Arimidex

Hi Leslie and brenda1963,

I have been so depressed today because I feel the same way as both of you when I get up for sitting my joints in my knees and ankles just hurt I also feel like an 90 year old and I am only 47.  Also when I get up in the morning my joints in my thumbs snap until I keep bending my thumbs back and forth.  I notice feeling nauseated about an hour after taking my meds either one of you get that and do you guys take your meds in the morning or at night.

Hang in there ladies we can get through this and I am hoping without to many more SE....

Lots of hugs to both of you.

Pam 

Hi Leslie, I was placed on Aromasin, and tried to keep taking it for three months, till I could stand it no more. I continually became more 'crippled' up, moving as you say you do. I gained 12 pounds in those three months, and my blood sugar started going way up. I went back to my oncologist, and she put me on Tamoxifen. She wanted me to try Arimidex or Femara, but I know they cause similar, if not the same symptoms or side effects. I was sleepy all the time, and all I wanted to do was eat. The pain in the joints was really very bad. Since being off of the Aromasin, I started the Tamoxifen a month or so later, and so far, have been feeling much better. I know the Aromatase Inhibitors are supposed to get rid of all estrogen in the body, but I stopped taking estrogen (after being on it almost 18 years) and then immediately had the double mastectomy. I felt I really did the best as far as decisions go, with doing the double mast., so I rather try the Tamoxifen for a while. 

I need to lose about 30 pounds at least, and I have a treadmill, and I just was in the room on it for a 15 minute period. I felt much better after being on that.

Have you had a Dexa Scan to check for Osteopenia? My oncologist sent me for that, and also wanted me to see my cardiologist, as there is a chance these drugs can affect the heart. I just had an echocardiogram the other day, and it was the same as a year ago, so at least it appears that the Aromasin didn't damage my heart for the 3 months I was on it.

Take care! Hope you feel better! Talk to your oncologist. She told me I should have told her I was feeling so badly, but when she first placed me on the Aromasin, she said there were NO SIDE EFFECTS except maybe a little fatigue. Sheesh!

 

I have been on Arimidex, 2.5 yrs, and Aromasin for 7 months, both made me feel 100 yrs old.  Last week, my legs had me howling with cramps in the middle of the night. No matter which way I moved, another cramp hit me.  The next day I could barely walk for the ache in my shins and knotted calf muscles.  I decided to take some magnesium tabs and within three days all those symptoms had disappeared.

Still taking one a day, hoping that they keep working.

Sheila.

Like ElenaMarie, my onc put me on Aromasin after active tx.  The first 3 months flew by, the next 3 I started noticing aches and pains, and the last 3 months were hell.  In addition to the pain in my feet and hands I was having headaches every day.  My QOL was in the tank and I when back on short term disability.  My onc switched me over to Tamoxifen and my life has improved tremendously these last 4 months.  If all goes well, I will do 2 years of Tamox and then start an AI.  At that time I will be willing to try Femara, Arimidex or Aromasin to find the best one for me.  I just hope that by the end of two years my body will have adjusted to my estrogen-free existence and that the SEs won't be as bad.

My 83 year old mother takes Femara and she has been much better than me.  Of course she didn't go through chemo, but considering the 30 year age difference it's been hard watching her put more energy into the day than I have been able to.  So I'm hoping that I get back on track and that Femara will work just as well for me as it does for my mom.

Hi Leslie,

Well, it took me a good month when I stopped the Aromasin to feel a little better. Now, I have no where the pain like I did then. I have been on Tamoxifen for forty days now.

I need to lose at least 20 to 30 pounds. These medicines, are a catch 22, or like we get stuck between a rock and a hard place. I have dropped a few pounds since going off of the Aromasin. I wanted to eat all the time and it was just awful. But, everyone is different, and some women on here have had little or no trouble on these medicines.

Leslie, do you have many allergies? Or do you have arthritis already? I think sometimes, the ones that do, are more likely to have trouble with these drugs.

Oh well.... we just try to do the best we can. I have to go get a bath and wash my hair, and I used to look forward to that, and now I dread getting a bath, trying to get into the tub and get out, is a pain, but becoming less so, since off of the Aromasin. Phew! I hate showers, unfortunately.

When I vacuum, I have to get down on the floor on my knees, and put a small pillow under my right knee, it hurts so bad. Well, at least we are still here to commiserate about the ups and downs of this whole journey. Take care! 

Hi Becky,

I've been on Arimidex since late April and the only side effect is sore joints.  It really only bothers me when I get up from sitting a long time.  I can work it out quickly.  My hands and feet get stiff and sore at times too but excersie helps with that too.  I have not gained any weight and I can sleep well at night.  Hope you find the answers you're looking for on here.

Take care,

Nancy

Hi Elena,

Thanks for your reply. Your SE's seem typical of all those I've read about and frankly I cannot have any of them in my life and function properly; the stress of this illness in the early months of it, ie the last 6 months, is such that I cannot live my life properly at all. Anything that makes the current situation worse cannot be entertained! Only guaranteed and imminent death, unless I concur, can be considered!

I am in the 3rd year of a science degree at Bristol and already the stress of my current situation has rendered me useless, I cannot concentrate for long enough to read these complex papers that form the backbone of my course and coping with everything else is making me severely depressed. Tell my doctor? Why? What will they do? Can't see how Seratonin will help and there isn't much else on offer!

No. I have to manage what IS in my life: I have cancer. I have a son. I am a student. I have study to do. I have a job. I am Santa. I am pretty much on the verge of divorce but this worries me less than the all the above.

