Author Topic: Xylimelts not effective?!  (Read 681 times)

Maria3667

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Xylimelts not effective?!
« on: August 17, 2021, 02:58:32 AM »
A bit disappointed about Xylimelts. I tried for the first time last night, but they don't seem to do nothing much at all! ... I was so hopeful after reading many positive reviews. Should I try longer, does the effect become stronger over time??
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex

araminta

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Re: Xylimelts not effective?!
« Reply #1 on: August 17, 2021, 03:19:32 AM »
If you have no saliva at all, I suppose they wouldn't work, but otherwise this is surprising.   Do they work when you're awake?

I use sugar free chewing gum at night, in the side of my mouth.   However I would hesitate to recommend that to others in case they aspirate it (apparently the Xylimelts are not dangerous if you aspirate them).   As I always sleep on my side that doesn't seem to be a problem, the chewing gum stays put.
Dry eyes (MGD), nose, mouth, labyrinthitis, rashes, dry skin (occasional eczeme), mouth ulcers, constant but fluctuating fatigue.  Blood tests and Schirmers negative,no Sjogrens dx yet.   Flax oil, multivitamins,  saline nasal spray, Hylo forte, Lacrilube, organic castor oil for eyes, moisturisers.

Carolina

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Re: Xylimelts not effective?!
« Reply #2 on: August 17, 2021, 05:47:27 AM »
Hi Maria,

Xylimelts help me when I'm involved in an activity where constant sipping of water is difficult, like exercising on the Nu-Step. 

Actually, while my dry mouth (getting drier all the time, alas) makes me think I need water, and I do 'sip, swish, and swallow' small amounts, the water actually leaves my mouth feeling dry!

Chewing gum (sugarless), during the day, makes a big difference, but I hate to chew gum in public.  I also 'bite' the inside of my cheek, and my lip, very hard, from time to time, which is no fun.

I take 30 mg of pilocarpine (salagen) daily, space over morning, afternoon and night.  I cannot imagine how much worse life would be without that medication.

Elaine


 
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Maria3667

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Re: Xylimelts not effective?!
« Reply #3 on: August 28, 2021, 04:16:43 AM »
@Araminta: even during the day the Xylimelts don't benefit me much. I'd be scared to use chewing gum at night.

@Elaine: chewing gum used to be my best friend but after 20 years I've worn down my jaw joint.

Is anyone else allergic to cellulose? After taking Xylimelts for 10 days straight my palate has become inflamed and my mouth even drier... ????

By realizing this, I finally seem to have found an important piece of the puzzle. I remember also reacting badly to eye drops - which often contain (some type of) cellulose. As do many medicines, supplements and foods. It explains why I always get these weird side effects none else seems to get.

I wonder what else I could try? So many food products already cut out. My rheumatologist says dryness tends to increase as we age, I'm 53 and dread what lies ahead of me.

« Last Edit: August 30, 2021, 02:03:58 PM by Maria3667 »
53. DES-daughter ('67), Lyme's ('98), GAD ('98), Sjogren's ('02), hypothyroid ('04), endometriosis ('14), osteoarthritis ('16), blepharitis & MGD ('18). Pilocarpine, thyroid meds, 12.5mg quetiapine, 5% testosterone. Allergies: sodium hydroxide, nickle, methylisothiazolinone, latex