Tamoxifen and dry mouth?

oceangirl654 · April 2015

Does anyone else have dry mouth on tamoxifen? I can't find it listed on a side effects list anywhere but I have it very severely. Please let me know if you have it too! And whether your doctor explained what causes it.

FlatyMady · April 2015

Do you have it all the time - day and night? I have it when I go to sleep every night. I'm on Tamoxifen and Effexor and didn't start having dry mouth at night until I went on the Effexor so I have thought it was from the Effexor. I've mentioned it to my PCP but he thinks it's allergies causing it. I tried some allergy medicine and that didn't help. My dental hygienist told me that people on 3 or more meds frequently have it. So I don't really know but it sure is annoying waking up several times at night with that dry mouth feeling. But in the big scheme of things, I guess it's the least of my problems!

oceangirl654 · April 2015

Hi, I have it all the time, day and night. What time do you take your meds? I think it's not really a minor side effect because it can destroy your teeth. The only other time I got it was when I was taking 3 advil every few hours for a few days. It is making my lips crack in the corners. I hate it! Thanks so much for your answer- at least I know it's not just me.

Moderators · April 2015

Hi oceangirl. In the main Breastcancer.org site there is an article with information and tips on managing this side effect. See here: Dry Mouth

Hope it helps a bit and you feel better soon!

The Mods

oceangirl654 · April 2015

Hi Mods, Thanks. I don't want to manage it, I want to get rid of it! Also, if it's not a usual side effect then I'm wondering what's wrong. Best wishes, Caroline.

oceangirl654 · April 2015

p.s. Thanks for the article on dry mouth. I just read it. It says that it is caused by chemotherapy or pain meds. But not tamoxifen. I'm wondering what is going wrong with my body to be causing such a severe symptom that is not a usual side effect.

GG27 · April 2015

I had severe dry mouth on one of the brands of Tamoxifen, I'm afraid I don't remember which one, but it was like it started almost immediately & then when I changed brands it got quite a bit better. Now I'm on anastrozole & my mouth is moist again. I tried using overnight moisteners & special toothpaste, it helped a bit. Good luck, GG

oceangirl654 · April 2015

Hi GG27,

Thanks so much for your answer! It gives me hope that I might be able to switch brands and that things will be better. Do you remember the names of any of the brands you took? Also do you remember whether you took the non-generic type?

I really appreciate your answer! Do you feel ok on the AI drug? I hope so! Hugs, Caroline.

oceangirl654 · April 2015

Hi GG27, Do any of these brands sound familiar: Teva, Mylan, Watson/Activas, Aegis, or the non-generic Nolvadex? Thanks for your help! I really appreciate it! Caroline.

GG27 · April 2015

Oceangirl, I took Nolvadex but then I had to change to another & I'm afraid I don't remember what the generic was, but we also have different drug manufacturers in Canada than the US (not sure where you're from) But I think you may have to just try different ones until you find the right one for you. I had problems with severe joint pain on a couple of them too.

I have a couple of very minor SE's on anastrozole.

It was a long process for me figuring out which one worked for me. Talk to your onco about it & if you have a good pharmacist you can ask for help which is what I did. Good luck, GG

oceangirl654 · April 2015

Hi GG, Thanks for letting me know! Was Nolvadex the one you had dry mouth on? I'm glad you're feeling good on your current medicine.

GG27 · April 2015

No it wasn't Nolvadex, it was another one that I was given in the interim & I took it for about a year. Then I did the research & found a generic which the Cancer Agency ordered in especially for me. I have racked my brain to try to remember the name of the manufacturer & I just can't.

But try to get this solved, I had terrible problems with my gums receding from dry mouth & it's taken about a year to get them back to normal, with the help of my dentist & hygenist. GG

oceangirl654 · April 2015

Hi GG, Thanks so much for telling me about your gums. I was wondering if damage was being done because I am holding my mouth differently because of the dryness and my gums feel really weird. My gums are already receded almost all the way (I've even had a gum graft that was very sore and then failed) so that's the last problem I need! Do you remember what you researched exactly- like was it a certain inactive ingredient that's bad? I am going to try a different Generic today (Mylan). I have already tried the two others (there are three to choose from in America). How come you didn't go back to Nolvadex? (Just wondering because I was going to try to see if I can get it from a different country if this generic doesn't solve the problem. They don't make it in the US anymore). Thanks so much for your help! I appreciate it so much!

GG27 · April 2015

I didn't go back to Nolvadex because it wasn't available anymore here. Because here in BC we don't get our breast cancer drugs from a regular drug store we are limited to what is offered at our specific cancer agency, they are free because it is considered part of our ongoing treatment.

We discovered that I have an allergic reaction to Lactose which is a filler used in a lot of medications. The cancer agency pharmacist researched the inactive ingredients for me & she found one that they could order in for me that didn't have this filler. APO!!! it was APO brand tamoxifen, it just came to me while I was typing this. GG

oceangirl654 · April 2015

Hi GG, That is great that you remembered!! Maybe I have an allergic reaction to lactose too. I will keep that in mind when trying to find out which brand is best here. Did they actually test if you have an allergy or did they just guess that that was most likely the offending ingredient? I just looked and all the brands I can get here have lactose. Oh no! I don't know what I'm going to do! I just got Mylan today to try, but it also has lactose. It doesn't have croscarmellose, which I heard can give you side effects. But Mylan has other horrible stuff like silicon and sodium lauryl sulfate. Who wants a daily dose of silicon and sodium lauryl sulfate? Not me! But I am going to try it because it's my last hope as far as brands available here. If it doesn't get rid of the dry mouth then I'll have to figure out what on earth to do. Thank you so much for telling me Apo! Maybe I can get a job in Canada and try it out!!

