Author Topic: Helpful hints, reviewed.  (Read 178 times)

Carolina

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Helpful hints, reviewed.
« on: February 05, 2020, 07:19:40 AM »
Dear Sjogren's Angels,

As the number of ways I 'help myself' seems to be increasing, I thought now might be a good time for all of us to share what makes Sjogren's more bearable.

1. RX Medication:  Pilocarpine (generic Salagen) is probably the best resource.  I now take 30 mg/day.  Pilocarpine increases moisture in my eyes, and to some extent in my mouth.

2. Eyedrops: The newer eyes drops actually stay in your eye, on the surface.  I use Ultra Systane.

3. Humidifier:  As soon as the heat is on, I add moisture to the air.  I have a humidistat and keep the humidity at about 45-50%.

4. Moisturizing Cream.  I use Nivea Soft, all over, as needed.  I also use it to take off my make up.

5. Pads to remove eye make up.  Almay makes a great pad.  I use it to take off eye make up (I only use water soluble mascara) at night, and again to 'clean and soothe' my eyes in the morning.

I don't have an Immune Suppressant like Methotrexate, or a newer monoclonal antibody treatment for my 'Sjogren's' because it isn't that bad, and I'm already Immune Deficient, so suppressing my immune system hasn't seemed like a good idea.

I know there are tons of other ways people ease their dryness.

If you feel like adding tips, your ideas may be helpful for 'newbies' who are searching for help.

Regards, Elaine 
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

markt

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Re: Helpful hints, reviewed.
« Reply #1 on: February 07, 2020, 12:52:24 PM »
I'll add to the survival kit list:

- Bandage Contact Lenses for dry eye

- RegenerEyes (like plasma tears, but better)

- EvoTears (fantastic eyedrops from Europe)

- Rituximab to halt production of harmful antibodies and to a degree improve/preserve glandular function

- Apple Cider Vinegar in solution; clears "yellow/white tongue"

- Argenine dental products (restorative properties for dental enamel)

I look forward to adding Lacripep to this list; it'll soon earn a prominent spot on any patients list once FDA approved.
« Last Edit: February 07, 2020, 12:56:33 PM by markt »

Carolina

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Re: Helpful hints, reviewed.
« Reply #2 on: February 08, 2020, 07:08:36 PM »
I forgot my Xlimelts that allow me the spend time with others, without so much dryness.

AND my tongue scraper!  I had no idea how wonderful it would be to scrape off the yellow gunk on a regular basis.

Regards, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3

sixty

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Re: Helpful hints, reviewed.
« Reply #3 on: February 08, 2020, 09:50:32 PM »
Do xylamelts help with bad breath?

Carolina

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Re: Helpful hints, reviewed.
« Reply #4 on: February 09, 2020, 12:43:37 PM »
From Xylimelts promotional material:

Treatment of Bad Breath
While only your doctor or dentist can determine the cause and treatment of your bad breath, OraCoat® XyliMelts® for Dry Mouth can provide you with fast and easy temporary relief in the meantime.

XyliMelts can also be used in combination with other over-the-counter breath fresheners such as gum, mints, mouth rinses, or breath sprays. They can be used while sleeping to prevent bad breath upon awakening.

Regards, Elaine
Female-Elaine,76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-Knee/Shoulder Degeneration-SIBO-Intertrigo-Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-Omega 3