Tamoxifen and digestive issues and nausea

Jilled1965 · July 2017

Has anyone else had issues with extreme nausea and digestion issue after starting Tamoxifen? About 8-10 weeks in I had horrible diarrhea 6 weeks followed by constant nausea and lack of appetite. I have always had digestive problems and attributed it to yet another GI issue.

After consulting my GI Dr, and numerous tests finding nothing I asked my medical oncologist could it be Tamoxifen. He said it was doubtful, ran some test to rule out anything my GI doctor did not. As a test he then had me stop taking Tamoxifen. Within a week the nausea and all GI issues were gone.

Unsure if that was just a coincidence, my medical oncologist had me try Tamoxifen again, just to see. 5 weeks later the GI issues, including nausea were back. He is now talking about removing my ovaries so I can try the post menepausal medications.

Has anyone else had this problem? He insists reducing from 20 mg to 10 mg a day is not effective.

Moderators · July 2017

Dear Jilled1965,

Welcome to the community. We are sorry that your GI issues have brought you here but so glad that you reached out. We are inserting a link to one of our main site's page on Tamoxifen Side Effects. Feel free to send us a PM if you don't hear from others and need some assistance on where to find some similar stories. We hope you will find some support and information that will be helpful. We hope you will stay connected here. The Mods

mara51506 · July 2017

JIlled, do you take it in the morning? If so, you may find some relief if you take it at night. I have friends with BC who take tamoxifen at night swear by this when it comes to avoiding some of the GI side effects. They say they sleep through most of those. Of course, if you are taking it at night, then hopefully another person can suggest something if they take the drug. Good luck.

ShetlandPony · July 2017

Hi, Jilled. Another thing to investigate is the inactive ingredients, i.e. fillers and dyes, in your generic tamoxifen pills. Different manufacturers will have different ingredients and/or different amounts of them; for example, more or less lactose, or a different dye. If it happens that your GI issues are from one of the inactive ingredients, switching brands could help. Though a bit time-consuming, you can search on the internet or maybe ask your pharmacist to find the ingredients list for each brand (Roxane, Teva, Mylan, etc.). To try a different brand you will probably have to get it from a different pharmacy. You will need to call each pharmacy in your area and ask what brand of tamoxifen they get.

By the way, if you decide to pursue using an aromatase inhibitor instead of tamoxifen, you might talk to your onc about starting with ovarian suppression using Lupron in order to try the aromatase inhibitor. This is reversible, since you can stop the Lupron. Then consider the permanent option of removing the ovaries later if that goes well. Or using Lupron until you reach menopause, depending on your age.

Jilled1965 · July 2017

Thanks for that. It's not the first time that has been suggested. I have crazy allergies to fillers and dyes so that may well be the culprit. Currently I'm taking Mylan but I've heard some people have less problems with Teva.

We have discussed Lupron to test my tolerance for armotase inhibitor before doing surgery.

Jilled1965 · July 2017

First round I took in the morning, second attempt at night because I was hoping I'd sleep through any effects. Both caused problems.

exercise_guru · July 2017

jilled this is purely antedotal I have used two different brands of Tamoxifen on the Mylan brand effects I have are diarhea and GI problems I never thought of it linked to Tamoxifen but yes that has happened for me. I am going to take a week off and see if this clears up as well.

On the Teva brand I don't remember having gut problems but I did have other side effects. I too have a very difficult time with additives even in vitamins I have to only buy certain brands.

I would certainly consider ovarian suppression and trying an AI before I just went straight for an oophrectomy. In the TEXT study and the SOFT study they attributed the majority of side effects more to the oophrectomy and suppresion than to the tamoxifen. I can attest that even without Tamoxifen I have a ton of problems with side effects.

Jilled1965 · July 2017

It took about 3-4 days off to get it to clear up for me. I was taking anti nausea medication at night and was able to stop 3 days after I stopped the Mylan brand Tamoxifen. I was able to get a refill of the Teva brand today so I will try that and see how it goes. Trying to avoid surgery if possible.

KBeee · July 2017

yes!!!!! I was constantly nauseas on tamoxifen. Every time I had a brief break from it for surgery, the nausea disappeared. My husband figured that one out. I think it was causing severe reflux

Jilled1965 · August 2017

12 days on the Teva brand and the nausea and GI issues are mostly gone. Yay! However now I am constantly aggravated and anxious. I feel a little paranoid and loopy. Not sure any other way to put it. I'm typically not quick to ire, in fact nearly impossible. Now any little thing sets me off.Also really absent minded. Is this an effect that will subside?

Michelle_in_cornland · August 2017

Take tamoxifen with food, get plenty of exercise and split your dose between morning and night. That has helped me. I take 10mgs AM and 10mgs PM. I take Tums too for calcium and it helps if I had any digestive issues. Walking 5 miles per day has been my saving grace.

farmerlucy · August 2017

I had nausea for a week or so each time I started it. Effexor really helped even out my moods and helped w hot flashes.

I've had a few years to notice the anatomy of a hot flash. First my heart starts racing, then I get a wave of nausea, then the heat builds, then I'm dripping in sweat. Fun city, for sure. Takes about 4 - 5 minutes in total . Still flashing a couple dozen times a day. Fun city, for sure.

Jilled1965 · August 2017

thanks, 1/2 doses 2x a day I haven't tried yet.. perhaps that's next.

Lula73 · August 2017

Jilled- your new symptoms may reflect that the tamoxifen is working. Those are all common side effects. With the constant diarrhea you were having with the other brand of tamoxifen, the meds may not have been absorbed properly and therefore was not effective (or as effective as it should have been). Without the diarrhea the meds are being properly absorbed and are able to work as they're supposed to.

