Author Topic: Sjogren's 'must haves' list?  (Read 35778 times)

SunshineDaydream

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Re: Sjogren's 'must haves' list?
« Reply #75 on: February 03, 2017, 07:24:53 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

irish

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Re: Sjogren's 'must haves' list?
« Reply #76 on: February 04, 2017, 03:08:50 PM »
Everytime I read over a list like this I am overwhelmed by the amount of products it takes to sustain someone with Sjogrens. We are affected in every realm of life and I know that all of us find it very hard on our pocketbook.

People who don't have to cater to these health issues and buy all the products we do have no idea how easy life is for them. How many of you have a specific way or method to carry all their products necessary when they make a day trip or an overnight trips.

Can you let us know how you pack things or carry things for ease of use. In the car also as it ends up being so many items that we need "just in case". Thanks. Irish


Pete0211

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Re: Sjogren's 'must haves' list?
« Reply #77 on: February 04, 2017, 04:39:58 PM »
I use a small "go" bag co-opted from my tactical equipment as my daily "stuff" bag. It' s loaded with all I might need - xylimelts, dry mouth spray, chewing gum, 2 days' worth of cevimeline, bottle of water, dry mouth gel, various viscosity eye drop vials, saline nasal rinse, and probably some other stuff that I'm forgetting (there's a lot of stuff I cram into it). It's always in my kitchen by the garage door, so when I go somewhere in the car I grab a bottle of water (for a total of two) and the bag.

If I travel longer than a shopping trip, the bag is always my "on the go" bag for the truck or if I go into some place where I think I'll be for a while (e.g. doctor appointment, government building, etc). For overnight and longer trips to a hotel or someone's house, I pretty much have a large compartment of my luggage that is dedicated to the full run of everything I use - soaps, shampoos, toothpaste, mouthwash, medicines, supplements, moisturizing cream, plus everything that I also carry in the go bag.

For places I travel to regularly, (family, for instance), I keep a stash of stuff there.
Male 49 y/o; Undergoing Primary SJS diagnosis process; Cevimeline, Ubiquinol, Restasis

Annticki

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Re: Sjogren's 'must haves' list?
« Reply #78 on: February 05, 2017, 12:52:04 PM »
I found O'Keefe's Lip Repair several months ago and like it a lot. Same people who make the hand and foot cream that is for cracked fingertips and toes.

I like Biotene mouth spray but it's not handy to carry with you and found CVS has a store brand That has a pocket size. Nice to just keep in my purse. I also found a dry mouth lozenge at Walmart brand is Smart Mouth. Work well and the moisture lasts better than most. And taste is pleasant. Always have some in my desk at work.

AnneNeville

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Re: Sjogren's 'must haves' list?
« Reply #79 on: February 24, 2017, 03:28:23 PM »
I got Walgreens brand lip balm in French Vanilla (packaged in a ball like jar) and my lips feel better than they have in years.
Diagnosed with primary SS 2/2017 after 20+ years. Double vision from 6th nerve palsy, severe anxiety (now gone!), fatigue, dry eyes. Now: 12.5 mg Prednisone (burst), 200 mg Plaquenil, Prozac, Wellbutrin, Restasis, Xiidra.

irish

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Re: Sjogren's 'must haves' list?
« Reply #80 on: February 24, 2017, 07:18:33 PM »
I just want to add that I am a basket person. I buy those plastic weave storage baskets and have one on the passenger seat next to me. I have an old minivan and have a basket on the floor of the car between the front seats. I store water bottles, a cup for pens and pencils, paper for whatever, sunglasses, hand lotion, straws, hand wipes, etc. There are so many uses for these baskets and it depends on the time of the year and what kind of road trips your are making.

I live in MN and I always carry extra blankets and coats plus extra pair of shoes and snow boots, plus paper bags and plastic bags.

I carry a big jug of windshield fluid and jug of engine oil, funnel and paper towel. I keep them behind the drivers seat and do need to get a basket for them so they stay put better. I carry a pliers also and will use a paper towel to place around the oil cap when I need to remove the cap using the pliers. I have hand weakness plus really fragile tendons in my hands and need to protect them. The pliers works great to take off the oil cap when I need to add oil.

