your worst side effects from tamoxifen?

9lives70

as I get ready to likely take this drug I am curious the worst side effects many of you have had with it...( especially those of you that are pre menopausal)

In addition to the worst I would like to know the other SE's that were not horrendous but still not great :-)

Thanks for sharing!

warriorinpink94

For me the worst side effect has been the hot flashes. But if it helps to prevent more cancer I can take it.

I know you are worried about it but if you are at this point in your treatment you have already been through the worst. You can handle this too.

We are stonger than we think.

bvh2305

I started TamoxifenSaturday, March 11th. I'm waiting for the hot flashes to begin, hopefully not.

Anonymous

mainly the hot flashes, some achiness, insomnia, fatigue; but all tolerable and manageable. Definitely better than the alternative.

Anne

annoyingboob

I haven't had any hot flashes, but some leg aches when I first started which seem to be going away. a bit of insomnia, but I swapped to taking it in the am, so hope that takes care of that. exhaustion, which may just be post xrt. nothing horrific. fingers crossed.

id be curious to hear if anyone got dvt or stroke and what underlying health issues were if any?

Lovinggrouches

I've taken it since July of last year. I have hot flashes, insomnia, depression, hair started falling out but is better now. Pretty good amount of hip pain. Turmeric, effexor and ambien helps all of this. The meds I have to take to counter effects of one med, not counting vitamin d, calcium and magnesium. I will take it for as long as I have to though!

Partyoffive

hi I know I'm at a different stage then you but I wanted to tell you that I've been on tamoxifen for the past 31/2 years and have no terrible side effects. Some hot flashes and leg cramps but I feel great and don't let it interfere with my life. It's been very tolerable for me and I wish you luck.

Kristi

Lucy55

I take tamoxifen and have been very lucky and have no side effects ( that I know of !) from it ..I was scared to start taking it because I have trouble taking most other medications ..but it has been fine .

Penner

I've been taking it since December 1, and I haven't had a hot flash yet. The only side effect I have noticed is a pretty continual discharge, which is nothing more than mildly uncomfortable at its worst. I had thought it was going to kick me straight into menopause, but I don't feel much different so far.

annoyingboob

I forgot to mention DRY DRY DRY skin - my cuticles are extra brittle

Hopfull2

hi everyone. I just picked up my bottle of tamoxifen today. Wasn't sure to start tonight. But after reading some posts it can cause insomnia. And I already have trouble sleeping. So looks like I will start taking them tomm morning. I'm nervous. Nervous of SE. Just wish I didn't have to take them.

Hugs

Marcasey

I've had hair loss, leg cramps, hot flashes , depression and fatique with tamoxifen. At this point, I'm debating whether to come off it in order to start living again. Everyone experiences drugs in different ways and you just have to take the leap.

We have to support those who have bad SE's like me and get doctors to recommend altenatives or ways to make these SE bearable. Most women have minor side affects from tamoxifen. I'm envious of them.

I have to make a tough decision now about stopping the drug, something none of us want to do. One thing to recognize and something that affects me is that you should not take Wellbutrin while on Tamoxifen as it can impact its effectiveness.

Nancy2581

I had hot flashes and leg cramps for several months, but honestly I think my body has adjusted because I really don't have any symptoms now.

Nancy

Annette47

I’ve had hot flashes, leg cramps, thinning (not badly but I notice it) hair, an annoying vaginal discharge, and some insomnia but also at other times, fatigue that helps me sleep great. The discharge is the only thing that is pretty much constant, the others cycle on and off, with usually only one going on at a time.

None have been severe enough to be more than a minor annoyance, and some, like the leg cramps, I've learned to cope with (take magnesium and be sure to stay well hydrated).

Wingsofglass

I have had my Tamoxifen prescription for over a month and been too afraid of side effects to start taking it. I know I need to get started, do you or anyone have any recommendations on the time of day to take it? If I took it at night would side effects be less during day, or would taking it at night keep me awake with side effects?

ual0307

wingspanglass,

I think it depends on you when to take it. Night or day.

Try not to be afraid. Stop it if it gets terrible. But it probably won't.

The leg cramps suck. First time is surprising (mine was middle of the night). But again manageable.

Good luck.

