Doing Well on Aromatase Inhibitors (AIs)
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gailmary, have you tried adjusting when you take various meds ? Insomnia was a side effect for me from aromasin, confirmed by excellent sleep during the 4 weeks I was off for DIEP reconstruction surgery followed by instant insomnia upon restarting. Switching to morning made a huge difference. I have been experiencing insomnia due to depression (unrelated to BC) and have found trazodone to be an excellent aid. I experimented with dosage, settling on 37.5mg.
Sleep is critically important to our overall health- don’t give up on finding a solution.
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MACTAZ—my Anastrozole side effects have lessened over time. I already had arthritis, and it's a bit worse not tons worse. If it's extremely bothersome, I take an NSAID. I have an Rx for a long-lasting one, Meloxicam, which I occasionally use. I'm the most comfortable when I get an hour of exercise each day. I have weak thumb joints since I started my AI, so I open jars with a different technique. Reducing estrogen in our bodies does cost us a bit, but overall, my issues are inconveniences, nothing worse.
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Worry the Pooh-I too have occasional teeth pain. I went to have an exam, and my dentist says there’s nothing there… Even did x-rays. I have decided not to worry about it, but it is annoying.
Mactaz- I have been on Arimidex for eight months now and the joint and bone pain are definitely improving. First steps out of bed are alittle bit rough, but once I get going, I really feel normal.
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hi.have been on letrozole for 16months and yes have joint aching and stiffness.mostly in ams.once up and moving and taking advil/tylenol.it improves..i also.have arthritis so not sure which is what..also in gym program for survivors and the exercises are helpful..hey after all we have been thru to this point..I can deal...have to..hugs.Kaylie
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I had to stop Arimidex at almost the 2 year mark. Symptoms of joint pain, fogginess and a lack of my usual zip would come and go, but the last four months of taking Arimidex my joint pains became intolerable. I tried everything, claritin, exercise, acupuncture and meds for all that time…..my QOL was going. I stopped taking it and feel much better, like my old self. I did have a case of tendinitis in my left knee as well as left hip and thigh pain at that time as well. I had everything checked out and the orthopedist said it probably was due to the lack of estrogen in my joints and muscles! I am fine now, I no longer feel 90 years old every morning and through out the day. My MO and RO had no problem with me stopping the medication. I plan to continue more frequently done blood chemistries and Ultrasounds. I exercise almost every day and follow other life styles that are healthy.
9/23/16 lumpectomy/radiation 7mm pure mucinous tumor, 95% strong Er & PR +, HER2 neg, Grade 1, Stage 1
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Thecargirl - I took a break at about 5 months from arimidex and switched letrozole. Just took another week off (at about 22 months) and it really was a reset. Doing OK again. MO said only about 60% of us finish even the 5 years but you might want to give a different drug a try.
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Thank-you Taco 1946, I appreciate your note. I may consider that, I really wanted to make the 5 year mark, I have been off of it just 5 months. Looks like our timing was pretty close.
Susan
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Thanks all for your thoughts and suggestions, I’m hoping my aches will also get better as Rome goes on. I will continue on anastrozole for at least 6 months to see what happens before I consider a change in meds. Night time is the worse also for me, and I do exercise daily for at least an hr, walking mostly, I just power through. I think I probably need to incorporate some stretch and strength based on the posts I’ve read. I take Advil or Tylenol almost daily, hate that but need to. I also have tramadol for the really bad days.
Thanks again, appreciate your comments.
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I have started adderall.It has helped me so very much.It helps fight fatigue. Bone and joint pain.cognitive impair..I stumble a cross it by just a fluke..It has made a world of difference. It seems to turn my brain on after all the chemo and anastrozole...life changer
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Rzeller--who prescribed the adderall? Your MO? Your GP?
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Rzeller - Welcome to BC.org! While we hate that you're here, we're really glad you found us! Thank you for your post. If you need any help navigating the boards or the main site, please don't hesitate to reach out to us.
Again, welcome to the Community!
