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Sjogrens Topics => Living With Sjogren's => Topic started by: keelton on June 12, 2016, 11:35:00 AM

Title: Saliwell device to increase saliva
Post by: keelton on June 12, 2016, 11:35:00 AM
I searched the posts to see if there has been any talk about this device and I haven't seen any as to rescently. I don't think it is available in the US but wondering how many of you in other countries have tried this any of these devices and do they work.?    One is a stent placed in the mouth and another is a pen that delivers shock to the nerve to stimulate saliva.   It looks promising and only has to be worn for a few minutes a day.  Would really love to hear from anyone that has tried it or participated in any trials.   
Title: Re: Saliwell device to increase saliva
Post by: Sharon on June 12, 2016, 02:38:00 PM
I read up on it a bit some time ago and it looked interesting.
Luckily Ubiquinol 100mg did the trick for me so I didn't investigate further.
Might be an option for those who have found relief with anything else.
Title: Re: Saliwell device to increase saliva
Post by: keelton on June 12, 2016, 02:39:37 PM
Hi Sharon.  I actually private messages you about this just a few hours ago.  The company is in Israel so I figured maybe you knew more than we do .  I don't think we can get it here in the US yet. 
Title: Re: Saliwell device to increase saliva
Post by: Sharon on June 12, 2016, 04:12:14 PM
If you send me the company's contact details I'll be happy to look into it for you.
Title: Re: Saliwell device to increase saliva
Post by: Bigleyj on June 12, 2016, 07:37:59 PM
Hi it's Jo here who has the saliwell stent. Apparently I'm the 4th person in Austrlia to trial it. It works! I hope you are able to get it in the U.S. Fingers crossed for you.

Jo 😀
Title: Re: Saliwell device to increase saliva
Post by: keelton on June 13, 2016, 05:58:48 PM
i checked with this company to see when it will be available in the US.  it is awaiting FDA approval but company says it should be available in the next few months.   it looks like it will be a very useful treatment for dry mouth without having to take medications! check it out  http://saliwell.com/
Title: Re: Saliwell device to increase saliva
Post by: Sharon on June 13, 2016, 06:25:13 PM
Wow, this looks really interesting!  :D
Looks like they also have an additional product along the same lines as well.
I wonder for how long it generates saliva after each use?
I didn't see the price mentioned on the site. Any idea of the cost?
Title: Re: Saliwell device to increase saliva
Post by: Kathy57 on June 13, 2016, 08:03:55 PM
Thanks for sharing this information.  Can't wait til we can get this in the US.  I'd certainly try it.

I have been getting good relief from using Ubiquinol 100mg twice per day.  I still get dry mouth but it is much better than It used to be. 

Kathy
Title: Re: Saliwell device to increase saliva
Post by: keelton on June 13, 2016, 08:07:48 PM
the saliwell pen is 250 US dollars,  you can order it directly from them if you are not in the US!
Title: Re: Saliwell device to increase saliva
Post by: Bigleyj on June 14, 2016, 01:13:07 AM
I'm so glad you should able to access the device soon. There are different ones. The one i have has a mouth guard thing and a remote. I've been trying to upload a picture for you but can't work out how to do it.

Anyway I used it as required for about 3 minutes at a time and as required was every couple of hours at first. Then after that I used it for 1 munute as required, I used it about 3 times a day if I  recall right and before I knew it i hadn't needed to use it at all.

If someone can tell me how to attach or upload a picture I'll put up pictures of mine. I think it is a Mark 2.

Cheers,
Jo.
Title: Re: Saliwell device to increase saliva
Post by: Sharon on June 14, 2016, 06:44:35 AM
Great news all around!
Kathy- Glad to hear the Ubiquinol is working for you. It's completely improved my quality of life as far as the saliva issue. I'm on 100mg nightly.

Jo- Is this what you mean?
saliwell.com/gennarino-professional-custom-made-dry-mouth-relief/

Keelton- Good job on finding this! Hope it gets FDA approved soon!
Title: Re: Saliwell device to increase saliva
Post by: keelton on June 14, 2016, 09:33:22 AM
hi sharon,  yes that is what Jo used,  its the mouth insert that has to be moulded to your mouth.  but there is the salipen also now i do believe it is standard for everyone ,  you are in Israel so you should be able to get both of them already i think.  I think you just wear it for a few minutes a few times a day,  Jo mentioned that it worked very well and she hasnt needed it at all for the last 6 months, so it sounds like the effects last a while with regular use in the begining.   
Title: Re: Saliwell device to increase saliva
Post by: Maria3667 on June 14, 2016, 10:17:55 AM
Very interesting! Thank you for posting this Keelton.

@Jo: any side effects?
Title: Re: Saliwell device to increase saliva
Post by: Maria3667 on June 14, 2016, 11:42:26 AM
Eventhough I'm very interested in this device, it also puzzles me... It supposedly works by stimulating salivary nerves with tiny electrical pulses... Making me wonder: is our nerve system impaired? Have scientists been barking up the wrong tree all this time?

