Arimidex Causes Lymphedema?

I was on Arimidex for maybe a year, when I got sudden acute lymphedema in my left arm. This was very disabling & painful.

The arm & wrist have remained swollen for months, & (at times) swell more.

After being on Arimidex for maybe 18 months, I was switched to Femara for maybe a month, then Aromasin for maybe five days. Then last week, I stopped taking these meds.

Today when I saw the nurse practitioner, her first comment was that my arm looked so much better & wasn't so swollen.

Since I've been off the estrogen-blockers, the swelling in my left arm has gone down & down. I'd thought it would remain hugely swollen forever. So this is a pleasant surprise.

Theories: The Arimidex might have finally irritated & inflamed my body to the point, where the lymph system could no longer function well, ...
which might have helped trigger/cause the lymphedema.

The best I can remember, the swelling didn't go down while I was on
Femara. And I wasn't on Aromasin for very long, because of the severe adverse reactions.

I was in very bad shape while taking the Arimidex, felt deathly ill & weak, was barely able to function or care for myself, developed extreme joint pain in new areas (which kept worsening), couldn't watch my diet or take supplements much, had no quality of life, etc. And I gained a lot of weight.

While these drugs might block estrogen, I can't see how their doing this much damage inside my body, ... can help me much with my fight against cancer.

It seems that the irritation & inflammation, which they seemed to cause in my body, must do some damage, esp. over time.

I'm hoping there will be some more research done, into whether these drugs can help much or not, ... & more research into why some women taking them, have recurrence of cancer anyway.

If the drug companies refuse to test me at all, to see why these drug reactions were so bad, ... then that will say something about the current quality & focus of medical/PHARMA care.

It's been my experience so far, that drug companies & doctors will ignore all bad results & all problems with their meds, ... until there's a class-action-type lawsuit, many years later.

Susan, Su_Texas my opinions

Hello Susan:

When I saw your post, I thought that I should respond. When I first noticed lymph edema, arimidex was the farthest thing from my mind. I did not have a mastectomy, nor did I have any surgery at all. One day, it seemed to simply appear out of no where. I have found no difference in my arm from the get go of arimidex. I have never felt better on arimidex and can only pray that I will never have to go back on chemo.
I was lucky however, in that I did not get ill from any of the chemos.

As far as medication for lymphodema, you might try the lymph edema center nearest your home, the bandaging did help, but your arm does go back after a while.

There's no data that suggest Arimidex causes lymphedema, Susan.

Coincidences happen. Not everything is a conspiracy.

There's no data that suggest Arimidex causes lymphedema, Susan.

Coincidences happen. Not everything is a conspiracy.

Although there's no medical evidence to support Susan's claim, she's certainly free to believe whatever she likes, I guess.

Some say lymphedema is caused by less-than-optimal surgical technique, some say it really can't be prevented. My wife's got a pretty good case of it and manages to function just fine.

Bea, Arimidex is the gold standard for antiestrogen treatment in post-menopausal women and it's generally pretty well tolerated. Susan says she's been through all three aromatase inhibitors and I don't think she cared for any of them

We're starting it on Friday after taking a day's break from Tamoxifen (the pharmacy is closed tomorrow). If I were to offer some unsolicited advice, I wouldn't use any one person's thoughts as gospel here. There are some really sharp cookies here, but none of us are doctors and all of us have opinions

Happy New Year!

(well, almost. we've got about half an hour.)

Adverse Reactions To Arimidex

My Information:

Blood: O positive

Countries of Origin (way back): English, Scottish, Irish

Recently (since about mid-1850s): East Texas, West Louisiana

Family History of Disease: None. Very healthy. No allergies to flora & fauna (not even to poison ivy). No food allergies.

Skin: Allergic to bandage tape.

My History: Severe Adverse Reactions to antidepressants, blood pressure meds, anti-inflammatory meds, muscle relaxers, pain meds, ... Arimidex,
Femara, Aromasin, etc.

I can take any antibiotics or sulfur drugs OK.

I did OK on chemotherapy & radiation.

LifeSpan: No matter what my relatives did (such as only eat candy & coffee, become severely overweight, get badly injured, smoked, etc.), many (most?) lived to be in their nineties.

Cause of Death:

Paternal grandfather died of strokes, many strokes over a period of years, late in life.

Paternal grandmother got very sick in her twenties (malaria?), managed to survive, but was never healthy or able to work hard again. She started having strokes in her seventies or eighties, or so. She had four children. She had the bogus surgeries & treatments of the day, such as surgically turning over one's uterus, to treat fatigue & fever from the lingering malaria symptoms/problems, etc. She survived them
OK, but they didn't help.

