arimidex side effects

[rayanna]

hi,ive read through most of these posts,im writing on behalf of my mum,she had 1st masectomy over 13 years ago,didnt need chemo or radiopherapy,was put on tamoxyfen,felt ill after a few weeks,kept telling doctors,no-one would listen,then after a year,developed a skin condition called lichen planus,her skin was peeling of on her hands feet,vulva,head,her feet had two holes full of puss,had many stays in hospital over next few months,finally her dermatologist admitted it was the tamoxyfen,she was taken off it,but wasnt offered a replacement.
after just over 11 years,her mammiogram showed cancer in her other breast,unrelated to 1st cancer,she chose a masectomy again,which surgeon made a right mess of,but was told she needed no other treatment,after about 18 months found she got mets to her bones and vulva(ment to be quite rare)had radiotherapy,put on femmara,got severe side effects,then tried faslodex,still very bad on that,so was put on arrimidex,kept on it for about 6 months,but became immobolised by the pain,so came of it,but the cancer spread more within those 3 months,so had more radiotherapy,and been back on arrimidex for last 4 months,but her quality of life was zero,totally crippled with pain and in a wheelchair,cant consentrate,lethargic,nausea,v ery depressed,we saw her onc last week,who is excellent,and shes stopped the arrimidex,that would of killed my mum before the cancer,and her onc agreed,my mum is over the moon,although she doesnt want more cancer,she cant live how she is,she has no life at all,
sorry for the long post,
goodluck to you all,
great if you have limmited side effects,but it has to be a personal descision about staying on it,in my mind its poison,
best wishes,rayanna.xxxx

[carolyn in Virginia]

Rayanna, You are a very dear daughter...whose caring, love and protective attitude shines into all our lives who read and/or post here I lost my baby girl 5 years ago and your posting makes me think about how perhaps she would be helping me to cope as you are with your Mum. Tell your Mum even though she suffers greatly with her health issues, she is very fortunate to have you on her side. I know my daughter is helping me to keep nagging the doctors and to keep asking questions and search for information. Thank you all for sharing and we all can know we are not alone.

[Ruth]

I must add that, I, too, am so grateful for the sharing by so many who are going through such similar experiences. I thought I was over-reacting when I had to tell my oncologist that I had taken myself off the Arimidex because I thought I would end up in a wheelchair.
However, I do so much appreciate the medical community for working so diligently to try to provide ways for us to fight cancer! Doctors do not have easy lives - especially those who work with cancer patients.

[Liz]

I read in the paper today that the US authorities recommend twice the levels of Vit D3. I am prescribed 450IU a day in the UK.I wonder if anybody can tell me how much they are taking.

[carolyn in Virginia]

I just had my rx for vitamin D filled this afternoon. I take one pill once a week and the amount is 50,000 (something or other). Don't have the bottle right here.

[Liz]

Thanks Carolyn.Sounds as if you are taking far more than me.

[Jenny]

I have been off the Arimidex for 1 days now and my hands still hurt quite a bit. Has anyone had this problem and can you tel me how long it takes for the pain to stop?

Also, the Vitamin D -- I, too, am on 50,000 units of Vit. D (ergocalciferol) once a week.

Jenny

[Liz]

Thank you for the info. I'm actually taking Vitamin D3 Colecalciferol. I've just looked up ergocalciferol and apparently that is Vitamin D2.I wonder why we're being prescribed different vitamins for what seems to be a comparable problem.

[Marilyn]

Jenny, I have been off Arimidex for over four months after two years on the pill. My right hand with
trigger finger still hurts. I have been going to physical therapy for trigger finger and for pain and weakness in legs twice a week since Oct. 20. All is so much
improved. I began with Femara a week ago and have begun having some different aches and terrible bloating and gas. Hope I can tolerate Femara, as I had to stop taking Arimidex because I couldn't walk--along with so many other problems.

