Sialor update. We have saliva!!!!

[ammasgirl]

A few weeks ago, I was asking here if anyone had tried anethole trithione, a cholagogue which also increases salivation. Studies have shown it works very well with people with mild dry mouth, but not so great when it's severe, as it often is in Sjogren's. However, some studies have shown that it does work with more severe dry mouth, when it's combined with a saliva stimulant like pilocarpine or evoxac. Anethole trithione is OTC in Canada and much of the world, has no known serious side effects (bloating is a mild one that's listed- the only side effect listed as all), and there are no contraindications with other drugs. Sounded pretty safe to try but our hopes were low, as my mother has reported NO relief from either salagen or evoxac and only a tiny bit of relief with pilocarpine rinse.

The pills arrived, and as usual with OTC stuff, I tried it first. I have mild dry mouth from some medications myself, but nothing compared to my mother's very severe dry mouth. I felt nothing for a half hour and then got so much saliva, I had to start spitting it out. My mother was unimpressed as she kept pointing out that I don't actually have damaged salivary glands and have mostly normal levels of salivation. She waited until the next day to try it, and for the first hour and a half: nothing. I was completely unsurprised and figured it was yet another failed try, but a half hour later, my mother had a massive massive panic attack, the worst she's had since she has been home from the hospital. She said her mouth was filling up with a watery "saliva-like" substance which couldn't possibly be saliva. She was deeply frightened. She said any saliva she's ever had in the last few years has been so thick and sticky, and this was like water. She literally thought she was dying, that her glands which had been so dysfunctional were having a burst of life right before death. I don't mean to be glib- we were extremely scared and considered taking her to the ER because of the panic, but she fell asleep after taking Ativan and calmed down. It was unexpected but we figured anything that scared her so much, we'd never be able to try again.

The next morning, to my absolute shock, my mother asked when she could take another Sialor. She said all night her mouth had continued to produce saliva, and she had a moist mouth without artificial saliva for the first time in over 6 years. She had continued to take her 3x daily evoxac.

So that was five days ago and she has continued the Sialor/Evoxac spaced about two hours apart, each 3x a day, and she says the moisture level of her mouth is near normal. We have tried everything possible for 8 years. NOTHING HAS EVER WORKED. Sialor is a teeny tiny red pill- and it continues to shock my mother that it is making her salivate almost normally.

She is not totally well. She says the saliva is pretty plentiful and thin, but she still has taste issues so she's still only eating eggs and cereal. Still a long road ahead with the depression and the anxiety and sleep, fatigue, eating, etc..etc.. But she has saliva!

Have to go put my baby to bed (my literal baby, not referring to my mother this way), but very eager to pass this on. For those of you who aren't getting adequate relief from pilocarpine or cevimeline, sialor might be something that could help. I honestly didn't believe anything would help my mother short of a miracle discovery.

[gemini052377]

Thank you so much for sharing this information and your mother's experience! There is hope! I pray the saliva continues for your mother.

Take care,
Mary

[cccourt1942]

Now..isn't this amazing?? Also the med spelled "Sial---"....as in sialadenitis!  Wow.

This OTC story is how I felt after I started pilocarpine + xylimelts.  After a few days the corners of my mouth chapped.  I was already using lip balms (not menthol/camphor)...but didn't help the chapped areas.  Pulled out the carmex..and healed after 4 or 5 applications.  The onset of the saliva was so enormous I had a cough badly enough I went to my GP.   She said it was merely saliva. (or whatever it is we produce via meds)  Gave me cough syrup and told me to take mucinex to thin the saliva.  Went away after 3 or 4 days.  Such a strange sensation though. 

Your story was funny to me...but I do realize the gravity of your fears at the time!  Will be fun to look back at this event when your mom rejoins life!!   

You are the daughter of the century.  You two (or three) have a great day!!

[ohiolady]

What about the US, is it available here?  I will have to Google. 

Thanks,

Anna

[eye2dry]

I wish I could take the pilocarpine., b/c it really worked for me.

I tried it 3 years ago and by the 4th day I had terrible vertigo....room spinning...

and vomiting. Had it so severe I had to see my dr. for a shot of Compazine and RX for antivert.

Turned out to be a side effect of pilocarpine.

[kimberly64]

I want to know hows I can get this medicine to try with Evoxac.  Please let me know if anyone finds out.
Kimberly

[ammasgirl]

If anyone wants details, happy to send exact information but
anethole is available readily online and in pharmacies(although not in the us)
without an rx.

[kimberly64]

The only thing that scares me is authenticity of ordering online.  US doesnt perscribe this I dont think and that concerns me that it may not be safe, no FDA approval.  Let me know if anyone on this board has had experience with this inside the US.

Kimberly

[DryGuy]

Please pm your online source if possible. Thanks!

[gemini052377]

I was able to access a product info site, for those of you who follow a gluten free diet there is wheat in the ingredient list. Otherwise, I was interested in trying this. Please still keep us posted on information or sites you may find.

Take care,
Mary

[ohiolady]

I get Domperidone from a Canadian pharmacy.  I am planning on asking about this product.

Anna

[kimberly64]

Ohiolady please let me know if you can get this through the online site you use and send the name of it and any iformation you can get on the product.  It sounds promising.
Kimberly

[4Kids]

I am in Canada, have never heard of it, and am wondering where to buy it with no luck googling.

Thanks for any help.

Jackie

[drylady]

Hi Ammasgirl I'd also like info on what site you used for ordering Sialor, thanks.

[Richards1953]

For those in Canada, at least, that want to try the sialor - just ask your pharmacist to get it in for you.  My pharmacist suggested it in the first place.  Unfortunately, it didn't work for me - but I also wasn't on the pilocarpine at that point in time, so I just may try it again in conjunction with!  Pilocarpine not working much for me after two months but won't give up on it yet - a little loosening in the mouth is better than none!