Father, died in his seventies of lung cancer, probably from his building ships during the war (WW2), probably asbestos. He wasn't sick with it (just drippy nose), & the docs thought he could live another 15 years or so (because the cancer was slow-growing), but he wanted to try chemotherapy, ... which quickly sickened & killed him. [So I was terrified going into chemotherapy, but did OK.]

Maternal great-grandfather, died from skin cancer, late in his life.
He'd been a farmer.

Maternal great-grandmother, died in nursing home in Louisiana (probably from neglect & starvation, I was told), when she was about 100 years old. Her nice daughter (Aunt Gladys-Sister) had died in her 50s or 60s from blood disease (?), or an undiagnosed illness & the resulting medical treatments for it, ... & that only left my grandmother (Mammy
Susie), who'd rather not help, or who was too cruel & greedy when she did help (taking her SS check, feeding her turnip greens & cornbread only, yelling at & threatening her). So Mama F. was put in a nursing home, but I wasn't told this until after she died.

Maternal grandfather, was gassed in the war, was in a hospital for a while (with pneumonia-like symptoms & such, which kept recurring later), & he was never very healthy again. I don't think he lived into his nineties, but he lived to be very old.

Maternal grandmother (Mammy Susie), took every risk imaginable, injured many times, ill many times, always survived. Fell/leaped out of moving vehicle in her twenties, trying to greedily grab candy being thrown to her children, ... was in coma in hospital for a while, ... finally woke up & got sent home. Got blood poisoning, & survived. Etc. Had four children. Probably because of vehicle accident, she started having strokes in her twenties, had many strokes over the years, ... stayed up & active (until almost ninety?), when the last stroke incapacitated her & put her in nursing home.

Some people do Not have a severe adverse reaction to Arimidex.
Hopefully, you'll be one of them.

What I'm trying to do is raise awareness, that in some people, this drug can be very bad, & might cause some serious health problems.

Plus, the doctors shouldn't be forcing those patients, who are having severe adverse reactions to a medicine, to keep taking it, ... with the threat that if they don't, they'll get no medical care.

The PHARMA companies should also do more testing, to see exactly why some people have bad reactions to their medicines. This could save a lot of pain, suffering, time, expense & grief.

The docs need to better know what they're doing, rather than keep forcing the same standard treatments on everyone.

I keep getting harmed by the docs' cr*p-care & determined-dumbness, by the many failures of the medical system, ... & I don't deserve this.

I've done everything correctly, over & over, only to have the medical system keep failing. For me, this has repeatedly proved a nightmare.

The medical system needs to get much better. We need consumer groups rating each medical treatment, each doctor, each hospital, etc.

Right now, there seem to be no quality controls, & no way to legally sue or change the bad docs.

Susan, Su_Texas my opinions

<< I was on Arimidex for maybe a year, when I got sudden acute lymphedema in my left arm. This was very disabling &amp; painful.

Su, you were on the Arimidex for a year before you got the lymphedema. There are a multitude of possible events which may have caused it. Scar tissue to the area which can develop gradually over time may cause it. You could have overused it or slept the wrong way. You could have had a minor infection somewhere or even a viral illness which may have caused it. Even an increase in cancer cells can be responsible for it. Do you remember Mazza? That was how her cancer was discovered--she developed lymphedema and had never had any surgery at all to the area.
Of course if the lymphedema cleared up on its own after discontinuing hormal treatment and stays that way over time, then there may be some relationship between lymphedema and the medication in your case.

Susan, I'm sure you just want to be helpful but your post can be very frightening to someone like myself who may have no choice soon but to go on the Arimidex. I already have a fear of Lymphedema and your post had me ready to say "no way" to the Arimidex. However, I made myself go back and reread the posts of others on here who state they are on or have used the Arimidex and do not have your intense problems with it.

I have no idea how it will affect my system but what are we to do? No matter what drug they try on me, I still may have bad effects but the idea is to try to survive as you well know from your own experiences.

Oh well...maybe we can change the title of this group to "alt. scarum.
bc".<g

"A Happy and Healthy New Year to All! "

Every year is a gift! I started Arimidex right after I stopped my high chemo. They told me I could change but I am very happy on Arimidex! I got lymphedema from the dr checking my lymph nodes from cancer. I also have lymphedema in my legs cause I have had colon and other cancer. I am learning alot about lymphedema from running a line here called New Beginning. I never heard of lymphedema til after cancer surgery. Good luck! Debbie

Post edited by: footprintsangel, at: 2008/06/08 20:01