Bottle o Tamoxifen
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Hello, ladies!
I haven't posted in a while. I think I have settled into the longer-term side effects of Tamoxifen now. I've been taking it for over two months and haven't seen changes in the last month or so, except for not having the dry eyes that I was experiencing initially. I met with my MO a few weeks ago and confessed to only taking the 10 mg instead of the full dose. My rationale is that the insomnia is absolutely horrible with the lower dose and that I can't imagine how impactful it would be on daily living with a full dose. My MO bought into it but suggested I try a higher dose at some point. I've been prescribed an anti-depressant in a very low dose which has the side effect of drowsiness. But, the SEs from that appear to be absolutely horrible and I'm not adding to my misery. So, I take 10 mg of melatonin and sleep between 1-6 hours a night. And then I drink a giant cold brew each morning. I am hypothyroid and have never had sleeping issues -- ever. I'm a 9 hour a night person under normal conditions. I have been playing tennis like a mad lady with the hopes of tiring my body out and not gaining the weight that comes with the drug. The heat index was 105 last weekend and I played in four matches during a tournament. It was physically exhausting but didn't impact my sleep pattern at all.
If only this drug could be used for college kids during finals week!!!0 -
TinktheTonk, insomnia can be a side effect of Tamoxifen. The most usual GI SE is constipation, due to how dehydrating Tamoxifen is. If you are having symptoms of IBS-C, it may be the Tamoxifen and not IBS. The usual advice for the constipation associated with Tamoxifen is to drink lots of water (I drink about 10 glasses of water plus my AM 3 to 4cups of coffee daily) and get enough fiber in your diet (getting 6 to 7 servings of fruits and vegetables, some cooked, some dried, and some raw is working for me).
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lala1
I have been on Tamoxifen for about 4.5 months now. Around the end of the second month I noticed strands of hair caught in my fingers every time I washed my hair, which is still happening. I also have very fine, straight hair, and interestingly enough, I also developed a weird curl on one side of my head! This drug causes such an odd array of side effects. I'm managing them, 4 months in, but the thought of dealing with this for 5 to 10 years is kind of a drag.
Hope everyone is staying safe.
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TinktheTonk--I also had sleeping issues with Tamoxifen. I ended up ordering a very low dose of melatonin from Amazon. It was 0.3mg which sounds crazy since most people take as much as 10mg often but my holistic doctor told me that too much melatonin can have the opposite effect. I would take it every night till I was sleeping well and then slowly taper off till I my sleep pattern was good and then go without. Eventually my sleep would get bad again and I'd go back on it but mostly it was just to get over a hump. I've actually started taking it again with all this coronavirus/election crap going on because I tend to lay awake arguing in my head about stuff! Lol. Now I'm back to sleeping my usual 8-9 hours a night.
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I posted elsewhere and think its better here.
Have been on tamoxifen over a week and the last three days are awful. Stomach cramping day and night. Started out with no problem
Can I hope this will get better?
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Rebalilly, I have not had the stomach issues but several people have posted reports that theirs did get better. Not to give false assurance, others did not. Getting personal, could the cramping be from constipation, a very common side effect of Tamoxifen? Since Tamoxifen is dehydrating, drink lots of water and other fluids every day. I also eat some dried fruit mid afternoon with some of the water and, in addition, I pay more attention to getting 5 to 7 servings of fruits and vegetables each day. I tend to notice a difference if I slack off on getting enough fluids.
Hope you feel better soon.
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Rebalilly - I took tamoxifen for 5 years after lumpectomy and radiation 2009-2014. When you take it might make a difference. I found that my tummy tended to gurgle less and I slept better if I took at bedtime vs with breakfast. I was already in menopause. As I read the various posts, it seems like Tamoxifen is harder on those who are premenopause.
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thanks Beaverntx and BlueGirl
I have been feeling constipated and bought some Ducloex and prune today. Also, I take it in the morning and going to try bedtime. I appreciate you gals! I am postmenopausal and was hoping Tamoxifen would be easy on me I have osteoporosis so I can’t do AI’s
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Rebalily, I second what Beaver and BGR said. I never had issues with constipation until I started tamox. That was one of the first issues! So make sure you are taking in plenty of fluids (so you can pee all night, hooray!) And up your fiber game. Good luck!