Kayb, Thanks for telling me about Salease and where to get it. I can use it in the meantime to protect my gums until I figure this stuff out.

oceangirl654 · April 2015

Kayb, Did you get dry mouth from tamox or from some other drug?

oceangirl654 · April 2015

Hi Kayb, Have your teeth and gums been ok with it? What gum do you chew? Thanks!

oceangirl654 · April 2015

Thanks for telling me!

SweetThing · April 2015

I have dry mouth from the at Tamoxifen, my dentist warned me about it. He recommended that I use toothpaste and mouthwash for dry mouth. You can use Biotine or Act, the both help a lot. I also found mints in the toothpaste section that you can leave in your mouth at night, they kinda attach to your gumlime and dissolve through the night.

oceangirl654 · April 2015

Thanks so much for telling me! It helps to hear from others who have this as well. I really appreciate it!

oceangirl654 · April 2015

Hi GG,

Do you also avoid dairy products or is the Lactose filler in tamoxifen something entirely different? I was just wondering because I'm wondering if I should make the effort to try to get Apo brand. I am not allergic to milk as far as I can tell. I have milk every day and I feel fine. But after I have tamoxifen my mouth instantly starts parching. Anyway, I was just wondering what your experience was so I can try to figure out if Apo will help me. So far Mylan is just as bad as the other brands.

Thanks for your help. I really appreciate it!

Teus · May 2016

Hi, there - I've stumbled onto something for tamoxifen-caused dry mouth that has knocked back my discomfort by at least 50% over the last three weeks - it would be awesome if it works for others. My naturopathic physician prescribed 'bittersweet elixir - 3/4 tsp in 1 oz of warm water, daily 5 minutes before a meal - she says "Bitters get all the digestive juices flowing. I primarily recommended them to improve digestion. Getting the saliva moving helps digestion. Improving the dry mouth is an added bonus." You betcha! The first time I took the bitters, the effect was instantaneous - it was as though my salivary glands stood up and saluted! I noticed improvement right away, and gradually it's getting better. I started on Tamoxifen in January, and noticed dry mouth within 2 weeks. It got increasingly uncomfortable, couldn't get relief, was starting to wake me up at night...my oncologist was puzzled (it's not a side effect of tamoxifen). But my NP sourced a study (I haven't been able to find it, I guess she's got wider resources) where, if I've got it right, some 8,000 women were surveyed re tamoxifen side effects; 125 reported dry mouth. Vindicated! We are special!

oceangirl654 · May 2016

Hi, This is great to hear about! Can you buy it at a regular health food store? And do you use it three times a day? It is good to hear that it is not completely rare to have dry mouth on tamoxifen because all the doctors said it's not a side effect and that made me kind of worried. I never felt a dry mouth ever in my life until this! So far I use ACT toothpaste and it helps a lot. If my mouth is dry in the middle of the day I'll brush my teeth with it and it gets a lot better. But it doesn't completely get rid of it. I'd like to try this elixir. Do you also have digestion problems, and has it helped them? Thanks so much for sharing this info. I hope I can find the elixir!

Jewels55 · September 2018

Hi there...I have dry mouth on Tamoxifen as well. Mine is generally only at night but it does wake me up. Definitely going to try some of the remedies in this thread. Appreciate the discussion!

justwondering · October 2018

I am on day 2 of tamoxifen. Manufacturer on label is Zydus. I noticed the dry mouth/thirst yesterday and today. Starts a few hours after I take my dose. I found your post because I googled dry mouth with tamoxifen. knew it wasn’t in my head. The squeezy headache I’m having started with the first dose too. It is Fall but quite coincidental.

Lomlin · December 2018

Hey oceangirl, yes I have dry mouth!! I didn't have it until I got a refill on Tamoxifen. The manufacturer I am using now is Teva, the one before that was Actavis, I didn't have dry mouth with that one. I drink a lot of water and it doesn't really help me. My taste buds are so off that my coffee tastes like crap. I take my dose in the morning, but I have dry mouth all day and through the night, so annoying. My lips are so dry, using chapstick hasn't helped like it usually did.

gb2115 · December 2018

Hi LomLin--have you tried Biotene? I find the gel helps a little. I have irritated gums off and on because of the dry mouth which started after radiation and hasn't been helped at all by tamoxifen. The ACT lozenges are also nice, but the relief only last as long as the lozenge does, which isn't very long.

Lomlin · December 2018

I will have to give Biotene another try, I usually don't use mouth washes, so full of alcohol which is drying, with the exception being Biotene with no alchohol. Thanks gb2115

Lomlin · December 2018

I used the Biotene spray, works great thanks gb2115.

gb2115 · December 2018

Great!!!

Tamoxifen and dry mouth?

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