Shaz1970

Hi everyone, I've just taken my 5th tablet, in the last 2 days I've had hip pain, backache, and knee pain. Nothing else out of the ordinary is it too soon for side effects? Is it just a coincidence?

tsoebbin

great advice ual0307.

"Try not to be afraid. Stop it if it gets terrible. But it probably won't."

pupmom

Only SE for me is hot flashes. These have gotten much less severe over time.

Artista928

I've got tumeric-curcumin with black pepper and an rx for gabapentin 300mg for warm flushes. Haven't tried the rx yet. Tumeric-curcumin with black pepper is also reported to help with hair loss, which I lost a ton on Letrozole. Tamox was kind to me with that. Seems like as soon as I get the supp to help something, it gets better on it's own. I was on Letrozole for 5 weeks, just stopped it yesterday. I'm going back on Tamox on Mon- giving myself a few days to get Letro out of my system.

My advice- don't look for things. As we get older, we are bound to have aches and pains not related to these anti-hormonal meds. Just take it and go on with your day. If something does become really noticeable then note it but I remember for me the moment I popped the pill I was waiting for some se to kick in. I may have over blown how bad something was based on reading so much bad effects on the drugs. So don't expect anything bad.

9lives70

Party of five:

9lives70

Party of five: it's awesome to hear you're doing so well do you know which company manufactures and distributes your tamoxifen which brand?

Lucy 55--same question;

Lula73

Started Tamoxifen 3/4/17, premenopausal. Side effects for me are manageable: developed a red super itchy-burning-stinging rash on back and shoulders (Zyrtec or Xyxal takes care of it so I tak the 2 meds together now), oily skin on my face, acne along jawline/hairline (changed my skincare routine and products), dry lips (chap stick is my friend), and my hot flashes disappeared. Yes you read that right-I was having hot flashes prior to all this BC mess and on Tamoxifen they are gone-yay!!!! If the side effects are manageable it's worth taking the Tamoxifen because you never know which group you'll fall into-the responders or the non-responders. Hoping I'm a responder

pupmom

I had some pretty bad hot flashes for about six months. Now, a year after starting Tamoxifen, I have few severe hot flashes. The body needs time to adjust.

MagicalBean

I started Tamoxifen a little over two years ago. Very dry skin and occasional chills are all I have to report.

farmerlucy

Joint stiffness - but that may be arthritis. Artista - welcome back from Femaraland. I lived there for seven months. Not fun.

annoyingboob

i had a weird thing where part of my postop areola went white and painful. resolved in 2 days after warm compresses, aspirin, and massage (and stopping tamoxifen). i wonder if it was vasospasm or a little clot from tamoxifen? anyone else have any vascular related effects?

aside from that, all my other se were tolerable - aches, fatigue, dry skin. but clots are a deal breaker for me.

Artista928

Glad to be back except------ I'm having periodic lower abdominal pain, mainly off to the lower right side and around my kidney area side and back area. Did abdominal u/s which shows liver, gallbladder, pancreas and other than 2 cm gallstone and inability to really see the pancreas everything looks ok. So the thought became since it's lower abdomen that maybe it's my uterine fibroids. They can become larger and/or irritated on Tamox. There's also that small % chance of endometrial cancer or uterine cancer. So on 5/1 I'm doing a pelvic u/s which will show my female organs as well. I'm assuming if the resolve is hysterectomy that I can still take Tamox since no more uterus to monitor, but don't know for sure.

I'm enjoying mostly my hair not falling out in droves by mearely lightly touching it, and the head and joint stuff. I'll ask about aromasin since I read it is a different mechanism than arimidex and femara but any sign of hair loss and I stop immediately. Took a few days after stopping letro for my hair shed to become more like normal.

farmerlucy

Artista - I suspect that pressure you're feeling is your uterus reacting to Tamoxifen. I had the same thing. I recently had a TAH - total abdominal hysterectomy, and I'm still on Tamoxifen. 359 days to go.

Artista928

Is total abdominal hysterectomy removal of uterus, ovaries and fallopian tubes? Glad you can still take it afterwards. Other than this Tamox is much kinder me than Letro was that's for sure.

farmerlucy

hmm, I had my ovaries out a couple years ago, so I'm not exactly sure if that includes the ovaries or not.

Me too. Much kinder.