Don't get me wrong: I welcome anything which improves our symptoms, but it just seems odd that no physician has ever mentioned this option before...
Title: Re: Saliwell device to increase saliva
Post by: Bigleyj on June 14, 2016, 01:32:01 PM
The link that Sharon put up is the one I have.

There are no side effects.

Jo ☺
Title: Re: Saliwell device to increase saliva
Post by: Sharon on June 14, 2016, 02:01:17 PM
Maria- Physicians don't mention many treatments...for example, has anyone's doctors mentioned any supplements to them to improve their AI condition? None of mine have...
As far as the nervous system, not sure about that. This device seems to force the salivary glands to work harder by stimulating them, similar to the results delivered by chewing gum which also produces more saliva or crying or yawning which will produce more tears.
As long as your glands are still somewhat in tact and not completely atrophied, it makes sense (at least to me) that this would work.
Title: Re: Saliwell device to increase saliva
Post by: Maria3667 on June 14, 2016, 04:01:00 PM
Hi Sharon,

Well my reumatologist actually mentioned several supplements, but never any device of sorts. Maybe your right, the electrical stimulation forces the glands to work harder - so did the electricity fail in our glands and is being turned back on again? (Why did it stop working?)... Food for thought ...

By the way, didn't Joe S (hope my memory serves me right) mention frequency modulation in regard to our failing glands before?
Title: Re: Saliwell device to increase saliva
Post by: Sharon on June 15, 2016, 12:32:42 AM
Our glands are just damaged and inflammed from being under attack.

Now all we need is a device similar to this for our eyes (lacrimal glands)!
Title: Re: Saliwell device to increase saliva
Post by: Catlover on July 05, 2016, 05:45:45 PM
Here is a device that I pray will help us.  I have spoken to this dentist.  He is really trying to help people like us.

http://www.chesterfieldobserver.com/news/2016-06-08/News/Dry_Run.html
Title: Re: Saliwell device to increase saliva
Post by: SunshineDaydream on July 07, 2016, 05:38:41 PM
That device looks promising, Catlover.

When I inquired last year, my insurance company did not provide coverage for the Saliwell device because it was still considered experimental. My dentist had not heard of Saliwell until I asked him about it a few weeks ago. He contacted Saliwell and was told that it is not yet FDA approved and the company does not have any representatives in the US.

Hopefully one or both of these devices come to market soon in all of our locations. It's good to have different avenues of relief.
Title: Re: Saliwell device to increase saliva
Post by: keelton on August 01, 2016, 12:00:13 PM
I got a saliwell device!  I will let you guys know if it works.  Will give it a few months.   I had someone bring it to me from Europe. It is not available yet in the US
Title: Re: Saliwell device to increase saliva
Post by: upquark on August 01, 2016, 12:03:24 PM
Keelton,
what country did you purchase it from? My husband is going to Germany and I am hoping he can get it from there.
Thanks!
Title: Re: Saliwell device to increase saliva
Post by: alwaysimproving on August 01, 2016, 01:17:17 PM
I am a little bit confused on how it works - so do you make saliva only as long as you put it in your mouth? Or do the effects last longer?
Title: Re: Saliwell device to increase saliva
Post by: keelton on August 01, 2016, 04:21:48 PM
They have an office in Germany so it is available there.  You should email them and ask where you can get it first.    I had someone bring it to me from Denmark.    As far as how it works . It is supposed to be cumulative meaning a lasting affect.   We will see if it works!  It would be nice to have a few people on here using it so we can test it for others . It's 250 dollars. 
Title: Re: Saliwell device to increase saliva
Post by: drylady on August 01, 2016, 05:46:04 PM
 Keelton I'd love to know your experience with it. Good luck.
Title: Re: Saliwell device to increase saliva
Post by: Catlover on August 06, 2016, 02:17:49 AM
Hi,

I contacted some of the US researchers that were part of a clinical trial.  I was actually going to buy this device from overseas.  They said it did not show improvement on sjogren's patients.  Big sad face. I hope they were wrong and it works for us.
Title: Re: Saliwell device to increase saliva
Post by: drylady on August 06, 2016, 10:45:06 AM
Hi Catlover. Bigleyj from Australia is using it and says it works so that's hopeful.
Title: Re: Saliwell device to increase saliva
Post by: Bigleyj on August 10, 2016, 03:17:30 AM
Hmmmm I wonder how many sjogrens patients they trialled it with.  My specialist said that I was his first sjogrens patient he was trialling it on.  That was just over 18 months ago.
So to the researcher that says it didnt show improvement for sjogrens patients ...Hellooo ...  here I am!

Anyway, hi to everyone on the forum from rainy Melbourne, Australia.

