had last summer.
About Turmeric--look for a curcumin supplement in a health food store. I was told by a science-sort friend of mine that curcumin in absorbed better if it is with cayenne pepper in the capsule.
I tried it, but it hurt my very-touchy stomach. I'm going to try again if I can get my stomach better in the next while.
This is probably more for arthritis than SS, but I know there are a lot of us with sore hands on this board. I use a paraffin wax bath for my hands--right up and over the wrists once or twice a week. It feels just wonderful. If you put a salve on underneath the wax, it really moisturizes as well. You can buy the set up in the beauty department of any drugstore.