Seeking advice from tamoxifen veterans

curlygirltoo

Hello, all!

I have a question for anyone who has been on tamoxifen and now is done with treatment. First, let me say that I know many people strongly dislike tam, and for many valid reasons. That is not the topic of this question, however, so I’d prefer to avoid a discussion of the evils of tam here. I have had a relatively easy time of it on tam and would not consider going off of it, given what I know about my own situation.

I have been on tam for 3 years now. For the first two years I blissfully had virtually no side effects. After 2 years, I started noticing that my joints were achy and easily injured. I went to many doctors and finally a rheumatologist told me that this is a symptom of tamoxifen (about 11% of women on tam get this symptom, according to this doc). For the past year, I have really struggled with this, as I’m a yoga teacher and an intermediate yoga practitioner. Every time I practiced, I would hurt myself. I’ve finally gotten to the point where I realize that I have to give up the practice that I’ve known and start over with very, very basic and gentle postures modified to prevent joint injury. This has deeply affected my sense of myself and I’m in actual mourning for my old practice and the freedom my body used to have.

So, here’s my question… Has anyone else out there had this same symptom and, if so, did it go away after you went off the tam? If it did go away, how long did it take?

Thanks for your help. I wish you all blessings.

Tux

Tamoxifen
Sorry that you are having so much joint pain! I have been on tamoxifen for 2 1/2 yrs.
Lots of joint pain(leg/toe cramps, also) for me, too. Before BC I was a half-marathon runner and I lifted weights regularly. So much for a healthy lifestyle preventing cancer, right?

My regular doc suggested glucosimine/chronroitin and tylenol for arthritis (1 capsule of each in the AM). That has helped greatly. I joined a "senior citizens" exercize
class to designed to increase flexibility; tai chi moves are also taught in this class.
It has helped tremendously!

It has been really hard to get used to this "new normal"--I have always been very
athletic--could count on placing in top 3 in my age group at races, could easily run 5 miles after work in the evening, etc. I just try to be thankful for each day. I hope
you can find some relief from your joint pain.

New Flower

Tux said:

Tamoxifen
Sorry that you are having so much joint pain! I have been on tamoxifen for 2 1/2 yrs.
Lots of joint pain(leg/toe cramps, also) for me, too. Before BC I was a half-marathon runner and I lifted weights regularly. So much for a healthy lifestyle preventing cancer, right?

My regular doc suggested glucosimine/chronroitin and tylenol for arthritis (1 capsule of each in the AM). That has helped greatly. I joined a "senior citizens" exercize
class to designed to increase flexibility; tai chi moves are also taught in this class.
It has helped tremendously!

It has been really hard to get used to this "new normal"--I have always been very
athletic--could count on placing in top 3 in my age group at races, could easily run 5 miles after work in the evening, etc. I just try to be thankful for each day. I hope
you can find some relief from your joint pain.

My joints are Very unstable
You are are not stable my physical therapist is teling me every time after she corrects me. She also tale me to do symmetrical excercises only, as it is much easy to displace joints when you are working on one the side.
I am consider myself a vetera of anti-estrogen therapy, being on different medication for 3 years. Out of three I took tamoxifen for 2. Before diagnosis i iwas in a very good shape. I think we are aging much faster under cancer surcumstances. It is sucks, however we are learning to enjoy life.

Clementine_P

Me too
I too suffer from the same side effects from Tamoxifen. I have been on it for 1.5 years and also would not consider stopping it. I am a very active person and the joint aches and pains have been a hindrance at times. For what it is worth, I have noticed with myself, that if I keep my weight down (I'm 5'4" and weigh about 112) that my achy joints are not nearly as bad. Same goes for limiting salt in my diet. If I let myself cheat too much on salt then my joints act up. When my joints get bad, I take an NSAID for a couple of days and that usually helps as well.

Good luck to you.

Clementine

Kat11

Clementine_P said:

Me too
I too suffer from the same side effects from Tamoxifen. I have been on it for 1.5 years and also would not consider stopping it. I am a very active person and the joint aches and pains have been a hindrance at times. For what it is worth, I have noticed with myself, that if I keep my weight down (I'm 5'4" and weigh about 112) that my achy joints are not nearly as bad. Same goes for limiting salt in my diet. If I let myself cheat too much on salt then my joints act up. When my joints get bad, I take an NSAID for a couple of days and that usually helps as well.

Good luck to you.

Clementine

Leg Pain
I have been on Tamoxifen just about 2 years now. The longer I am on the drug it seems the worse the leg pains get. My primary not my Onc keeps telling me its not the drug. I did have a knee injury, but now both knee's are hurting. I thought it was because I was babying one because of the other. Legs are so bad, don't know what to do any more. Will try anything. Have taken alot of NSAID to much, may have caused an ulcer will find that out on the 17th. I will not stop the drug, so gonna have to come up with something.
Kathy

Kat11

Clementine_P said:

Me too
I too suffer from the same side effects from Tamoxifen. I have been on it for 1.5 years and also would not consider stopping it. I am a very active person and the joint aches and pains have been a hindrance at times. For what it is worth, I have noticed with myself, that if I keep my weight down (I'm 5'4" and weigh about 112) that my achy joints are not nearly as bad. Same goes for limiting salt in my diet. If I let myself cheat too much on salt then my joints act up. When my joints get bad, I take an NSAID for a couple of days and that usually helps as well.

Good luck to you.

Clementine

Leg Pain
I have been on Tamoxifen just about 2 years now. The longer I am on the drug it seems the worse the leg pains get. My primary not my Onc keeps telling me its not the drug. I did have a knee injury, but now both knee's are hurting. I thought it was because I was babying one because of the other. Legs are so bad, don't know what to do any more. Will try anything. Have taken alot of NSAID to much, may have caused an ulcer will find that out on the 17th. I will not stop the drug, so gonna have to come up with something.
Kathy

disneyfan2008

I am starting on my 5th year
I am starting on my 5th year of tamoxfin..I had no issues or side effects until about 2 1/2 yrs (2 yr post meno) I started bleeding! Prior to that @ 6mths intenal ultrasound followed by D & C (that got old fast) So I decided to have complete hystectomy for VERY enlarged Uterus. THEY took me off it for few months-then back on-so far all ok..in 3 wks it will be ONE year since surgery!

As far as aches and pains..I have some but thought just my age (52 yrs) Have not slept through night in about 4 yrs...also age or meds?

NO hot flashes...happy to say.

Denise