Jo 😀
Title: Re: Saliwell device to increase saliva
Post by: janny on August 15, 2016, 10:07:13 AM
Hi guys. I already know what the answer to this question is, but here goes anyway. Does anybody know of any possible way that I could get one of these devices in the U.S.? I know it's not FDA approved yet, but I am desperate. I did contact the company and they told me it would "be a good excuse to make a trip to Europe" to get one. Well, Europe is not in my budget right now and I don't feel good enough to go anyway! But, just thought I'd ask all of you if you knew of any way to get around it (other than going to Europe, of course). Wish I had a friend or relative who lived out of the country! Thanks.
Title: Re: Saliwell device to increase saliva
Post by: Sharon on August 15, 2016, 01:05:07 PM
I think you can order it from their site Janny.
Title: Re: Saliwell device to increase saliva
Post by: janny on August 15, 2016, 05:27:04 PM
Sharon, no, I tried, the guy told me to go to Europe to get it!! LOL
Title: Re: Saliwell device to increase saliva
Post by: Sharon on August 16, 2016, 07:26:56 AM
Strange...on their site they have an option button for Canada and U.S. orders.
Title: Re: Saliwell device to increase saliva
Post by: janny on March 10, 2019, 06:02:53 PM
I know this threat is 2-3 years old, but I wanted you all to know that I live in the US and had written to Dr. Andy Wolff, who came up with this Salipen device, and expressed interest. I just got an email from him yesterday telling me it has been approved by the FDA in the US ad is now available for purchase. It can be purchased on saliwell.com/about-saliwell/. I am going to purchase one and will let you all know how it works.
Title: Re: Saliwell device to increase saliva
Post by: markt on March 11, 2019, 06:35:11 AM
I heard the same, please read below...

On another note, has anyone had a DMD or Neurologist express an opinion on this device, and/or lingual nerve stimulation?

I know Allergan came out with TruTear, which uses electrical pulses to stimulate nueral responses and subsequent tear production... 

V/r,

Mark

-----Original Message-----
From: Dr Andy Wolff <andy@andywolff.co.il>
Sent: Wednesday, March 06, 2019 5:56 PM
To: Mark CIV USN FLTREADCEN SE JAX FL (USA) <@navy.mil>
Cc: 'Ben Z. Beiski' <bbeiski@saliwell.com>
Subject: [Non-DoD Source] RE: U.S.A. SaliPen purchase

Dear Mark,

Many thanks for your interest in our device.

In the US, FDA has authorized the SaliPen device as a prescription device. That means that we can sell the device to patients that send us a valid prescription issued by a dental practitioner or by a physician. (In other parts of the world, e.g. in Europe, SaliPen is an over-the-counter device, meaning that it can be sold without prescription.)

Thus, in order to proceed with your purchase, please do as follows:

1-    Get a valid prescription from a dental practitioner or a physician.  Dental practitioners are either dentists or hygienists or dental therapists. However, in many states, only dentists are allowed to provide prescriptions. The prescribed device should be identified as "SaliPen". The use should be "up to 5 times a day, each time up to 5 minutes".

2-    If needed, inform your dental practitioner or physician that may not be familiar with SaliPen, as this is a novel product. For this purpose, we are attaching to this e-mail materials that may be helpful for them (and also for you) to make an assessment:

a.    A brochure (one pager)

b.    The clinician manual

c.    The user manual

We recommend to pay special attention  to page 2 of both manuals, where the contraindications and the precautions are detailed.

3-    Send us the valid prescription. You can use any of the following ways:

a.    As a scanned document or a file attached to an e-mail

b.    By fax to our fax at +972-77-353-4338

c.       Photographed and attached to a text or a WhatsApp  message to the telephones: +972-50-725-6338 or +972-50-880-1852

If you use the fax or the cellphone, kindly inform us by mail after having sent the prescription.

4-      Order a device at the web page: https://www.saliwell.com/tranzila-page/. 

Your dental practitioner or physician or yourself are mostly welcome to approach us and request more information or scientific literature..

Best regards,

Saliwell managers (Dr. Andy Wolff and Ben Z. Beiski)

Title: Re: Saliwell device to increase saliva
Post by: Carolina on March 11, 2019, 07:11:55 AM
Wow, I, of course, had to do some research.   I found this from an Israeli dentist/research guy.

https://www.dentaltown.com/magazine/article/7456/electrostimulation-and-xerostomia

This is the conclusion:

Intraoral electrostimulation of the lingual nerve produces an overall incentive of the nerves controlling salivary function by both afferent and efferent fiber stimulation. This type of nerve activation can potentially provoke regeneration of damaged salivary gland tissue, like in postradiation and Sjögren’s syndrome patients. In fact, clinical studies have shown that in patients without any salivary output lingual nerve stimulation led to regaining their ability to spit saliva.8,1

I can't wait to hear from someone on our forum about how it is working for them.

It does seem complicated to get one. 

I guess it has to be 'charged' some how? 

I wonder how it 'feels'.

So many questions, as you can tell.

To be continued.

Regards, Elaine
Title: Re: Saliwell device to increase saliva
Post by: irish on March 11, 2019, 01:34:50 PM
This is very interesting. I don't know if any of yoyo have noticed but when you research the cause and symptoms of Sjogrens the articles will often state that the neurological issues are often the first to show up. This will be interesting to track over the years as it could well be both inflammatory of glands and nerves or a double whammy that causes the problems with the production of saliva.....we'll see what shows up with the eyes and the "tears". Irish



Just out of curiosity, how many people with Sjogrens have a history of head injuries (central nervous system (neurological) prior to developing the disease. Just a thought.