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Hi there, I’ve been in Tamoxifen a year now and believe me, I haven’t seen any weight loss! Lol. What I do have is terrible leg cramps that get to me at night. Then all day, my calves are killing me. Anyone else
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PetuniasNanny: I have been on Tamoxifen for 5 months and have been lucky to not have the leg cramps at night. I’ve been taking magnesium as some have suggested, so perhaps that is helping? I do, however, have stiff and painful calves all day. When I go for a walk, I’ll feel some cramping, but can usually walk it off. I also get a really tight feeling around one of my ankles, that I can also walk off. The side effects of this medication are truly weird
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Magnesium really helped with leg cramps from Tamoxifen. There are many formulations. I switched to mg- glycinate after reading one post, and I think it did work better than the citrate form. Tried a malate form after reading that many atheletes use it, but it did not seem to work as well for me. Tried a gel form of the glycinate brand I was using, but the pills were HUGE!!! Since they did not seem to work any better than the tablet form I was using, I went back. I have been using Arimidex for almost a year now rather than Tamoxifen, and just recently noticed a slight twinge in the calf occasionally. Didn't think the AIs did that.
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Hii everyone! Hats off to everyone for all the advice , encouragement & support! Although I don’t post after, I do follow each day.
My question is has anyone had virtigo while on tamoxifan. I have been on it for 6wks now and the other night after rolling over to left side in bed woke to the room spinning and a falling feeling. This continued for a couple days when laying on left side. Perfectly fine walking, sitting etc. No headache, earche , stuffiness. I will be making a doc appointment but just wondering if anyone else had experienced this. Of course my mind goes to brain Mets.. Thanks everyone
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Dup403, I have occasionally had some vertigo and have heard that others have reported it. Rule of thumb has been anything new which lasts longer than two weeks should be investigated. Good for you for checking it out!
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Years ago before any BC or treatments after the third day of vertigo I went to urgent care and was diagnosed with benign positional vertigo - they do not know what is causing it or why things in inner ear are floating around, but benign meant it would clear up on its own. After I left I realized I forgot to tell the DR that a couple of days prior to the onset, I had tried to roll down sand dunes like a little kid. If your vertigo is not from the drugs. It did start clearing up over several days. Hope it clears up soon
https://www.mayoclinic.org/diseases-conditions/ver...
https://www.webmd.com/brain/home-remedies-vertigo#1 There is also an exercise a partner can help with by slowl rotating your head from one side to the other
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You: 'I rolled down a dune and that caused a really serious result that was unpleasant'
Me: 'ooo, rolling down a sand dune sounds fun!'
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Lumpykins, tamoxifen can cause dehydration, thus the constipation and I have read that dehydration can make a tendency to vertigo worse. I was just reading up on this because Hub gets very ill after certain motions and I was reading up on vertigo and it turns out he does not have it. He has motion sickness. If you feel dizzyish it can be vertigo. If you start barfing, it's likely motion sickness. Apparently there's a difference. Hub is of the barfing variety. Dehydration makes both worse. Drink water while rolling down sand dunes.
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Lumpykins I call it getting "spinny headed" when I get a little dizzy from the Tamoxifen. But they are moments, not hours or days. I experienced a bout of vertigo once when I was helping hubs seat a drainage pipe and I spent half the day bobbing up and down into a 3 foot deep trench to drop the pipe. It definitely wasn't anything as wonderful as rolling down a sand dune!
Runor lol !
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Hi everyone,
I hope you are all staying healthy and safe with the wildfires, hurricanes and covid-19 this year has been a challenging one for all of us.
I had a question about different brands of Tamoxifen. I know this has been talked about before, but I don't have the energy to look through old posts now. Which brands of tamoxifen have worked for you and which ones did not agree with your body?
I have a friend who is thinking about switching brands do to horrible side effects.
Thank you all Hugs to all.
Take Care,
Sara
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Sara, I have not noticed a difference with different brands but others certainly have. As I recall which brand works best is a very individual matter. My suggestion would be for your friend to talk with the pharmacist and try another brand.
What works for one does not necessarily work for another. I remember reading a post about two sisters, the brand that worked for one did not work for the other so even siblings do not react the same!
Best wishes for your friend to find fewer side effects and to you for asking!
