Severe joint pain, Onc suspects tamoxifen

Mommyto6sweeties

hello all, I started tamoxifen in May, by July I overnight began having severe joint pain, in pairs of joints so badly if it's my knees or ankles I cannot walk unassisted. It's also affected my wrists and I am unable to lift or grasp. Primary care Dr. Was at a loss with me, prescribed vicodin and referred me to rheumatologist, saying it's likely rheumatoid arthritis or lupus. I can't get in until December. At my onc check up he noticed my sad state and said tamoxifen can cause this in very rare cases, gave me an rx for prednisone and took me off tamoxifen. It's been 10 days. I cannot seem to find anywhere information on how long it takes tamoxifen to leave the body. Been off for over 3 weeks. Vicodin does nothing for the pain and prednisone seems to help but tomorrow is my last dose. Any similar stories? Anyone have experience with quitting tamoxifen due to side effects and can tell me how long it took for your side effects to ease? I know everyone is different but would love to hear from anyone about this.

Thanks!

Missy

dacre

Hi Missy....haven't been on Tamoxifen...but am currently taking Armidex...the alternative. I started having severe joint/muscle pain during my chemo treatments...especially after having the Nuelasta shot. The pain has never gone away and after beginning the Armidex it has continued. Trust me...not as severe...but constant pain. I tried to stop taking the armidex...2 weeks...pain didn't go away and lo and behold a brand new breast tumor developed. ...it was probably already there anyway. I live in NY where we do have medical marijuana...which may sound crazy....but my pain is ongoing. So I'm consulting with a doctor about the possibility I'm also looking in to acupuncture as an alternative. I also have extreme pain in my wrist and thumb.....cannot hold things or try to open anything because I have no strength in either hand. I do not have arthritis...been checked. Probably not too helpful....except to know you're not the only one experiencing these side effects. May you have a Blessed Sunday and may the Sun always shine on you!!!

kcat2013

Hi Missy, I'm sorry you're in such pain. I have rheumatoid arthritis and honestly my first thought when I read your description of the type of pain you were having was that you had developed RA. Of course I'm no doctor but the significant pain, bilateral pain (so pairs of joints like you said) and the loss of gripping ability and extreme stiffness are how my RA presented originally. I'm glad your onc took you off the Tamoxifen in case that is the cause and not RA. I suggest calling the rheumatologist's office and ask to be put on their cancellation call list, so hopefully you can get in earlier than December. That's a long time to wait with your pain. Straight up pain killers like Vicodin don't help my pain a lot when the inflammation isn't well controlled. I do love prednisone though Unfortunately it's not something great to be on long term. Keep us posted on how you are feeling.

I also meant to add that I've been on Tamoxifen for 2.5 years and it doesn't cause me much additional joint pain, but I do have more joint stiffness since taking it.

Blownaway

Mommyto6 - Everything you describe is happening to me. My onco gave me a break from Tamo and after 2 months, the only "s/e's" that went away were my daily headaches and not being able to take a deep breath. At the same time, I started weanng myself off Effexor since I was only taking it for hot flashes. My pain gradually became worse as I titrated down very slowly the Effexor. I just started back on Tamo on Oct.7 and managed to get in to see a rheumatologist yesterday. He listened to me, had 7 vials of blood drawn and x-rayed my hands. He ruled out fibromyalgia fairly quickly. He said I might need to restart the Effexor since it does help relieve pain (I also take gabapentin for chemo induced poly neuropathy). He is waiting to get results before prescribing Cymbalta or Effexor. I just told him give me whatever is the "healthiest" that will not make me too doped up but will stop the pain. Anyhoo, I'm thinking we might start a new forum topic "chemo induced pain" or something like that. Will revert when the doc calls me re the results.

farmerlucy

I'm having the joint pain too. I'm two weeks off Tamoxifen and initially I thought it was improving but now I'm not sure.

The half life of tamoxifen is about two weeks, so it may take a month to get it out of your system.

All of this started after the ooph last year, so I guess it is menopause and aging.

Moving forward . . .

exercise_guru

Ladies yes start a thread about this in the pain section. Not sure whether to blame chemo, AI, Tamoxifen, mastectomy, hysterectomy as I have been through all of that.

Farmer lucy & others has given me a lot of support through the last 5 months as I have battled through all kinds of problems. I am sorry I can not offer much encouragement but When I went on AI it took around 6 weeks for the joint side effects and loss of hand strength to kick in. It also took being off of it around 3 months for the symptoms to improve at all. I am still experiencing damage in my hands so I am not sure. I too am hoping that these treatments did no trigger something else to go haywire in my body like RA

Anonymous

Mommyto6, I'm not on same med, but was just taken off mine due to joint/bone pain. Although all drugs are different, my MO told me it could take weeks to months for the SE's to clear up. He also said if they didn't clear up, he would send me to a Rheumatologist to see if something else is going on, so you are on the right track.

radgal

Papers such as these helped me understand the cause and treatments for joint pain with AIs and Tamoxifen:

http://bmjopen.bmj.com/content/4/6/e005285.full

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC28267...

http://annonc.oxfordjournals.org/content/early/201...

giotatsiliki

Διαβάζοντας το κείμενό σας, σκέφτηκα έγραψα. Υπάρχουν ολιστική μασάζ προσώπου και ειδική δίαιτα. Έρευνα. Με αγάπη από την Ελλάδα, Γιώτα

farmerlucy

I saw an orthodoc today and she feels like it is arthritis. She was completely clueless about any side effects from being estrogen deprived. I'm going to double the naproxen, and get a steroid shot in my right knee in a couple weeks. Oh and I took the little pill today - guess I'm too scared to stop. Forty-two months in. I'm going to insist on the BCI test at five years. I was telling DH tonight that I always thought I'd age gracefully. Um no. I'm gonna keep on whining - but only to you my wonderful sisters. Xox

FrannyM424

Hello Ladies! Checking in after a long break. Been on Tamoxifen for 2.5 years. Do have some joint pain especially hips at night but also low back, ankles, thumbs & wrists. Never knees which surprises me. I have found that the brand makes a HUGE difference for me. Was at my worst on Mylan brand but seem to do much better with Watson brand. My pharmacist also takes Tamoxifen & has less side effects with Watson brand. Might be something to consider. Good Luck!

Jackster51

Tamoxifin sucks!

Pipermac1

I was on another drug too start with and I got so depressed that I wanted to get rid of myself ,so the doctor put me on Tamoxifen ,I was on it for a few months and got up from the couch and could not walk with pain in my right knee ,so I kept on with the Tamoxifen , did not get any better ,I had no quality of life ,so took myself off of the pills .I am now getting free of pain and feeling more like myself. If you have to take them ,I would , but if no quality of life I would suggest you don't take them !