I keep a couple of bigger oval braided rugs in the back of my van so that it protects the carpet in the van. It also makes it easier to push boxes and bags of groceries across the floor of the van.

So, you can see I have been relegated to the position of eccentric old lady and look like a bag lady driving down the road. I love my van as it makes it so easy for me to get in and out of the van and allows for easy in and out with groceries, etc. Just some thoughts. I just tell the boys to ignore their mom's weird way in her old age. I have to do things that make it easier for me. Good luck all. Irish

bluegardenia

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Re: Sjogren's 'must haves' list?
« Reply #81 on: February 25, 2017, 05:34:45 PM »
i never go out (not even for one hour)from my house without: systane ultra, biotene, saline solution in a little spray bottle, a medicine to make thinner my thick mucous, a medicine for my down there neuropathy (vulvodinia), buscopan for cramps, gaviscon for stomach,  a little coca cola can for when food gets stuck in my throat,  cortisone spray and pills,and of course water and some homeopatic medidines.i carry all this always in my handbag and my friends think that im crazy.
 if i travel i have many more and in my house i have many of each bec im scared to be without something i need. may be i dont use them  and they will expire but i prefer to throw them away than to be worried bec i dont have them.
travelling is a nightmare just to think about.i have the thing to measure bllod pressure, a little thing to measure oxygen in blood (the same that they use when u arrive in er and they put it on your finger),  and many other strange things.
 if a have to fly, i try to carry everything double, one with me and one in my luggage just in case...
 and the personal humidifier... and may be some baby food.......
 well, i have sjs but im  also  allergic to many things and foods and i have diverticula but im also hipochondriac.........
60,primary sjs, diverticulosis,ibs,atrioventricular blocks 2 degree first type, acid reflux.
omeoprazole, vit c, flack seed, omega 3, b complex, nac,systane ultra, pineapple seeds

SunshineDaydream

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Re: Sjogren's 'must haves' list?
« Reply #82 on: April 26, 2017, 11:02:31 AM »
The creators of Biotene were handing out samples of various Luvena brand feminine products (vaginal moisturizer, wipes, wash and lubricant) at the SSF Patient Conference earlier this month. Depending on the product, they are paraben, SLS, glycerin and/or chlorhexidine free. I haven't tried any yet but figured I'd post about it here in case anyone else wants to check them out.
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

DP

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Re: Sjogren's 'must haves' list?
« Reply #83 on: May 12, 2017, 07:24:01 PM »
There are some wonderful recommendations in this thread.

MOUTH DRYNESS: I use Xylimelts at nighttime.
DRY EYES: Xiidra - hands down, I got 90% relief from dry, gritty eyes after 6 weeks of using these prescription eye drops.
DRY SKIN: Cetaphil moisturizing cream - as others have mentioned. Soothing, has no chemicals or irritants.
DRY LIPS: Lanolin is the only thing I can tolerate. Every other lip balm must have something I'm sensitive to - I end up with cracked, painful bleeding lips. I buy Now Solutions 100% lanolin - I get the 7oz jar on Amazon. I melt it down in my microwave and pour it into lip balm tubes. It is a miracle worker. I've tried other lanolin brands and lanolin-based lip balms, they don't work for me.
EYE MAKEUP: I had to give up eyeliner & mascara. It's not the makeup that irritated my eyes, it was the process of removing it - just caused so much dryness and irritation. My eyes burned all the time and it felt like I had something in my eyes. A year ago I got permanent eyeliner tattooed on by a local permanent makeup expert. It's been a lifesaver & a huge time-saver! I stopped wearing eye makeup and my eyes are so much better. I have to admit the process of having the liner tattooed on is a bit painful - but it was so worth it. It saves me 15 min of prep time in the AMs.
JOINT PAIN & FATIGUE: Plaquenil (I just started 2 months ago and have already gotten 30% relief in joint pain, foot & hand pain, and fatigue. My muscle pain is much improved with Cymbalta. Between these two my pain is 1/2 of what it was last year. Also I take an NSAID Lodine.

