5 year Arimidex Club!

Hi Girls

I just wondered if the girls who have been on Arimidex for 5 years and over are starting to feel any different? I have tolerated this little wonder drug quite well and it really hasnt been any hardship, but over the past few weeks my joints, legs, ankles all ache, and I am very stiff before I start walking in a morning.

I had my ovaries out so that I would be eligible for the drug and havent had my periods for 6 years now, but also, I am feeling a little sickly.

Has anyone else got anything to share as I suppose we are on new territory with the 5 year mark?

Many thanks
Debbie xx

Hiya debbie,
I just caught your post, my next 6 month visit to Onc. tomorrow, secondary BC lungs dg 2008 and I am thinking " Is it me or what?"
Yes joints, sort of burning/aching, morning worst. Toenails and fingernails flaking and now skin is v. thin/ dry and I’m only 3 years on treatment. I had nausea with tamoxifen 18 years ago and now have same in the morning with arimidex… you have done so well after 5 years. I do feel am between rock and hard place and trying to stick my body together/oil the joints for the next two years doesn’t thrill me. Sorry to moan but do think 5 years is good… and yes it is a clever drug, but am fed up popping pills!
Hazelnut

Hi Hazelnut

Just seen your reply, hope the visit to the Onc was ok? yes you are right it is like a burning aching feeling, I also find that when I lift heavy things (like in the garden) I do feel it very much so the next day. I like you keep popping these meds but get sick of feeling not up to scratch, I just wonder what its doing to our bodies, but, we cant manage without them! We are between a rock and a hard place xx Just seen a posting that mentions they are doing now 10 year trials on these drugs, ever felt like a guinea pig? xxx

Hi,ladies
I am just coming up to my 1 year post op and Im on Arimadex. I had a lumpectomy and nodes removed.
At first,I had no problems at all but over,say,the last 4-5 months,my joints have been killing me.My fingers,wrists,hips and knees are swollen and so sore.
I have actually been waking myself up swearing at the pain!!:slight_smile:
First thing in the morning is worst but it eases with pain killers and a little time.
Im also experiencing nausea and sleeplessness.
Is this more or less ‘normal’ for Arimadex?
I have my first check up in July,which will be 12 months since I finished rads.
Thanks,ladies,
Egwene,Liverpool

Hi All

I finished taking Arimidex in January after 5+ years and the SEs still haven’t cleared up. I wonder if anyone else is in this position. I’ve still got fatigue, stiff joints, painful hands, hot flushes etc. but the thing that is really bugging me is that I’m now gaining weight at an alarming rate.

I had heard that Arimidex can cause loss of appetite, but I was eating normally whilst on it. Now I’m eating like a horse and don’t seem to be able to stop.

Grateful if anyone has any experience/advice on this.
Allthe best, Ro

My god just started Arimidex a month ago and from my knees down it is torture. Feel 100 when geetting up in the morning. Thought it might still be Se from chemo but never had the knees and legs so sore. Hate to think this will go on for 5 years.

Hi

My mum was diagnosed with BC last year, didn’t want op and decided to undergo hormone therapy treatment instead. At 78 she decided she’d seen enough of hospitals, however, I think she’s seen a lot more since.

Interesting to read the comments. My mum started off on Letrazole, for the first couple of months she seemed fine, then she got stiffness in ankles and wrists, then the neurosis started. By Xmas she was a little paranoid about anything and lived with the stiffness and throbbing in the ankles and wrists. However, she started falling backwards, especially going up the stairs but didn’t tell me this until she fell backwards off the first stair at my house where she was staying in April, fell and broke her left hip, I couldn’t get to her in time, it was dreadful. Apparently another side effect is osteoporosis - something she has never had until she was diagnosed with this on having her hip replaced. The local hospital, paramedics have been wonderful. She felt really guilty when they gave her a new hip but as she was so active, gardening all day long, they didn’t want to stop her. However, the panic attacks have also kicked in, these have been happening since Xmas but she didn’t want to tell me. She had some very bad attacks when she came out of hospital and came to stay with me, one night I sat with her all night as she was terrified she was going to fall out of bed and break her new hip - it was a dreadful experience. After another week she stopped taking the tablets.

So something that was meant to stave off cancer, brought on osteoporosis, panic attacks, vertigo and then a broken hip.

When she gave up the tablets I had my mum back, she was really good on the hip and after six weeks insisted on going home, even drove her automatic car. However, she went back to doctor and he prescribed anastrozole which I believe is another name for Arimidex from googling it. My mum came back to stay with me last weekend for a couple of weeks. Her ankles are so sore, burning with pain (yet bloodwarm to the touch) that she can’t walk, like one lady on this forum, it takes her a good five minutes just to stand up. Her anxiety levels have risen too and instead of enjoying her new hip I am watching my mum rapidly declining in health. Not able to move around and in dreadful pain - painkillers don’t help - she has aged beyond her years and is now getting very depressed - so am I.

We read the side effects of these tablets, but what is the point of prescribing them if their side effects bring about a worse situation not just for the patient but for everyone involved in her care. Are these tablets fully monitored? Do the manufacturers actually take note of the side effects? Is there anything that can be done to counteract the side effects?

Today, the tablets were stopped. My mother cannot live with the pain.

Oh and by the way, Letrazole is very difficult to get hold of, my mother had a repeat prescription but everytime she went to collect it at Boots, they told her they had nothing in stock and made a 78 year old woman hike around the local chemists and then she had to get in her car and drive 9 miles to get some!!

Is it worth it? has anyone had same symptoms but tried another source which has eased them?

Would like to read your comments please.