I wish I could tell you that the foggy memory/thinking and agitation went away after awhile. Anti-anxiety or antidepressants can help with the agitation. The foggy memory/thinking just is what it is. If I'm talking with someone or to a group and can't remember. I just laugh a little and say I'm really sorry - I have tamoxifen brain and totally lost my train if thought! (I do work in the medical field so at least everyone knows what tamoxifen is.) outside of work I'd just say I'm really sorry, one of the medications I'm on makes me forgetful!

Jilled1965 · August 2017

Thank you Lula73, it's good to know I'm not "actually" losing my mind. The idea it means it's working doesn't thrill me, but the comment that it wasn't being absorbed makes total sense. It's really making work difficult for me. I will be giving a speech this week. That should be very interesting. Perhaps not well received, but interesting none the less. Lol

Jilled1965 · August 2017

ok the foggy brain got so bad I got turn around driving my six mile trip home from work. It's a drive I've made for 20 years. Scared the hell out of me! Got home and was a blithering, sobbing mess. My anxiety, aggravation levels are so high I can't function at work and can't sleep at night witch adds to my foggy brain.Very glad the GI trouble is gone but really having difficulty managing these other issues.

Lula73 · August 2017

Oh Jilled, I'm so sorry! I've done that too. It is scary and brings on a case of the 'what ifs'. Has your dr prescribed you anything for anxiety? If not, it may be a good idea to help with the anxiety the memory issues are bringing on. It will usually help you sleep as well. I take clonazepam as needed. In the meantime, GPS is your friend no matter where you're going, post-it notes are your new decor, and note cards with your talking points/important stats and quotes/phrases for any planned conversations/presentations are your handy new companions.

You can also consider an oophorectomy or taking Lupron to shut your ovaries down and switch from tamoxifen to an AI. It will take a while for the side effects from tamoxifen to subside but they do go away eventually. Sending positive thoughts your way!

Jilled1965 · August 2017

I have a standing Xanex prescription .25 mg only that's on hand for panic attacks when I fly. He said it was ok to take that but only to take occasionally. He doesn't want me to take regularly or prescribe anything else as they're too addictive. He said my symptoms - the GI especially and now the anxiety/fogginess are very unusual. He's recommending reducing dosage to 10 mg which annoys me as I asked 2 months ago if we could try that and he was against that idea. Of course I'm easily annoyed right now, so perhaps that's it.

ClaudiaMetz · August 2017

I started taking Tamifen after telling my doctor that being so dry it was painful to have intercourse. I switched from Arimidex. Mine is the 10 mg tablets. I have been taking it for about 2 months. I have always had issues with my colon and it doesn't take much for me to have loose bowels; however, after about 3 weeks it really got bad. I have just had my colonosopy and it was okay. I call my oncologist office and they told me to stop it for a week. I was also doing research on what else may cause it. I was using the flavored drops in water and it said it could cause it. I stopped that. After a week I was better. I then went back on it and now it has started again. I use a mail order company for my prescriptions so I don't know if I could request a certain brand. Is Treva a brand? I take mine at dinner and the problem only seems to happen in the morning. Not sure what to do. Maybe splitting them and give that a shot.

ClaudiaMetz · August 2017

I was looking online and it says that Melatonin was okay with Tamifen; however, it did say a good brand was better and caused less side effects such as loose bowels.

Jilled1965 · August 2017

I think it's time for a new MO. Mine didn't believe Tamoxifen was causing digestive issues for me. Had me stop for 3 weeks and restart. My disgestive issues cleared up about a week after stopping, started again a week after restarting. I stopped again after doing some research on fillers and started the Teva brand. Digestive issues went away, but a whole new set of SE's came on. Anxious, Aggitated, Angry and Annoyed. My MO insisted it was not likely the Tamoxifen causing anxiety. He would reduce me to 10mg for a few months though. (3 months ago when I asked if he could reduce he said no)

Earlier this week the anxiety got so bad I literally ended up in the ER thinking I was having a heart attack. Chest pain, nausea, shaky, light headed etc. They kept me overnight and ran all the standard cardiac/pulmonary tests. All clear, must be stress. When I asked my MO could the Tamoxifen be contributing to my insane anxiety levels, he said no not likely see your GP. My GP prescribed Prozac. I advised my MO that my GP now prescribed Prozac, he said OK. When I went to pick it I got the warning from the pharmacist about Prozac and Tamoxifen. I contacted my MO and he said "Oh shoot, I forgot" and called in a prescription for Effexor.

I'm off Tamoxifen for 10 days now and the anxiety levels have reduced some but not before they got worse. I know my body and I know my personality and this stuff is wreaking havoc on both. I think I need to find an MO who doesn't deny these are potential side effects and will work with me on alleviating these SEs. Talk about causing stress.

ShetlandPony · August 2017

"Oh shoot I forgot" ??!! I agree that looking for a new MO would be a good idea.

Jilled1965 · August 2017

I know, right? To be completely fair, this is exactly what he said...copy and paste from his message.

"Shoot. Was not thinking. Yes, Prozac can interfere with the metabolism of tamoxifen to its active metabolite. There are a limited number of medications in that category that do not have that problem."

Yes I know, I've read that too!

That is kind of the nail in the coffin for me. I was thinking I need to find someone who believes these are side effects and I'm not just having a bad case of IBS and then going batshit crazy. Every time he tells me, that's not a normal side effect, or I doubt that's a side effect I want to tell him to GOOGLE THAT SH*#!

Now I'm thinking I need find someone who pays attention. Mind you his remark was prompted by me after I questioned his "OK" response to Prozac. Wonder if I hadn't asked if he would have eventually figured it out? I know I am ultimately responsible for managing my own health but a little help from my Dr would be nice.

Tamoxifen and digestive issues and nausea

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