The Mods
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I have been on Arimidex for 4.5 weeks and haven't had any SEs but I do have an itchy rash. The NP at my MO office said only about 1% patients have an allergic reaction in the form of a rash so it is not probable. Anybody else out there who has had a itchy rash. Looks a little like poison ivy but only a couple of blisters- the rest is just red and bumpy almost like it's under the skin. The plan is to stay on the Arimidex for at least another week and see if it get s better.
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Hang in there if you can BikerChik. It’s been my experience that several potential SEs I’ve gotten are not related to the Arimidex I’m taking. Having said that, if something should turn up that bothers you check with your MO. Best of luck to you
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(first post) great thread. I have had the prescription for Arimidex filled but waiting on 2nd opinion Monday before starting anything. My husband has had Stage 4 prostate cancer for 5 years now and we are well familiar with anti-hormone meds (he takes Lupron and Casodex). Mutual hot flashes are right up there with mutual orgasms (not). Everything we do is thru a quality of life lens. I am on NO medications now and haven't been for the past 20 years so a little trepidatious. But, the stats on recurrence are clear so I will be taking the pills soon, I guess. Getting a bone density scan as a basline this Tuesday. Doc wants me to get Zometa infusions as well. Stay tuned. . .
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Haliday--if it helps, there's a bunch of us on another thread who did a bit of a gentler on-ramp to the AI, either half dose or full dose every other day for a few weeks. At least anecdotally it seems to help with SEs. I don't know what other treatment you have had/will have but keep in mind the AI is often more important for preventing recurrence than chemo. My BS told me it has "the biggest bang for the buck" and that if he had a female relative who was refusing it, he'd crush it up and sneak it in her oatmeal. Best of luck going forward.
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My experience with the side effects is that they took months to kick in so a slow start wouldn’t have helpe anything -but it also can’t hurt.
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That's the same for me--a slow start wouldn't have helped me for the same reason. My MO advised starting at normal dosage for that reason.
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HikingLady, although you didn’t ask, my advice is that if you experience side effects that affect quality of life, talk to your MO about another AI. There are 3 and women’s experiences vary greatly. Also tinker with when you take the AI each day - insomnia cleared up for me when I switched to morning.
Sorry to read that your family pulled the double cancer card too.
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Runrcrb, I think you meant your message for Haliday. She and I have rather similar BCO monikers! My MO said the same thing that you mention, that another AI can be tried if side effects are difficult. I did have sleepiness when I started Anastrozole for just 1 week or so. I took my pill in the evening for about 2 weeks, and then the sleepiness went away. I've taken it in the a.m. ever since. I'm really doing quite fine on mine.
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Going on 3 weeks for me now. No problems yet
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Haliday, I've had 4 Zometa infusions over 2 years. I get a bit (more) achy on 3rd day after but otherwise it's been uneventful (but nice to have so many chemo nurses stop by to say hi and tell me my hair has grown so long)! Read somewhere to take Tylenol the morning of, so I do. MO says Zometa protects against bone loss + recurrence.
Re switching AIs - talked to my MO about this last week - he said that btwn the three choices, the efficacy is the same. I recently switched pharmacies so tried Letrozole from a new manufacturer and I can tell the difference. Glucosamine is helping most with aches.
Happy Spring to All,
Lanne
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I have been taking anastrozole for 6 months now and have had minor side effects. Initially I had sever leg cramps (which I had prior to taking the AI), but became worse, I called my pharmacist and he recommended CoQ-10, he recommended 200mg daily, which has eliminated the cramps. I haven't had any issues with hot flashes or night sweats. My osteoarthritis and rheumatoid arthritis are more significant but managed with steroid injections, approved by my MO. My issues of concern are fatigue, anxiety, stress, and mood swings. I saw my MOs NP one week ago and she was going to have the MO write a script for a med or switch me to another AI, but I said I wanted to see an Integrative Dr. first then go from there. I know several of you have switched AIs and it has worked well. The referral has been made and I see the Integrative Dr. on May 2nd so I'll see what she has to say/recommend & go from there.
I agree if the AI is interfering with your QOL talk with you MO and advocate for yourself, no one knows you better than you. My anastrozole has had an impact on my QOL, the emotional aspects, especially with my patient hubby! That's why I want to use a non-prescription intervention (often they cause more side effects) and the ripple effect continues. As I have said over many years when challenges come into my life, "good things come to those who wait and patience is a virtue". My prayers for patience go to all who are new to your AI and are experiencing side effects.
