Arimidex - Coping with the SE's
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The sores in the mouth were almost gone so I started taking the Arimidex again and now they are back with burning and sores on the tongue and under the tongue and every time I brush my teeth the inside of the mouth gets sore and pain and burning start,dunno if I take this for 5 yrs. Anyone else have this? I can take the weight gain,vomiting,nervous,anxiety and depression and pms but this burning of the tongue and constant sore mouth and gums no cant take this.
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The sores in the mouth were almost gone so I started taking the Arimidex again and now they are back with burning and sores on the tongue and under the tongue and every time I brush my teeth the inside of the mouth gets sore and pain and burning start,dunno if I take this for 5 yrs. Anyone else have this? I can take the weight gain,vomiting,nervous,anxiety and depression and pms but this burning of the tongue and constant sore mouth and gums no cant take this.
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I am still feeling good on the Aromasin. I do continue to take Effexor. I only have small pain in my hands and knees. I still get a headache. I feel much better than I have in a year and a half. My sleep is good. I am so glad my Onc Dr switched me to Aromasin after a 6 week break.
I am glad I looked to this thread. I first heard of the possibility of a change and that it was just as effective to use one of the other two AI's (that I know of) and thus was a reasonable possibility. I had been feeling so terrible I was thinking my quality of life was slipping so low I needed to look at the option of just going off of Arimidex vs the risk. I am so glad my Onc had a change in mind for me.
Ginger
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try gargling with Biotene & maybe try their toothpaste too
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Layla 2525 - during chemo I made a rinse with water, 1 teas. of salt & 1 teas. of baking soda, (I saw it on this site) I kept it in a small water bottle in the bathroom and rinsed a few times a day. I never got a mouth sore all during treatment.
Ladies, as I posted I have been off the Arimidex (generic) for a week and a half and the depression has lifted. I had my last hercepting (1 full year) yesterday YIPPEEEE!!! I saw my Onc. who said lets try Femara, and Lexapro (antidepression). Just looking for feedback on both of those drugs if anyone had past experience with it.
thank you ladies, Ginger M.
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Yep I think you right ruth, I found an old travel size tube of Biotene for dry mouth in my desk at work and it helps so I will probably go get the full size until I go to my MO next Wed and give him my list of complaints. Went at 4 mph on the treadmill other evening and now have pulled the intercostal muscle and the right rib is killing me. gotta get the chromagranin test for circulating tumor cells and the creatine urine test today to take to him next week but quit taking the Arimi to see if I can get my mouth sores cleared up first. I finished my 14 day sample so would need to take the prescrip to see how much it is and if they suggest a generic for cost lowering. MO says I have good insur and shouldnt cost much..??? He looks like he is on last leg,how do these drs work..doesnt the med board chk to see if they are 100 yr old?
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Layla--the medical board doesn't check a doctor's age. If the check clears the licence goes out!
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Layla, I had mouth sores also (not as bad as yours, though) when I first tried the generic version of Arimidex. The pharmacist told me the active ingredients were the same as arimidex but that the inactive ingredients could be what was bothering me. I had read somewhere on here that the TEVA brand anastrozole was the closest to the brand name arimidex so I switched and never had any more problems with mouth sores.
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Layla
Biotene...toothpaste, mouthwash AND gel ( to carry with you) - really helps. So sorry you've got this SE.
Another vote for TEVA. Costco got a different generic, and I refused to buy it. They got TEVA for me. I like the MADE IN THE USA label on the bottle. Seriously, I don't mean ill to anyone who buys medicines in other countries, I know most of the Vitamin C in our vitamins comes from China, but I started on TEVA with no change in SE's from the brand name - and I'm determined not to mess with it.
