Going off Tamoxifen for two weeks because of bone pain.

D4Hope

Saw my onc today. Been having some pain in my thigh area for a few months now. Onc thinks it's from the tamoxifen and is most likely a muscle aches. I feel a burning and general achiness all day long. If going off the tamox doesn't stop the pain time for a bone scan I guess. Anyone ever experience pain in bones with this drug?

D4Hope

Bump LOL

D4Hope

I hope someone comes around and answers my question... I don't bite LOL.

changes

Hi,

I had pain that felt like it was in my bones. Had a bone scan and all was fine. Oncologist blamed it on the Tamoxifen.

DiDel

try the Bottle O Tamoxifen thread...its a very active one

 Hope someone can answer, I have not had any issues on T

Diane

Makratz

I have had hip pain and general joint pain since on Tamox.  I am okay with it since I'm hoping the Tamox will stop a recurrence.  I wish the best for you!

jancie

Oh, I had excruciating hip pain to the point where I ended up having an MRI with contrast and without contrast, going to a hip specialist, etc. but nothing would show up on the scans but some inflammation.  I dealt with this for over 9 months.  I am now on Arimidex because it is supposed to be easier.  I do have to get a monthly shot in my stomach to keep me in menopause so that I could get on Arimidex and off the Tamoxifen.

I also found that once I put a special mattress topper on my bed - one of those temperpedic type - I slept much better and didn't have quite as much pain in my hip because it will cushion the pressure points when you are laying down. 

Finally after battling the pain for that long - I came to the conclusion that it was the tamoxifen causing the pain and not injuries from my horse.

suzanneinphoenix

I have a lot of leg pain, and my knees feel like they have aged about 20 years.....the worst for me has been the muscle spasms in my legs...only at night....and not every night.  My ONC put me on Ambien 5 mg.......and I also have Flexeril....just can't take that every night....took a Flexeril two nights in a row and could not function on day three!  The NP suggested I go off the Tamoxifen "for a few months!"....I didn't want to do that.  Somehow, I think the Flexeril just calmed everything down???  Not sure really, but I am doing better

jancie

Flexeril is for muscle spasms so that is why your legs calmed down on the medication.  It is a great muscle relaxer and sleep aid if you use it for that

D4Hope

Thanks everyone. I also get horrible charlie horses in my calves. Will ask my doc about Flexeril.

J9W

D4Hope,  I had horrible pain in my bones and so got off Tamox.....I stopped taking it late October 2010. Just a few weeks ago I mentioned to my husband how nice it was to walk up steps without wincing. I'm an exercise-aholic so not being able to walk/run was getting me down. I decided quality of life was worth more than that bone pain. So, the plan is every six months - mammo or MRI. UNFORTUNATELY, the pain is back; not nearly as bad nor does it last as long but when it arrives it catches my attention and my breath.  I'm going to believe it's just a lingering after affect of the Tamox.....but, two days ago my doc had xrays taken of my hips and femurs. I'll be shocked if anything more is found though. Take the break from the Tamox....or as some wise ladies did, maybe you could cut the dosage in half? Ask your doc about that.

D4Hope

Thanks J9W. I am going to ask about the dosage cut.

scrapmom40

Hi D4Hope - I have been on Tamox for almost 3 years (it will be 3 years in July).  I used to get charlie horses during the night in my calves, but they stopped after a few months or so.  Lately (the last few months), I have been having a lot of hip pain/discomfort.  I have not really experienced any joint pain at all since being on tamox until recently.  I have a new memory foam mattress and still have problems with my hips bothering me during the night and being uncomfortable.  Not sure if it is the tamoxifen causing the problems, but maybe it is.  I see my onc in July so maybe I will bring it up to her when I see her to see what she thinks. My guess is she will say it is not the tamoxifen, but we'll see.  I hope cutting the dose helps.  Good Luck!

jo1955

D4Hope - I had really bad pains in my toe joints and pains that would creep up my thighs.  My onc gave me Lyrica and it is a wonder drug.

3monstmama

How interesting!  I have been having some pain in one hip and totally wierd cramps in my big toe but hadn't crossed my mind that it might be linked to the tamoxifen.  Its not totaly misery but its uncomfortable when it happens.  I had been worried that the toe thing was gout as I worked with someone with gout.  Only thing is that its relatively brief and goes away without my doing anything which I know from my co-worker is NOT the case with gout.

Now if I can only remember to ask my oncologist when I see her next. . . .

Topcat57

The Tamoxifen has taken a toll on me both mentally & physically. The mental part started a few years ago, got on anti-depressants, but in the last few months my mental state has gotten worse. The doc had to up my dosage of Pristiq and now seeing a counselor to help me cope. I also take xanax and sleeping pills. I've talked to other bc survivors and they've had alot of the side effects I have, insomnia, depression, forgetfullness, panic attacks, uncontrollable shaking & fatigue.  I even got to the point that I was drinking too much to kill both the mental & physical pain.

As for the physical pain, I didn't understand it at first, so after about a year of constant pain in my right shoulder, neck, & hip pain I went to a chiropractor. Took some x-rays and he told me I had scoliosis (which I had forgotten I had),  I went to him for 4-5 months which helped, but I still hurt.  Said something to my oncologist about the pain and she told me that was one of the side effects of tamoxifen. I thought oh great, just one more thing this drug can do to you.  The pain isn't as severe as it used to be, but it's a constant reminder that it's there.  I usually take 1 Mobic (prescription drug) or 4 Motrin on occasion to help the pain.

 I hate being on it, but I would be worse off if I didn't take it worrying everyday, is the cancer coming back, more stress which I don't need.  So say your prayers everyday and remember one day you will no longer have to take it.  That's what keeps me going on my good days

GG27

I had terrible bone pain when I started with Tamox, but I went & had 3 treatments of acupuncture & it took care of it.  I think it aggravated some arthritis which showed up on my initial bone scan, but the one I just had 15 months later shows nothing.   I also take Vit D & calcium everyday &  I notice that if I don't have a banana every day I get terrible charley horses in my calves.  Good luck, I hope you find what will help you.

Mechell

hi there, probably too late to reply to this thread, but it all sounds too familiar, have been getting 'tics; in my legs and mainly the weight gain is why i have come to the conclusion that if women stop taking it for the reason of getting pregnant, then surely i can stop taking it to lose weight. According to the BMI, i am obese, which is not healthy thing to be, and the short period between the end of Radiotherapy and starting Tamoxifen i lost 4kilo, so i guess im looking for reassurance or someone who has stopped it for a time just to know you are out there,, even though as i said, realize they do it for pregnancy, so dont see the harm in 6wks off and bootcampin it for that period ,

any advice/comments welcome thanks. Mechell

coraleliz

I went off Tamox for 1 week & then started back on 10mg because of SEs(mostly dizziness & headaches). I'm back up to 20mg. My shoulder-arm-wrist-thumb ache. My guess is it's a nerve issue from surgery & RADs but I could be wrong. The thumb could be arthritis. Two old injuries are also haunting me. Planter Faciitis in one foot & a neuroma in the other. Since I've had them both in the past(just not at the same time or in several years), it's hard to say it's the Tamox.