For Arimidex (Anastrozole) users, new, past, and ongoing

I've been on Anastrozole since February of this year (only 4 more years to go!!). I have the hot flashes and night sweats but nothing unbearable. What has suddenly gotten worse is the joint pain in my feet and thumbs. It's only bad when I first get up in the morning, but after I get up and moving, it gets better. Luckily it hasn't stopped me from working out. I didn't have any of the weight gain that other people have talked about; actually, I have lost 10 pounds since I started the medicine. I would also like to hear what people do to help deal with the joint pain and hot flashes. I did hear from someone who takes Potassium to help with the side effects, and even though she swears by it, my oncologist says he has never heard of that. My thoughts are with you, and I hope the side effects are OK for you!!

I just started Arimidex a couple of weeks ago.  I had been on Femara since the end of last summer but I was experiencing more aching than I did on chemo.  I also developed a trigger thumb suddenly after about the first six months.  I did a washout period of 2-3 weeks, then switched over.  I am finding less joint pain on Arimidex - I had been having trouble getting out of the car and taking the first few steps, and also standing up after sitting for any period of time.  At the same time I stopped eating gluten and I am wondering if this has been helping also.  I had read on the other threads that some have noticed less joint pain when they did this.  I am walking 4 miles a day with problems - once I am moving my joints don't bother me.  When I first get out of bed, probably the first 20 steps or so I am very stiff.  What time of day do you take your AI?

Thanks for starting a new thread on this topic. I have been on Anastrozole since Sept. of 2011 and have not experienced any physical side effects. However, my blood sugar on subsequent blood tests has been elevated for no apparent reason. I am not overweight and I have a good diet. I have my next check-up on Monday so will find out then if it continues to rise.

nancyjac - thank you for starting this new thread. I just sit here and watch as the posts on the other one climb to almost 5,000 - and I have to tell you it's intimidating.

I got my Rx for Anastrozole on January 3rd of this year. I haven't opened it yet.

My MO said I could wait til I was off the post-surgery/TE fills pain meds.

I gave her a gazillion reasons why 1) I didn't NEED this drug, and 2) was AFRAID of this drug.

After my BMX, my risk factor for recurrence was 1% - 2%.

I had mostly DCIS, with a microinvasion of IDC: one area that was 1.5mm (half a grain of rice) and .5 mm (a grain of salt). Neither one showed up in my final pathology report. They said the core-needle biopsy must have gotten it all.

I was also 14 years post-menopausal, and I'd had a hysterectomy, so there was no way I had any excess estrogen floating around. She kindly pointed out that estrogen was continuing to be produced not only in the adrenal glands, but also in body fat, of which I had plenty.

At that point I made the decision to enter a medically-supervised weight loss program (Optifast) and am almost at my goal. So far I've lost almost 50 pounds. The MO says this has further reduced my risk factor by 23%. So now it's at .77%? Less than one percent?

I explained that I had so many other medical issues going on in my life, especially osteopenia, degenerative disk disease, spinal stenosis, and fibromyalgia. It was already difficult for me to get out of bed in the morning.....and despite going through a ten week chronic pain management program, there were still days when I needed Vicodin during a particularly nasty fibro flare.

She mentioned that not all women get side effects. (Hard to imagine, while watching those posts on the other thread add up every day...) I also kept hearing my mom's voice (a 26 year BC survivor when she passed at the age of 87) in my head, saying "Honey, you won't know until you try." I also read many, many comments from Stage IV women who wished that the AIs were an option for them.

So I told the MO that I would be willing to try the Anastrozole, but that I would be keeping careful records of any side effects. She understood. I said I MIGHT try another drug should the SEs be debilitating. She understood. I said that my QOL was more important to me, and that there may come a time when I said I wanted to stop completely. She agreed.

The only remaining issue is the fact that she also wants to put me on one of the bone-building drugs. THAT is one thing that I will probably refuse, especially with the current research showing so many problems....

Here is something that has really surprised me: SpecialK mentioned this in her post.....since beginning this diet on March 22nd, my fibromyalgia and joint pain has diminished considerably!

I don't think it's from weight loss or exercise alone, even though I am now able to go to the gym, water aerobics, ride my bike, and walk a few miles a day.

I believe it was getting off the white sugar, white flour, and GLUTEN. (Optifast is gluten-free.) I always wanted to go on an elimination diet to see if it would have an effect, but it was too hard - waaaaaaaa - and now I've been gluten-free for four months. I won't be adding that back into my diet.