MostlySew, I know just what you mean and I DON'T WANNA KNOW...seriously, it makes such a positive difference - of course, if someone says absolutely the worst thing you can do - well, I'd reconsider - but the STINGING PAIN is gone....aaaahhh......so let us know what your doc says. I'm not telling mine
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Bi lateral lumpectomies, no chemo, just finished 6 weeks of rads and now about to start that little pill ;-) Just curious how soon the side effects started for all you guys...thanks,
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Laurel64...the side effects started around week 4 for me. Hopefully, you won't have many!0
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I just picked up the generic made by Mylan. Almost six weeks on the AZ brand, freebie from BS. No major SEs yet...hard to say when you type a lot if the slightly sore hands are SEs..... Slight heating up, no real sweats, and an occasional headache stab, which goes away immediately if I massage my temples. Had to stop jogging (began again after two years off due to knee problems) and now have tendonitis and can only walk...which doesn't burn the calories....and have gained weight--stress eating, of course adds to that.
Hoping the generic won't make things worse....will report back. Hope you have minimal SEs. Laurel64.
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Been two weeks off generic Arimidex due to SE and I feel like my old self again. I hate that drug and swelling cramping hands and feet, mouth sore, dizzy, anxiety and sweats. heading into surgery tomorrow and then contacting MO so he can put me on an alternative drug after recovery.
Has anyone switched to non generic and received better results? My Oncologist acted like it was the first time he has heard these complaints...huh?0 -
Bogie, your MO is typical of many. They pretend ignorance (or may actually be clueless) and act as if they haven't heard the same complaints from other patients. Perhaps it's because they are not keeping abreast of new stuff and so don't want to commit. Your complaint, if you were to go back to many of the 150+ pages in this thread, is rampant here. Very annoying. I think our MO's are learning more from us than we are from them. Frustrating.
Chris13, I went from the brand-name when the generics came out last year to Mylan and have found no difference for me. Hopefully you will be okay on it but, if not, there are others.
Laurel64, the SE's can start at anytime from the first week to months down the line. It's different for everyone. Hoping you don't have any of them (that's also a possibility).
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I've been having some major hair loss and head itching as one of the side effects (at least I think it is) from Arimidex. So last Friday I decided to take a break from it and see it the hair loss would slow down and my head would stop itching. I also called my Med Onc and told him everything that had been going on. As of yesterday when I washed my hair the hair loss has decreased and the itching has ceased. Last Thursday was when I took my last pill. I have been Arimidex free for 5 days now and what a difference it has made. Very strange the change in not taking such a tiny pill. Any way my Med Onc called and he wants me to have a quote "thyroid panel" ran the whole gamut was the way his secretary put it. LOL!! since my hair is coming out. Really, I guess he too is in denial about the side effects of Arimidex? I have my thyroid checked every yr. and it's o.k. I have been on Levothyroid 0.25mg for over 2 yrs now. They removed 1/2 of my thyroid gland back in Jan. 1989 due to a goiter. The 1/2 left still functions but I always felt sluggish so they put me on a very mild dose of med. Kind of feeling frustrated. guess I will have the labs done to pacify him.
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Mimi I have't heard of hair loss as a SE of Arimidex. Your break from your AI may help you have fewer SE's in general. I know my break and then going on to a different AI, Aromasin was a huge releif for me. I have very few Se's now, a little hand pain, a mild headache in the morning, minor knee pain. My Se's on Arimidex and generic was a long list and I was in real misery every single day and it was only getting worse. I am so glad my Onc switched me off to Aromasin. I know they are different for everyone and I hope you find a good solution. This is important medicine.
Ginger
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Has anyone made the switch from generic Arimidex to Femara? feedback???
thanks Ginger M.
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Gingerbrew hairloss on Arimidex is one of those SE's that is listed in the small print but can happen. It just doesn't happen to many people. Unfortunately I guess I am one of those few that it did. I had the hair thinning/loss on the Tamoxifen too. But more than that I was also concerned about the fatty liver disease I have developed and they didn't even mention it. Go figure docs.
ginger_mea - I have a really good friend on another thread that just recently finished 5 yrs of Femara. She did pretty well on it. Very few side effects with the exception of hair thinning and some mild wt. gain. She is now feeling well and doing great.
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Thank you mimi - I was having terrible depression/anxiety from the Arimidex, the Onc. gave me Lexapro I started it today, but I do not like how I feel. She also said I could try switiching from the Arimidex to Femara, so I'm thinking of not taking the Lexapro and making the switch and praying that I do not have depression/anxiety from the Femara? Its such a juggling match with everything. Ginger M.
