Really Frustrated with New SE

Anonymous

I went off Arimedex because of quality of life issues with bone and joint pain and other problems with vaginal atrophy.  My onc put me on Tomoxifen.  Arimidex SE's have subsided, but now I am more emotional, and have been having a lot of leg pain.  My legs feel like achy wieghts, and I hate this feeling.  I'm hoping that getting out and fast walking, and OTC pain meds will help this. But it feels horrible. I've looked up some info on Tomoxifen and it does say leg pain is an established SE.  Tamoxifen & Leg Pain | LIVESTRONG.COM

Any insight on this anyone?

Barb

Celtic_Spirit

I took tamoxifen for a little over two years. Yep, lots of leg and foot cramps and pain, but never enough to stop me from hiking, racquetball, zumba, etc. I never had emotional issues with it. I don't need medication to make me crabby and surly; it just comes naturally! LOL! Just started arimidex on Christmas Eve. So far, a little more widespread joint stiffness, but it's liveable.

If you have bad leg cramps with tamoxifen, try taking a potassium supplement. My onc recommended that, and it worked wonders for me.

everyminute

I didnt notice either with tamoxifen but I had some wrist issues.

Quinine (tonic water) is supposed to help with leg cramps

Give it some time, sometimes the first few weeks of a new drug can throw you for a loop!

Celtic - I started Arimidex last week too - so far so good.

208sandy

Just a note here - be careful of potassium supplements - check it through your primary care - if you have any heart issues (I ended up with some after chemo) potassium can be dangerous.

Hugs, Sandy

Bugs

Barbe, this may be a side effect that dissapates over time.  I am more apt to get muscle cramps, but if I keep up on my calcium/magnesium that seems to help.  I would give it a few months to get your body used to the switch.  The good news is that Tamox sometimes has the SE of vaginal discharge (clear) which could help your atrophy issue.

elmcity69

hi Barb, I was on Tamoxifen for only 2 months and I had leg pain, usually, "charlie horses" in the middle of the night. My onc dismissed the idea it was the T, but once I was on Armidex, smooth sailing.

Good luck with this. I did find that exercising helped the leg pain.

Sometimes, I want to tell these doctors that we, the patients, really DO KNOW our bodies!!

Anonymous

elmcity69 ~ Wow!!  The charlie horses in the middle of the night were so excruciating, I wake DH up crying Ouch ouch ouch!!!!  I'm going to try sticking it out a little longer and keep up with my B6 supplements at bedtime, drink a lot of water and green tea during the day, and increasing my walking and exercise.  I'm very torn about joining a gym right now and I'm hoping the workouts I do at home along with the 2 mile a day walk will help alleviate this.  I remember my mom used to get leg cramp in the back of her leg and took vitamin E for it and she swore it helped.  So my plan is water, b6, vitamin E, Calcium, Fish Oil, Vitamin C, and Green Tea, fruit and veggies. 

Thanks My Stage III  Sistas

pupfoster1

Hi Barb,

I'm sorry you are having a tough time with the SE's.  I'm on Tamoxifen too and so far I haven't had any emotional issues (but as CelticSpirit said I'm already crabby and surly on my own--lol!) but I have had leg pain.  Not so much cramping, but my right hip area, which I may end up having to have checked out at some point.  

I hope your se's subside soon, NO FUN!!!!

Love,

Sharon

Anonymous

Celtic and Sharon,  I too am crabby & surly naturally, which I have not been really since BC.  I'm wondering if my emotions have been flat and disconnected from this ordeal, and only now I'm FEELING raw emotions again.  So I was wondering if this might have been a SE also from the Tomoxifen.  So anyway, whatever.

Barb

116

I stopped tomoxifen because of the excessive emotional instability and the insane charlie horses in the middle of the night. I had never had a charlie horse before and thought I had a blood clot or something. My doctor at the time tried to dismiss the tomoxifen connection (and my concerns), but my own research found that other women experienced the same issues. I believe what other women say, who are actually taking it, before I believed some insensitive doctor and did not allow him to make me think I was just imagining things. Tomoxifen can even cause delusions, like it did in me. My new oncologist told me that my SE were probably from the tomoxifen and once I stopped taking it I quickly stopped having these problems. I do not however recommend stopping tomoxifen. It was the right thing for me, but I worry about not taking it all the time since I am premenopausal and not taking anything else now. My oncologist told me not to beat myself up about it, that some women just can not take it due to SE. I wish I was not one of them.

charmainejensenvoisine

Ladies, just came upon this thread.  I have been on Tamoxifen since March 2011. One of the side-effects I get are charlie horses and hate them big time, as they are very, very painful.  I get them in my feet, and in my lower legs and it does not only happen when in bed at night, but at anytime of the day. For instance I was getting off of a community bus, and then suddenly I got a charlie horse in my left foot and nearly did not make it off the bus.  Oh another thing, I have not too often, but a few times have also had the charlie horse pain in my head (the back left side, and also the left side of head just above the ear).  Have any ladies had charlie horse feeling in their head.  Now this is incredibly intense pain, I have to put my hand up to the pain in my head and hold my hand there to try and control the pain or I am most certain that I would pass out.

I do not know where I read this, but somewheres'  I read that one can take calcium-magnisium (one tablet combined two ingredients) tablets and this is suppose to also help with muscle cramps, and charlie horse pain.  Have any of you ladies heard of this?   If yes, and I was to purchase this over the counter, wonder what dosage?

Thanks, Charmaine

jdeking

Hi Ladies,

I had these Charlie horse pains for awhile on Tamox also, but that had totally disappeared now. (I have been on Tamox for about 2 years). Really, all SE's have diminished a lot once I got past that first year mark and I don't have many at all now, except crazy menstrual cycles and uterine fibroids & cysts that are growing like crazy. Apparently Tamox stimulates estrogen in pelvic tissues, while it inhibits it in breast tissue. Crazy huh?

I was also told potassium for leg cramps but chose to eat potassium rich foods instead of taking supplements, and this seemed to help.

Bugs

The calcium/mag combination really helps me.  Charmaine, I also get them in my neck.  Ohh, the pain!!  Makes me want to cry.  I'm a horrible pill taker (except Tamox) and if I go too long without the calcium/magnesium I pay for it.

Anonymous

Charmaine, the calcium/mag combo has really helped with leg cramp SE of Tomoxifen.  Hopefully it will work for you.  Those head and neck charlie horses must be really painful.  I got on once in my neck when stretching on morning in bed.  Youch!!!

Barb

charmainejensenvoisine

Bugs and Barb:

Thank you so much for replying to my thread. What is the dosage of the calcium/mag that you both take? Sometime this month am seriousily considering going to my health store and purchasing a body.  This afternoon when napping, my lower right leg got a really wicked muscle cramp OUCH!

Charmaine

suzanneinphoenix

I just found this thread.....and I  saw my ONC yesterday.  He said to try Vitamin E for the leg cramps....if that didn't help, he said I could go off TAMOX for 3 months to see if the SE's improved.  I'm just scared to go off of it.........Hugs to all

Suzanne