I got a reprieve on the Anastrozole while I was on Optifast. This week we slowly start adding real food back into the diet for the next 14 weeks. I see the MO in September. I have a feeling I know what we'll be talking about....

I'm in my third month of Anastrazole and have had absolutely NO side effects! I keep waiting for something to show up, but so far....nada. No fatigue, no weight gain, no joint pain, no nuttin'! My MO said MOST women have no or very minor SEs. I am MANY years post-menopausal (age 65) and my bone scan was fine so I'm not concerned about bone loss at this point. I'd rather start out taking something knowing that I can quit it if necessary.

Another happy Anastrozole customer! 7 months in and no complaints. I also get monthly Aredia infusions. I do take glucosamine, am not overweight and am physically active not only at work but I excercise almost daily. I am also NED! Some people do have bad se's but you will never know until you try it. You can always stop. Caryn

Nancyjac, this thread is very helpful, thanks for startingit. I'm still frightened, but will let you know how it goes once I start arimidex.



Susannah

Will be finishing off my 5 years of Arimidex in August. I was a little 'creaky' and 'flushy' in the beginning, but I just kept busy and moving. Once my body adjusted, I was fine and I have had not had any problems; weight stayed the same, bones are still good as is everything else.

A couple hints to help those just starting out:

* I think some of the SEs attributed to arimidex are actually 'just' post treatment SEs. I especially think this is true of feeling down/mood issues. You have been on a fight or flight mode since your diagnosis, and suddenly you are DONE! That takes a good deal of physiological adjustment, at least it did for me.

* if you have been exercising, keep at it. If you haven't been, start. It's great for the mood, the figure, how you feel about yourself, helps fight any weight gain, keeps your joints limber, keeps the bones strong, etc. etc. etc.

* a daily serving of prunes is a good bone builder

* be grateful that there is something we can take that really does reduce our chances of recurrence. I can't think of any SEs that would be worse than that. For me, chemo reduced the chance that cancer would come back by 20%, Arimidex by 40%....that is HUGE!

Nancy, I have a friend who just finished her 5 years also. She went into it with osteopenia too but didn't experience any more bone loss (she does a lot of weight bearing exercise). It is something you will want to keep good track of though, possibly get a yearly DEXA instead of the usual every two years.

I got a card from my MO. She wants to see me in September. I've been flying under the radar on Optifast, but I guess she's been keeping track of me on the computer!!!!

Rats. She gave me a reprieve from Anastrozole until I got to the Transition phase of the diet, which I started on Thursday. I thought maybe if I didn't tell her, she wouldn't find out?

Ha!

Seeing the PS next Thursday to discuss exchange. Maybe in August?

Nancyjac - I had moderate nausea off and on for the first two weeks of taking arimidex.  Hasn't returned at all in the 3 months since.

You could try taking it with food (or not with food) or at a different time of the day to see if that makes any difference.

I started arimidex last november, I think. Within the first month I had stiff fingers, legs, and couldn't make a fist with my right hand. But I noticed in the last month or so, the stiffness is much less. I've been on Zoloft for a while, no hot flashes. I have arthritis in my left knee, but have been doing physical therapy and the pain is improving. I seem to be less tired, too... Still fuzzy headed at times.



If you start arimidex after chemo and rads, I do think it's hard to disentangle the SE's at the end of treatment from the arimidex SE's.



I gained at least 20 lbs on chemo, but as of this week, I've lost almost 30 since last August.... Exercise and low carbohydrate eating, and practicing mindfulness. I don't know...it's not like the angsty dieting that never worked in the past.

Lee7 - I am on a different AI, but I take mine at lunch. Taking it in the evening, especially when I tried Anastrazole, gave me insomnia. I went from having it take me an extra 15-20 minutes to get to sleep, to a few hours, to not sleeeping at all. I was like a zombie after 2 weeks. Mornings didn't seem to work well either. Now I set my phone alarm to remind me to take it at 12:30. So far that seems to be working. :-)

Trish - your storypretty much mirrors mine only mine started within days of taking it. Apparently I am extremely sensitive to something in Anastrazole. I am currenty on Aromasin and have had virtually no side effects. My only concern is the bone loss aspect. I cannot take anything oral or injectable for osteoporosis. I know that Tamoxafin is better for the bones, but I am concerned about side effects. Also I have read that the better option is 2-3 years on an AI and then the balance of time on Tamox. This would be after 5 years. All the other studies I've found show no difference at the 10-year mark whether you've taken 5 years of an AI or 5 years or Tamox.