[carrolljung]

After four months on Arimidex, my hips, feet and legs were causing me so much discomfort, I couldn't sleep - also the hot flashes and night sweats were disruptive day and night. My doctor took me off everything for one month - during which time practically all of my symptoms disappeared. I then started on Femara, and have very little bone pain....I have a hot flash now and then - and do continue to have the night sweats - but not nearly as intense as on the Arimidex. We're all so different, even on the same drugs!

[Jenny]

Marilyn wrote:

Jenny, I have been off Arimidex for over four months after two years on the pill. My right hand with
trigger finger still hurts...

Thanks Marilyn, and Carol, too. I have been off Arimidex for 10 days now, maybe that is too soon to see an improvement. I decided to NOT go on Tamoxifen. With a history of a blood clot, I just know if I go on it, I will worry every time I get a leg ache or a chest pain. I don't think I can live like that.

My Tailor-X DNA test showed a low risk of another tumor, so I think I am going to take my chances. But I a still going to be a worry wart, I just know it!

[carolyn in Virginia]

I was not told about a Tailor-X DNA test or similar tests that would indicate "risks" for another tumor. One more thing to ask the doctor about and to google for info.

[Jenny]

carolyn in Virginia wrote:

I was not told about a Tailor-X DNA test or similar tests that would indicate "risks" for another tumor. One more thing to ask the doctor about and to google for info.

Here is the web site. I was asked to be in the study and by doing so, the DNA test was free. They need to use your tumor for the test.

http://www.cancer.gov/clinicaltrials/digestpa...

Jenny

[Mary]

I have been on Arimidex for about 1-1/2 year and have the same side effects that others have described; hair loss, weight gain,dry skin, terrible night sweats, bone and joint pain, especially in my hands, knees and hips, shortness of breath, etc. My doctor prescribed Effexor for the night sweats, which has helped. I have also found that swimming has helped with the joint pain but am still debating whether to continue with Arimidex. I feel like I have aged 10 years in the last two years and am getting very depressed about the effects the Arimidex is having on my body.

[Barb]

I have been on Effexor for depression for quite a few years and the only symptom of the Arimidex I did not have was the night sweats.

I took myself off Arimidex two years ago because of the side effects. It took a long, long time for the side effects to disappear but they are finally gone, leaving some residual pains kind of like arthritis.

I do advise people who ask me about Arimidex to read this web site carefully and to think long and hard about ever taking this drug from hell!

[Liz]

Barb
How long exactly did it take for your symptoms to go?Istopped taking Arimidex 16 months ago and my hot flushes are worse now than they were then. Also I have osteoarthritis of my hands and feet.I was on arimidex for three years I wonder if this has any bearing on the time it takes to get out of the system.

[carolyn in Virginia]

Happy Thanksgiving to All!...I now have a diagnosis of Fibromyalgia...my joint and muscle pain and arthritis...degenerating nerve probs in feet/toes...whatever else goes with that diagnosis. The fatigue and all the rest is tied in and first came to me with Arimidex and maybe even radiation therapy which poisons cells as well. But I digress...my point is that perhaps these Arimidex symptoms morph into full blown other diagnoses such as fibromyalgia...that is just an example. I'm sure there are other debilitating manifestations of Arimidex that have other diagnostic labels. I do go to physical therapy and it helps...but some days unfortunately, the symptoms have returned with full force.

[Barb]

Liz, I took Arimidex for four years and was supposed it take it for another year but I absolutely could not take anymore. When I quit, it took a good two-three years before I could honestly say I didn't hurt anymore.

The thing that really got me that all the doctors I talked to treated me as if I was the only person in the world to have all these symptoms. Now I find out that they all know what it does to a body and still they treated me as if I were a hypochondriac and just looking for attention.

[Liz]

Barbara, Thank you ,at least I feel that there is hope that there will be some improvement.I suspect that the doctors try to ignore it because they don't have the answers.

[nana56]

To all you ladies with the joint pain & etc. I went thru the same thing for 5 years being on Arimidex ....I took my last pill Oct.2009
The only way I got thru my 5 years was taking Glucosamine, Chondroitin in a liquid form for your joints ....you can get it at Walmart and some drug stores ...You take 2 Tablespoons a day.
Do not get the Tablets .... the liquid works better .Hope this helps !