I will have to try a humidifier next.
It's quite a journey, this Sjogren's. I do appreciate my good days now.
« Last Edit: June 01, 2017, 05:56:55 AM by DP »
Living with primary Sjogren's since 2015, SSB-positive, overactive bladder, insomnia. Currently taking Plaquenil, Xiidra eye drops, Detrol LA, Lodine, Tramadol 3x week, Temazepam to sleep, ubiquinol (coenzyme Q), Omega 3 fish oils, Vitamin D, calcium, magnesium & zinc.

P.Trish

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Re: Sjogren's 'must haves' list?
« Reply #84 on: May 27, 2017, 08:57:55 AM »
All of your 'Must-Have' recommendations are appreciated!

Does anyone have a recommendation for a kitchen stool for sitting/perching while food prepping?

stupid fatigue
female dx'd Jan 2012, English/Drama Teacher: retired, plaquenil 400mg, aspirin 80 mg, Lisinipril 20mg,  fish oil, multi vitamins, methyl pred  pack (every 2 months) evoxac, d-mannose, biotin, gluten free
. Stroke survivor  'Have a heart that never hardens and a touch that never hurts" (Dickens)

cccourt1942

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Re: Sjogren's 'must haves' list?
« Reply #85 on: May 27, 2017, 10:05:05 AM »
I am so glad this thread re-emerged.  I have a new product. (sorry I don't know a stool for kitchen prep).

We have talked about eye make-up---and giving it up due to eye probs.  Last time or two this thread was up, someone mentioned it was the eye make-up REMOVER.  Honestly, it was the first time I had realized that.  It is so true. 

I use Cetaphil products for almost everything.  I recently discovered Cetaphil Gentle Cleansing Cloths.  I removed make up a time or two, and then...tempting the fates wore mascara one day.  Came off like a charm---nothing greasy or oily.  That is, nothing to get in your eyes.  I did have to rub at the eyelashes, but removal was great.  The next day I used a light application of eye shadow...and again, came right off.  I haven't (nor will I attempt) to wear eyeliner again.  Won't tempt the fates on that one. 

Keep new hints coming plz. 
ccc
Sjogren's, Psoriasis, Hashimoto's, Osteoporosis, Osteoarthritis, Cold hands/feet,  fatigue,  pilocarpine-25 mg , Restasis, Plaquenil, Low dose Prednisone (2-3 mg daily) Xylimelt, Citrucel, Alcon-Naturale, Tears,Omega 3, Vit.D, Caltrate+D3, Fosamax, CoQ10, Zinc, Oxtellar. Levothyroxene

P.Trish

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Re: Sjogren's 'must haves' list?
« Reply #86 on: May 27, 2017, 12:31:26 PM »
Yay about the makeup-removal cloths! I'm going on Amazon.

'Woman, vanity is thy name.'(Shakespeare) :)

« Last Edit: May 30, 2017, 11:20:45 AM by P.Trish »
female dx'd Jan 2012, English/Drama Teacher: retired, plaquenil 400mg, aspirin 80 mg, Lisinipril 20mg,  fish oil, multi vitamins, methyl pred  pack (every 2 months) evoxac, d-mannose, biotin, gluten free
. Stroke survivor  'Have a heart that never hardens and a touch that never hurts" (Dickens)

vrystaat

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Re: Sjogren's 'must haves' list?
« Reply #87 on: May 30, 2017, 09:31:08 AM »
I tend to use prescription products:

Restasis for dry eyes, supplemented by Systane.
If the eyes are bad, my Dr orders Ketorolac optical solution. It burns for 30 seconds, & then relief! There is a burnless brand, but $$$$
For my chipped nails, I use Bamboo extract and the vitamin Biotene
My back pain needs the prescription drug Tramadol. Super effective, but is now a class 3 drug (thanks for nothing FDA)
For my dry, wrinkled forehead, I use Retin A

Hope this helps
Sjogrens;Polymyositis;Polyneuropathy;Gastritis;GERD, Autonomic Neuropathy, Neurological complications, Trigeminal Neuralgia,Gamma 3 globulin low;Multiple infections;Brain fog; Ocular problems - blepharitis, scleritiis, dry eye,severe eye pain. Possible Inclusion body Myositis.Currently Endstage