Lack of saliva cevelimine doesn’t work this is a new device does it w

Posted by cblue @cblue, Jan 20 7:41am

Passed on to me by oral pathologist, but she doesn’t know anyone heard of it or, better yet know anyone who tried it?
http://saliwell.com/ seems to good to be true, but its difficult living without saliva. They claim to beFDA approved. But there are some issues with medical devices .
Also unsure if covered by insurance.. maybe if prescribed. Seems fishy, but might be worth a try. Would feel better if anyone had experience with it. Please rely with thoughts or personal knowledge.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

cwitton1 | @cwitton1 | Jan 22 12:15pm

In reply to @cpd54 "@cblue I can’t address the use of the Salipen but something I am researching is vitamin..." + (show)

Is this just OTC?

cblue | @cblue | Jan 22 6:46pm

Looks like otc. I wrote to them with an email address and landline number to ask (:

sennephile | @sennephile | Jan 28 10:43am

FYI. I ordered SaliPen on line. There was no need for an MD’s prescription.

cblue | @cblue | Jan 28 4:29pm

I’m sorry sennephile , I don’t remember if you posted how it worked earlier. Or if you are just getting it now? I belong to another patient support group . One person felt like it didn’t help at all.one feli like she was going to stick with it apparently you need to use it for 3 or 5 minutes a few times a day, for a certain number of weeks. Others, didn’t

2thfairy | @2thfairy | Jan 29 11:18am

I’m a Registered Dental Hygienist, retired. I’ve read the journal articles on SaliPen. They didn’t use many patients in their studies, in my opinion. Not to say it isn’t effective for some. IT LOOKS LIKE THE PRICE IS $249 AMERICAN.

I’ll ask my online groups of other hygienists if their patients are using this item and I’ll report back to you soon. I do see how it could stimulate salivary flow though, as even a Sonicare toothbrush stimulates my own low salivary flow.

sennephile | @sennephile | Jan 29 11:49am

In reply to @cblue "I’m sorry sennephile , I don’t remember if you posted how it worked earlier. Or if..." + (show)

I’m still using the SaliPen device. I’m still in experimental stage since I only ordered it fairly recently. Truly hoping it will have some effect. Next step—if this doesn’t work—is to look into stem cell transplant though I’ve read there’s risk of infection. I have no sense of smell, taste and no saliva. How much worse can a stem cell transplant be give the unpleasant misery one is experiencing?

dancing1 | @dancing1 | Jan 30 7:33am

I haven’t heard if this before .. just wondering if any of you have tried other than medication… milking your saliva glands. On a sjogrens program I learned how to do it. It’s been incredibly helpful for me this past years and has so improved my ability to eat clean my teeth and have some saliva. Not a cure but had so improved my swallowing and more!

cblue | @cblue | Jan 30 8:18am

Can you explain what milking saliva glands entails? I’ve g heard about massaging them . Haven’t been consistent

dancing1 | @dancing1 | Feb 5 8:48am

In reply to @cblue "Can you explain what milking saliva glands entails? I’ve g heard about massaging them . Haven’t..." + (show)

Please look on the sjogrens sight information. It will explain it. If you can’t find it I could try to send you more information. It’s very simple I do it every day almost and it has really increased my saliva production. I message the sides of my face right below my cheek bones. They explain it much better on the site. If not write me back and I’ll try to find the site. Thank you.

cblue | @cblue | Feb 5 3:50pm

I found something on you tube., Otherwise I'm not sure which Sjogren's site you are referring to. If you see this, let me know.

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