I can't see how taking Arimidex is going to help me at all; I've already put on weight through eating and drinking too much, so don't need to put on any more. Already I can't sleep, thanks to the menopause, additional insomnia not needed; my bones ache already, I've had carpel tunnel syndrome - don't want it again, and yet have to consider the 'benefits' of Arimidex! My chances of recurrence are hard to fathom because they make it so! So I don't really know but don't think it's that likely, really. Not with an OncoDX score of 8. Node negative. None the wiser really, if truth be told.

I want to live. I've got to get rid of all the negativity and bloody well get on with it, but it is hard.

I am going to ask my doctor to refer me to a nutritionist to make sure my oestrogen levels aren't elevated by  simply eating the wrong foods, and to give me something positive to focus on. Give me something to DO.

Arimidex would give me a 40% advantage if I were in the highly at risk group of recurrence; this translates into helping 1.29 women out of 100. My chance of being in this group is 6% . Why doesn't the maths help me? I have no idea. I have cancer and cancer = fear.

I know I am raving like a woman simply on the edge and admit I am depressed but reading your stories and comments does help.

Thank you to anyone who attempts to help me.

Becky 

Leslie~~~ I have been on arimidex since 3/2009. Initially I had horrible joint pain, trigger thumb issues and wondered how I would make it! My onc suggested Glucosamine but I didn't feel that helped. I got a foam topper for my mattress (just at Kohls, not a real $$ one) and that has helped me sleep. I really feel I have adjusted and don't have nearly the issues I had early on. The cold weather doesn't help and as we are both in MN that is a problem!! I had a recent Gyn appt and my MD said congratulations on maintaining my weight since last year....I said that only means I still haven't lost the 10 lbs I was trying to lose last year! I would speak to your Oncbecause I know mine said there are other options if I didn't tolerate the arimidex. Good luck!

Ladies, I take Femara which is similar to Arimidex. I had the bad joint pain for the first month or so but it has abated to the extent that I now only have a little finger stiffness.



Vitamin D and Omega 3 are recommended for joint pain and I believe they have helped me. I take 1000 units of D3 and 4000 omega 3 daily.



It is possible that symptoms settle down in some people, according to my onc. I have been one of those not now suffering.



If problems persist, ask about Femara, which my onc said is very similar. There is a thread on that too. I take the name brand. Some ladies say the generic has more side effects. You could have problems getting the original as I believe it's more expensive. More info on the thread.



Good luck.

Hi everyone- well these remarks are certainly a bit discouraging. I have been on the generic for Aremidex for 6 weeks now but I am only taking 1/4 tab 2 times a week. I started slow to let my body adjust and see how it affected me since I had a horrific experience with Tamoxifen 2 1/2 years ago.

I have had 2 local recurrences so feel I need to be on something.

The first 3 weeks I cried and was angry beyond anything that I have experienced before. That seems to have subsided a bit thank God. I tried going up to 3 x a week and started haveing suicidal thoughts- back down to 2x a week.

I did a little research and read that the half life ( how long it stays in your body( is 3-4 days). This makes me wonder why they suggest a strong dose every day.

My wellness doctor says that she has men with man boobs that take 1/4 pill 2x a week and the boobs disappear. She tells me that there has been no real research to see if a lessor dose is just as effective. I can feel that my estrogen is down as I hot flash frequently. Also my last blood test showed that my estrodiol is less than 25 but did not give an exact number. I have the ache joints and a bit of a pressured feeling between my ears at times.

 I do work out each morning and use Exercise tv on the Internet to choose a free workout video by expert trainers. I am sure this helps as I feel better on the days that I do it. + I like my new flat belly.( I called it my estrogen nest before I whittled it away) 

I am hoping my body can at least adjust to this small dose. It helps my paranoia to know that I am at least doing something.

Hey, Leslie, talk about getting 'out of the tub', it was almost comical when I was trying to get 'in' the tub. One night, my hand slipped on the side as I was trying to lower myself in, and I flew in like a big fish, and displaced quite a bit of water! I was just fortunate that I didn't konk my head on the back of the tub, but from then on, I was really careful. Since being on the Tamoxifen, though, I have lost a few pounds and had less difficulty getting into and out of the tub. 

To Merilee, for achey bones, I was mostly using Tylenol and also I take calcium and Vitamin D every day. I cut way back, though, on the Tylenol, due to possible liver damage that I did not want to get.  And you are right about the amount of info, it is very daunting to get through, that's for sure!

I have the same concerns as you do. I am terrified to take Arimidex. My ONC is pushing it. She wants me to at least try it. I will do that, but I am not sure that the lack of a good QOL is worth it.  All the things I enjoy like tennis and golf will be hindered or non existent. I have been a pretty active 63 year old, soon to be 64, and always felt 15 years younger. I don't relish feeling like an old lady. My Mom is 88 and still golfs and has an active life. I want to follow in her footsteps as I think her high level of activity has improved her QOL and kept her healthy. I am not sure if taking this drug is for me. I really wish I could read something positive on this drug. I also worry that ten years from now they will take it off the market like they did with vioxx, another wonder  drug.

Hi Carol.....my guess is you will be just fine.  I do everything I did before Arimidex.  In fact, I am now a better cyclist than prior to being diagnosed.

Sometimes you can get faked out.  I thought my back muscle pain was that the stuff was finally catching up with me.....turned out it was because I was coming down with the creeping crud!!!

I have some minor achiness, but nothing that slows me down.  Unllike my ankle I trashed this past summer cycling in the rain.  I still plan on skiing this winter.

So don't assume that you will be slowed down.  Some women are, but the majority do just fine.  I would assume that until proven otherwise.  I don't play tennis because I can't hit the ball.  Unfortunately, Arimides didn't help with that either, so I stick to the stuff I am OK at! Good luck. - Claire