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Sm627, I am going to be the fly in the ointment. I have read, repeatedly, that one brand 'works' for someone while it does not work for someone else. Every time I've read this my inner skeptic has been, well, skeptical.
First off, what do we mean when we say 'works'? The active ingredient and the amount of the active ingredient in tamoxifen tablets is the same, no matter who manufactures them. The chemical components of tamoxifen DO NOT CHANGE from maker to maker. Tamoxifen is tamoxifen is tamoxifen. Period. What does change might (might!) be the other guck they put in the tablets to actually make them into little round blobs that hold together in pill form. It's like a cookie, the base ingredients are the same, sugar, butter, eggs and then you can add raisins or chocolate chips or oatmeal or god forbid, dates! But a cookie, no matter how it ends up, starts out with the base ingredients. Same with a tamoxifen tablet. They are all based on a 20mg dose of tamoxifen + other stuff. So HOW can that 'other stuff' make that big a difference? Has anyone even researched the differences between brands? Do we even know if the different brands are made in different places, or do they all come out of the same factory with different brand names stamped on them? To say that one brand didn't 'work' would reasonably mean that one brand allowed women to have a recurrence of cancer. How long would doctors keep prescribing a brand that had a track record of literally not working?! So we have to be careful, I think, when we say one brand does not work. I think it would be more accurate to say one brand seems to be less tolerated by some women. Again, what ingredients in different pills could lead to this difference in tolerance?
As I have journeyed through tamox I have found that the side effects are like the tide. They roll in, they roll out. It's like a revolving door of unpleasant surprises. I'll have some side effect that drives me bonkers for weeks or even months and then it will ease off and something new and equally miserable will take its place. All of this variability and misery on the SAME brand of tamoxifen. So, is it the brand that is causing me to be miserable? Or is it just that tamoxifen itself can be pretty miserable and I would be feeling the same no matter what brand I took? I honestly do not believe that changing brands would make things better. I know many people say it does, but that is anecdotal evidence. Which, I have to say, I often put quite a bit of stock in. Where there's smoke there's fire and all that.
Having said all that, there was recently a global shortage in the tamox supply (it might still be going on, I don't know!) and I was given a different brand than I normally get. I did notice a difference. This new brand dissolves in my mouth almost instantly leaving an unpleasant taste for me to contemplate as I go to bed. Not loving that. But the leg cramps I had on the original brand, I still get on the replacement brand. The falling out hair and rapidly aging skin, still get it on the new brand. The aching bones and joints, the lack of energy, same, same and same.
So, I guess Sm627, my questions is, what actual ingredients in a tamoxifen tablet can have that kind of physical impact? Because tamoxifen is the one ingredient in all brands that does not change. Can flour, sugar and gumbo really have that big effect on tolerance? Again, my inner skeptic is thinking that just doesn't add up. I might be wrong. I might always be wrong! But.... I think this drug is just very miserable, period. I think switching brands might only be sensible if some research is done into what exactly each brand puts in their pills, all of those ingredients being pretty inert, except one: the tamoxifen that each one carries. There's just no getting away from it!
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Runor, my use of the term "works" was in relation to whether or not a brand change encourages a person to continue taking a medication, not in relation to a drug's effectiveness. Of course a drug not taken is not effective for its intended purpose.
That said, if someone believes they are more comfortable with one brand of Tamoxifen over another, I encourage them to seek out that brand. i support almost anything that helps sticking to the course as we all move through the challenges Tamoxifen provides. And it is possible the fillers in the tablets could vary enough to make a difference. That has not been my experience, but I know many others have reported it as theirs.
I'm in full agreement that the cyclical nature of the side effects does not help with the exception that there may be hope that "this, too, shall pass." Of course, the fallacy of that is that this too is likely to return.
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Beaver, I agree that the phases of tamox side effects do pass, and then the damn things come back! Like a boomerang! You can see it head off into the distance and you heave a sigh of relief, good riddance stupid side effect and then, whoosh, whoosh, whoosh, you hear it coming back and see it whistling in your direction with just enough to time to utter, oh crap, before it whallops you.