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ginger_mea....I just switched from Arimidex to Femara 11 days ago. I took a five day break inbetween (my idea) and my depression lifted by the fifth day...it was wonderful! I couldn't believe how quickly it happened. I'm still feeling well and my headaches are gone also. I'm hoping this lasts! I am still having the muscle aches and joint pains and my right hand is still numb and tingling (and still the hot flashes!)but it's so much easier to deal with when I'm not depressed.
Of course, I know we all are different but it might be worth a try. I hope you get to feeling better soon..
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What are the mouth sores like? Six weeks on AI, and my mouth is not dry but my tongue and the roof of the mouth are somewhat sore....like when you eat too many tomatoes in August. No little cankers, however.
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ginger_mea why don't ya'll get your Med Oncs to prescribe Effexor 37.5mg for 1 week and then increase you to 75mg and take one cap each night about 45 mins before bedtime. This will help with depression/anxiety and hot flashes or night sweats you may incur. You don't feel bad in the morning when you wake up. That is what I have been taking for the hot flashes/sweats, but it is an antidepressant. Just works on the other. It has been a life saver. It is also not expensive. My co-pay is less than 15.00 on BCBS and I have the insurance where you pay for the med and then file and are reimbursed 80%. yeah I know that stinks! Good luck!! but you are right Lexapro isn't one of the best antidepressants to take in my opinion as a nurse though the side effects do eventually level out. And if you are having major depression it is great! you just need to give it time.
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Barb - thanks for that ray of hope with the Femara. I am thinking of waiting another week with nothing and then starting the Femara. and not taking the Lexapro anymore even though it was only today I took it for the first time, don't like it... Ginger M.
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Hi Ginger mea,
You are not alone. I have been on Arimidex and have trigger fingers, the usual pain in the am, headache all of which I am finding answers for between supps and exercize/yoga....however I am a a depressed wreck. I manage all the conditions of happiness in my life, but continue to be so sad. I have been taking effexor for a few years, now with increased dose and still no happiness in sight. I believe this is caused by nada estrogen? Pleas tell us how this new AI works. I am so happy to see someone here with my diagnosis and difficulties. You are a help! Thanks and hugs, Heidi
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ghsnead - I will definately post back once I am on the Femara as to how it works out, I just don't want the depression! I can't take it... Ginger M.
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I understand about the depression ginger_mea. If it comes back on the Femara, then I may try Tamoxifen again since I've had my hyst/ooph but that would be it. I hope that something works for you soon.
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Because of the side effects from Anastrozole, my doctor wants me to try Femara. Anyone have any experience with that? I read about the side effects, most of which seem similar to Anastrozole. What about hair loss? When I read that, I freaked out. It's been three months since last chemo and I have about an inch of hair. If I lost that, or it thinned, I don't know what I'd do. HELP!
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Hi, friends:
I found this thread the other day and have been pondering what to do - I've decided to take a couple of months off of arimidex and see if I feel any better. I haven't gotten a decent night's sleep in months, and the joint pain is horrible.I'm going to talk to my dr. when I go back in July, but in the meantime, I'm taking a mini-break from stupid arimidex.
Here's to sleeping well.
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Justina--I had some hair loss when I started Arimidex, but that stopped after a couple of months. I actually had more hair thinning with tamoxifen than with Arimidex. The side effect profile of all the AIs is similar, but individual women react differently to each one, some who have severe SE on one do not have as intense or severe SE on another. It's worth trying a switch to see if it helps.
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Justina, all I know is that hair loss is a side effect of the AI's and Tamoxifen, but not everyone has it. It's something like maybe 3-5% that have it. You have to dig very deep to find it even listed as a SE. When I called my Med Onc and reported my hair loss and head itching as a SE he called me back and wanted a thyroid panel done. I begrudginly went and had it drawn today. I've pretty much had the head itching stop since I stopped the med last Friday and the hair loss has decreased since I stopped the Arimidex. But oh well I made him happy. It seems that Oncologist do not like to admit that their meds cause these kind of side effects so it seems. LOL!
But don't worry you may not have hair loss because many don't. Many have no side effects at all
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