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.
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
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!! ;D
You are the daughter of the century. You two (or three) have a great day!!
What about the US, is it available here? I will have to Google.
Thanks,
Anna
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.
I want to know hows I can get this medicine to try with Evoxac. Please let me know if anyone finds out.
Kimberly
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.
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
Please pm your online source if possible. Thanks!
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
I get Domperidone from a Canadian pharmacy. I am planning on asking about this product.
Anna
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
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
Hi Ammasgirl I'd also like info on what site you used for ordering Sialor, thanks.
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!
Richards,
Salagen did nothing for me and my ENT switched me to Evoxac and my mouth went from very dry to moist all the time. I dont produce a lot of saliva but the other drug had no change for me so you may want to switch. I think others have had a similar experience.
Kimberly ;D
Apologies for slow responses but will reply to all pm's this evening. Rough and busy couple of days.
Strange that it's harder to find than I thought. I've purchased from two different pharmacies in Canada as the first one said there is a manufacturer shortage and they won't have stock until the end of the month.
Richards- I would definitely give anethole another try with the pilocarpine since you can't get evoxac.
My mother noticed NOTHING on pilocarpine or evoxac and it was the combo that worked.
Asked Canadian pharmacy about Anethole. He said he was not familiar with this as a saliva stimulant. Also said it was used as a flavoring and insecticide.
Just an FYI as to what I found out.
When my mouth dryness flares up and is worse than usual I take an extra Evoxac.
Anna
I'm surprised a pharmacist wouldn't know about it, since it's an OTC drug in Canada, which says "for treatment of dry mouth" on the box. Never heard of insecticide properties but it is under study as an anti-cancer drug, as it seems to prevent recurrence of many cancers. Maybe you can try one of the online pharmacies in Canada? I've sent links to the pharmacies to anyone who wanted the information. Happy to send info to anyone who wants it.
Still working well for my mother for greatly increased salivation, but unfortunately it hasn't led to her mouth feeling great. So there's obviously more going on than just pure lack of moisture- she feels discomfort, all kinds of taste issues- and yet she has saliva. I think she's so used to having such an uncomfortable, painful mouth that it will take a while for her to feel very different. Anyone have that effect with pilocarpine or cevemeline- greater moisture but still feeling a lot of discomfort?
Some links on anethole trithione here- it's an interesting drug. My feeling is it will pop up as an anti-cancer drug in the US at some point.
http://www.wikigenes.org/e/ref/e/6508432.html
http://www.wikigenes.org/e/ref/e/3233051.html
http://www.oralcancerfoundation.org/complications/xerostomia.php
Oh you know, I think the pharmacist must have been confusing anethole (http://en.wikipedia.org/wiki/Anethole), which is a fragrance culled from essential oils, with the cholagogue, anethole trithione (http://en.wikipedia.org/wiki/Anethole_trithione), which is what my mother is taking.
I am going to contact a pharmacy today about this. My cousin is a pharmacist here in the US, she will research this for me. Thank you for clearing this up ammasgirl.
Kimberly
Thanks ammasgirl, I did only give him anethole. I will email the pharmacist again. I told him I had Sjogrens and was looking for saliva stimulant. He is very knowledgeable and helpful. So, not sure why he wasn't aware?????!
Will also see what Kimberly's contact says.
Thanks,
Anna
Ammasgirl,
How is your mom doing? I found out this medicine is legitimate but not available in the US at all yet. Do you know a good site to go to for this?
Kimberly
Kimberly- my mother still has saliva, an almost normal level after having extreme dryness for about 8 years now. It hasn't solved all her problems, as her mouth is still causing her a lot of problems, and she gets panic attacks where she isn't sure how her mouth feels, just that it feels "wrong". I think, actually, the drastic increase in saliva has caused her some additional feelings of discomfort because she always believed that if she could just have saliva, she would feel completely normal again. Obviously there is more going on with Sjogren's than just the oral dryness.
We are in the US as well, and we are ordering the Sialor from Canada, and did a more recent order from Europe, of Sulfarlem (just different trade name) because it's less than 1/10th the price! Unfortunately the European pharamacy doesn't deliver to the US, so a friend is sending to us, but the price is so much more reasonable. We paid $100 for a box of 60 tablets from Canada (to be taken up to 3x a day so just a 20 day supply), and about $6 for the same amount from the European pharmacy.
I will PM you some links. My super super drug sensitive mother hasn't experienced any side effects so I think it's a good option for people who are still dry on evoxac or salagen.
Ammasgirl.
Can you please inbox me all the details about this product.
@Ammasgirl,
I know this is an old thread but am looking for an alternative to pilocarpine.
So would you say sulfarlem (Sialor) contributes to her anxiety?
Glad this drug is help people. I had to do research on it cause I had not heard of it. Will be interesting to see how this work over a long period of time. Will hope for the best. Merry Christmas meirish
Just saw this post. Wondering if anyone can send me a link as to where to purchase this? I am in the U.S. You can Inbox me. I appreciate it so much. Also, has anyone else used this and found it to work? I am willing to try anything.
Quite a few years ago I ordered inhalers for my husband and myself from a Canadian pharmacy. The way I went about this was I went online and found about 3 pharmacies that had what I thought was good info online and some showed some pictures.
Then I called each one of them and I ended up having no problem finding a good pharmacy. I can't remember the name of it but I think it was in British Columbia...west coast of Canada. I asked to speak to a pharmacist or someone in charge and had a list of questions I wanted answered. I had to have scripts for the inhalers so that was one hurtle that ended up being no problem with our doctor.
I asked where they got their meds. Know that everyone in the world gets their medications from many different countries. Our inhalers were from England, India, Canada and a few other countries in Europe. This pharmacy told me that they got most of their drugs from the same manufacturers that Walmart and Walgreens got their drugs. This was my first information telling me that many, many drugs come from manufacturers in other countries.
Asked how they did payment for the drugs from that country. How long it takes to get the meds and how does the shipping and postage work...who pays and when?? Asked if they had trained techs and how many pharmacists they had and what hours they were open. Also, is there any problem with shipping medications between countries and how much involvement is there with postal services and the government.
With drugs that are not prescription it should be quite simple. I always counted the pills to make sure there were enough when I had to order a special med for my husband that was new and so much cheaper from Canada. Just in general check out their packaging and just any thing that you might think isn't up to par.
The pharm I used was so good about talking to me when I called with questions and I felt comfortable always. I did this for about 4 years. I think you will know when the people you talk with aren't quite as knowledgeable or as accommodating as they should be. Actually, I think that even ordering from online pharmacies in our country need to be checked out also. WE had to change doctors and the new doc wasn't about to do scripts to another country.
I saved all the paper work and correspondence I had with the company and copies of the drug prescriptions that I had to send to them. Always have to make sure to are keep documentation in case some issue comes up. Also, I noticed that some pharmacist said drug was also an insecticide. I always have to remind myself that just because someone has a title after their name they can still make a mistake. Good luck. meirish
Wow. That sounds like a lot of work and calls. Was hoping someone could just refer me to a pharmacy in Canada or even somewhere else. I am aware that all of our meds come from other countries. Thank you!
hi so you still use sialor? its available in the states now?
sialor is sold also with the name SULFARLEN, they say that it starts working after days and that it works to increase bile secretion so you could have diarrhea.is it true??
bluegardenia I would also be interested to find out about the sialor. Sounds like it would be worth a try if it works and has little or no side effects!
Kelley