It would be interesting to know if tamoxifen that comes from different companies is indeed manufactured with different fillers? Or is a tamox tablet identical no matter the manufacturer? I bet a pharmacist might know the answer to this. Or know where to look. I do know my original tablets were much harder. They were much harder to cut in half without shattering. But they remained whole until I swallowed them. The replacement tamox was softer, split very nicely and neatly, but dissolved almost instantly in my mouth. Blech. So there is a difference...but WHAT is the difference? It's a mystery!
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Hey Runor,
I believe FDA regulations require disclosure of ingredients in medicines. It's a mystery to you and me because we haven't done our research, but the information is out there.
As for how different brands affect different folks - I've been assuming this is like hormonal birth control. All estrogen-based hormonal birth control works on the same mechanisms, yet a person can have very different side effects with different brands and there's now way to know but to try.
Sara -
I spent a fair amount of time scouring the brand posts because I was having such a hard time tolerating tamoxifen. I didn't find any one brand more consistently recommended than others, and I did see that a lot of women did find relief once they tried different brands. I ended up trying 4 different brands - I talked on the phone with an Express Scripts pharmacist each time, they would mark down the issues I was having with the brand I was on and look up a different one they could send me. For me, I had one major side effect which was fatigue/sedation, and none of the brands helped for that. I ended up going on toremifene, and I really think that having it on the record that I'd tried so many brands of tamoxifen was helpful because my doctor told me that insurance might make an issue with covering it for me (even the generic is $$$), but there have been no problems.
So I'd encourage your friend to speak with their pharmacists and try different brands, and to have hope that either one of the brands will work out, or she can maybe try toremifene also.
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Thanks for all of the information. I have found the Tamoxifen insomnia has improved.
Now I'm wondering about whether Tamoxifen can make neuropathy worse? I have had problems with neuropathy since I had AC, now I have noticed that my toes and fingertips seem to be more "tingly." I had so many problems with Aromatase Inhibitors, Don't know if I want to take the chance that my fingers and toes will get worse.
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TinktheTonk, my symptoms are more in my joints and may be related more to arthritis than Tamoxifen. Have read more concerns about joints the tingling in the extremities. Hope someone else can chime in...
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Tink, I echo what Beaver said, for me it's my joints and my whole body feeling more and more like a stiff, wooden statue, unable to flex and flow. I have become clunky, jerky, clumsy and slow. And fat. Oh my god the fat. All in the middle. I look like a mushroom.
Salamandra, I think birth control pills have varying amounts of different hormones (?) in them. Some are The Pill, some were called a mini pill. Birth control pills show an actual difference in the amount and type of hormone they deliver. But as I understand it tamoxifen is just one thing: tamoxifen. Plus various binders. There should be no other active ingredient in a tamoxifen tablet other than tamoxifen. But you are right, the Truth Is Out There (cue music from The X Files). Someone needs to put on their sleuth hat and big magnifying glass.0 -
Thanks Beaverntx and Runor for responding! I know all about the fat too. LOL!
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Re: tamoxifen and neuropathy, I have had my own bout of severe nerve pain in my mouth, shortly after I started tamoxifen I had some dental procedures and a very slow recovery. I can't say that they were related, though, because I also had my first bout of Sciatica just before I started tamoxifen. I think it was the stopping the estrogen/progesterone replacement therapy abruptly that may have contributed, but not sure. I've started taking magnesium supplements and trying to adopt a diet to reduce inflammation in my body to help the nerves continue to heal in my mouth.
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I think I have read almost every single page of this thread from the beginning, but would like to jump in with a “thank you” from everyone that I have learned from and then a quick question.
I started Tamoxifen Sept 1st. Around the 2nd week I started to notice very “crampy legs.” From the top of the back of my legs to down behind my knees and even my ankle joints. Even the bottom of my feet cramped sometimes. Then my hip and tailbone started to become sore and almost a burning feeling upon sitting. Every muscle in my legs felt tight. I called my oncologist and I was surprised when she said joint and muscle pain were not a SE of Tamoxifen. I was not really worried until she said this because I had a very low grade/stage tumor (Tubular), low Oncotype score(7) and no node involvement...but now I am a little concerned.They are allowing me to take a vacation from the Tamoxifen for 3 weeks and ordered PT. I feel like I have started every suggested cure for my aches in the last few days (i.e, exercise, tonic water, supplants, stretching, Advil, etc.) Has anyone else had similar symptoms and/or their doctor tell them it’s not related?
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