Tamoxifen symptoms and conditions

I was diagnosed with ILC August 2007. I had bilateral mastectomy w/ reconstruction, chemo and started Tamoxifen. Then I had a hysterectomy and I started Aromasin about six months ago. Prior to starting Aromasin I had some muscle and joint pain from Tamoxifen but I could tolerate most days. Three months into Aromasin, I couldn't get out of my car. It literally took me 15 minutes one day and I had to trade cars with my daughter. Naproxen gave me upset stomach, ibuprofen wasn't enough, Tylenol wasn't enough, Hydrocodone kinda helped but makes you feel weird. My doctor decided to take me off of it and i haven't taken anything since. My side effects were: extreme stiffness, better with motion but joint pain was so bad i didn't want to move. I have been documented as having overall generalized weakness as a result. My doctor said Aromasin shouldn't make me feel this way but why is it doing this to everyone else (mostly) too? I am now being evaluated by a rheumatologist for arthritis. My joints still hurt so bad. I gained weight, cant concentrate, can't sleep, can't wear my shoes. my ankles hurt the worst after being on my feet. My ankles, knee joints, hip joints, neck, elbows, wrists, fingers, toes and jaw are all very painful now.
If i would have known all of this, i never would have had my hysterectomy and stayed on Tamoxifen. I can only hope at some point this will get better. I just pray the cancer doesn't come back in the meantime.

i have been on aromasin for one year after 2 years of tamoxifen.. the main problem I have is severe pain in both wrists. it started in the right wrist and now has moved to both wrists. my fingers are very stiff in the mornings as are my feet and ankles, as the day goes on i feel better but by the evening the pain is back, I have tried naprosyn but no relief. any thoughts

I have been on Warfarin since the end of Aug. 2007 when I had my mitral valve replaced with a mechanical valve. I will be on it for the rest of my life. My doctor.'s all assured me there were no side effects other than the bleeding risks. I now know this is not true. The side effects I am dealing with make me sometimes wish I had chosen a tissue (pig) valve, even though I would be guaranteed another heart surgery within ten years. I am 39 years old and a mother of two young kids. Since being on Warfarin I have experienced various body aches that come on suddenly but don't stay long; extreme hot and cold; itchy hands and feet; dry hair and hair loss; seeing "spots" usually followed by a headache; very thirsty; ongoing bowel troubles, possibly developed colitis; but the worst side effect for me is the fatigue and depression. I feel like I traded in my old self for my mechanical valve. Like I said, I'd have to have a tissue valve replaced eventually, and as bad as heart surgery is, I'd rather have 10 happy years w/out Warfarin than this struggle I deal with almost everyday. My brother is a surgeon and even he buys into the "no side effects" b.s. I work out as much as I can, which used to make me feel great, now I feel like it helps me get by but not the positive effect it used to have on me mentally.

I would like to stop taking paxil, I have been on it for 3 yrs. When I skip my medicine I get what feels like electrical shocks in my neck & head. I wasnt sure if I had a pinched nerve at 1st but began to associate this with the event that I had not taken my meds. I also have onset of panic attacks & rapid heart, & terrible terrible forgetfulness, as to even what cabinet I would like to open, I open the wrong one, go into the wrong doorway, wrong driveway. I am very concerned. I have told my Dr. that I would like to get off this Paxil but Ive been told that it would be best since I was suffering from anxiety attacks in past. I would like to be committed to be able to handle the withdrawls. If anyone has been successful in stopping Paxil and now feels pretty back to normal, please let me know. Thanks

My Aunt is 61 and had a one sided Mastectomy in January of this year. She had been suffering for about 8 years with the menopause (she took HRT for 18 months a few years back). She was told her cancer was hormonal and once she had the tumour removed (behind her milk gland) she was advised that she didn't need any chemo or radiation. She had 6 lymph nodes taken and all were clear. She was originally put on Tamoxifen for 4 months and then switched to Arimidex. She has suffered with hot flushes and extreme coldness (she had this beforehand) but has increasingly suffered with very painful indigestion/heartburn/acid reflux or possibly IBS. She has tried all the over counter indigestion medications to no effect. Is this normal? I am trying to get her to go to the DR about it - but she is very apprehensive. Is there another drug she could try other than Arimidex and Tamoxifen? Are these stomach problems normal? I would also say she seems to suffer with depression and tiredness. She doesn't sleep well because of the hot sweats etc. She also bloats out quite a bit and is still numb from where they took the lymph nodes under her arm. She also says her scar gets sore. Her mastectomy was Jan 3, 2007. She obviously didn't have reconstruction and doesn't intend to.

Is there anything I can get for her to make life easier? I am at a bit of a loss as to how to help her. Any thoughts would be very much appreciated.

I was on Aromasin for fifteen days and developed dry eye syndrome. I could cope with this if it was confined to having a gritty feeling in the eyes, but I also have bad visual distortions and have gone from having 20/20 vision to not being able to drive. I saw an opthalmologist immediately who recommended eye drops, flax seed oil pills, warm compresses, etc.. I had been using all but the flax seed oil prior to his diagnosis, and so far have only had a little improvement in visual acuity (after not taking Aromasin for two weeks). I was on Tamoxifen for almost ten months, and then Femara for one month. I had severe musculoskeletal pain with the Femara and took a med. break of almost two weeks before trying the Aromasin. Thanks for listening--Dorothy

I have had a noticable increase of dryness of my skin and vaginal dryness to the point of pain during intercourse. I also seem to run a little hotter, feeling the heat greatly. I am small, so that is not the reason the heat is getting to me.

My muscles also ache and I am now taking Taurine (from the health food store) and that seems to be helping. My blood pressure also seems to be going up. No hair loss, no weight gain. Guess there is something good here.

Question for All: I Worry that my cardiovascular system may be affected by this continued blockage of estrogen in my body. The heart is a muscle, therefore how do the muscle aches, my increased blood pressure and the health of my heart implicate femara and is it doing more harm to my body than the femara is helping me stop any cancer. I Was on Tamoxifen for almost 5 years. Now have been on Femara since Mar. 06

I have a friend who was on Prednisone (80mg.) for a severe skin allergy and weaned herself off of it because of a severe headache. While she is now off of the drug X 3 weeks, she is still experiencing the headache and nothing relieves it. She is discouraged. She was on Tamoxifen prior to taking the prednisone. Any encouraging words?

I have had significant hair loss since beginning Femara last April -- probably at least a third of my hair on the top of my head. Also, other body hair has diminished dramatically. It thinned somewhat with five years of Tamoxifen, but that ended three years ago, so that is no longer the problem. I understand from my search that 5 percent of Femara users have the bad luck to have this side effect. The question I have now, since I stopped using it, is the hair loss reversible??

My onocologist prescribed Bellaspas for hot flashes due to side effects of Tamoxifen - it has helped somewhat in the first 3 days. Only side effect - somewhat loose stools

It is nearly 2 years since having a bilateral mastectomy with affected axillary lymph nodes removed on both sides. This was followed by AC and CMF chemo and radiotherapy, all completed a year ago.
I was put on Tamoxifen but after a while I had side effects such as aching of muscles and joints. I was then put on Arimidex, but by April, I could no longer function through loss of sleep caused by the aches etc. I came off it for 3 months to go on overseas.
I resumed taking Arimidex and now after 3 months, I began to take them every other day to see if the symptoms would lessen. They didn't in any way, and now I have decided not to take anymore until I see the specialist in January for my check up.

I am unable to take anything stronger than paracetamol and then in moderation as it brings on IBS which is not any fun either!
Barb
4daisy@tpg.com.au