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Stellawt57- the emotional impact on my relationship w BF of 23 years is horrible. I believe if he could walk away without guilt, quite possibly he would. The only way to describe it is I can be mean - I'll say or do things, or argue over nothing, anything and everything. Is there a pill for that?For a moment I thought of just stopping the AI. But I can't do that. Then, I could just scream for all the things just out of our control. Bad enough to get BC, mutilate our breasts to remove it, toss in SE from AI's, and "ta da" we're all good.
Sorry, vent over. I'll reach out to MO and hope there is a pill.
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After 7 months on anastrazole, I’m feeling good. My first DEXA scan did show mild bone thinning. My MO has had me increase my weight bearing exercise and my calcium intake. I’ve had a little hair thinning in the front which I HATE, but my husband and sister swear it’s not noticeable. My skin was drier, but got better with new skin care products. The big side effect for me was horrible hot flashes. The ones during the day were annoying, but bearable. The ones at night were a different story. They aggravated my insomnia and I was exhausted. My MO suggested trying a low dose of Effexor. It’s an antidepressant also prescribed for anxiety and panic issues. Part of me didn’t want to take a pill to deal with the side effects of the first pill, but I wanted to at least try. Happily, the hot flashes diminished in frequency and intensity within a few days. I had been dealing with some anxiety issues since menopause, but I didn’t think they were that bad. Within a few weeks, those were much better too. I feel like I used to! My boss noticed, and I hadn’t mentioned the Effexor to her. I mention this as an option for those also dealing with emotional issues. I’ve had no side effects from it.0
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Has anyone had an issue with hives on AIs? I've been on letrozole for a while, and have been getting hives on my palm, elbow and ankle. Itchy and annoying, and also a little worrisome. I'm otherwise free of bad side effects so far.
Mentioned it to my MO, and of course she said it couldn't be the letrozole (right), suggested detergent or product allergy. I'm sure that's not the case. Wondering about others' experiences and solutions. I've been using an anti-itch cortisone cream for relief.
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Miranda-yes, I also have occasional hives since starting arimidex (8 months). Face, hands, legs mostly. Usually lasts just a couple days, but very annoying. MO says not likely related to AI, but I’m pretty sure it is. Sometimes I’ll take benedryl, and I try not to leave marks from scratching!
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Glad to know I'm not alone, Rwns. Hope the Benadryl gives you relief. I read that Zyrtec or Allegra are also good and not sedating, so I may try one of those. The MOs really don't know about all these SEs.
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CindyNY, I hear you! Things that have never bothered me or I could walk away from have now become huge issues with excessive anger/outburst. My fatigue/frustration or stress easily become major anger issues for me since starting anastrozole. My hubby has said I can take my anger out on him which I have, poor guy, but don't any more as he has encountered a health issue that is frustrating him. So I keep it to myself which escalates the emotional outburst. This is why I want to see the Integrative Dr. to try a more natural way to get the emotional issues under control. I see her May 1st so I'll keep all informed.
There are other factors that are affecting my emotional instability; five weeks after my surgery a sister with downs syndrome who was in advanced stages of dementia passed from the effects of the disease. We were every close not only in age, but we did so much together through the years. Even though I knew her time was nearing the end it was still very difficult, then on top of that my hubby's health issue in March, so my emotions are on a roller coaster ride that varies minute to minute. I have told my hubby I'm a work in progress and time will tell.
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Stella - I respect your wanting to find a natural solution to your emotional pain but don't overlook other options too. My cancer patients suffer from PTSD and you certainly have had more on your plate than many.
I knew I was really easy to anger while on arimidex and was amazed how much that changed with letrozolaide. MO switched me from one mild anti-depressant that I had taken for years to another and my hot flashes went away. Hair is thinning (but DH also assures me it's fine) but brain and body seem to be working as well as before.
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I will start one of these in a few weeks after I finish my last Taxol next Tuesday! Hooray!!! You all have educated me and given me hope. I was so scared after reading the thread that had all the SE's. My MO calls me the poster child for SE's so surely I could get a break on taking these. I hope and I hope some more!!
Annie
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