Arimidex - Coping with the SE's

Idahogirl

Hi ladies, I have been reading this site for about a month. I started anastrozole a little over a month ago and so far haven't noticed side effects. I am keeping my fingers crossed, but am a lot better equipped to cope with them from reading all the tips here. I am trying to stay active but the over 100+ degree weather has made things challenging the past week. My main problem has been leg cramps, but they started before I started the med. Thanks for your posts. You help people more than you know.

ruthbru

Leg cramps: eat bananas and drink tonic water.....with or without the gin

Anonymous

also LOTS of water - I find when I am very hot, and or dehydrated, if I go to rest, I get leg cramps - so I think just plain ole water helps a lot too...

dobie

There has been some recent studies which have supported the use of vitamin D to reduce SE of AIs. Although there is much controversy about how much is enough or too much, the endocrinologist I recently saw suggests that 5,000 iu per day of D3 is safe for most and probably needed for adequate levels in post menopausal women. Always a good idea to check with your physician and request checking level periodically.

Lee7

dobie,

did it say what a good D3 level is?  I know the range is something like between 30-70 to be normal, but should we be aiming to be closer to the 70?

dobie

Ideal range is highly debated. The evidence and expert opinion goes back and forth about what benefits vit D has beyond bone health. I have been told toxicity does not occur until around 150 so 70 would be safe. Toxicity has only been found in doses of 40,000 iu per day. I just had my level checked and it is at 27 after taking 3000iu per day for the last year, so I was advised to up it to 5000. I think the endocrinologist would like to see it at least 50 . If anyone else has any solid info on this issue, I would be interested to see it.

BTW-actually Vitamin D levels are measured by checking 25-hydroxy vitamin d which is a vitamin D precursor. There is even debate about whether assays being used to test 25-OHD are accurate. How about if we just stick leeches on our toes!? LOL!

nwest125

I had mine checked a couple of months ago and he said it was a 52 that I was good. I still dont know what normal is

Nancy

Idahogirl

Ruthbru and SunflowersM, I really appreciate your suggestions for leg cramps. Some days I know I don't drink enough water so will watch that more. Also the bananas and tonic water. I will try both. There are definitely more fun things than waking up in the middle of the night with leg cramps:)

ruthbru

Normal is 30-70, so 52 is good.

If those remedies don't work for the leg cramps, you can always try the old folk one of putting a bar of soap under the sheet.

Idahogirl

Thanks Ruth.  I think I will try the soap too, as it would be easy to do.

ruthbru

Let me know if it works; people are always swearing by it, and I am always going, "Really?"

forestgirl46436

Hello,

Can you tell me more about problems with Amirdex and sugar. I started Amirdex In May of this year 2012, and had to stop it, because of the terrible/severe joint pain. The last straw was when I started having vision problems. 6% of the population has vision problems while on Amirdex.

So my onco put me on Tamoxifen. My joint pain is a little better, but morning stiffness is severe, and my joints seem to lock up if I try to get up from a sitted/and or laying down position. This has effected all of my joints.

I just wonder if this is a permanant side affect, or will it get better with time ? 

I don't do much sugar.  Any help and or input from anyone would be much appreciated.

Thank you.

forestgirl46436

I was only able to stay on Amirdex for about 6 weeks, because the joint pain was so severe. I could barely walk in the morning. I felt like I was 95 yrs.old. I am only 47. My onc switched me to tamoxifen. But my joint pain is still really bad. I hope time heals this. If this is something more long term  I am not going to be happy. good luck to you.

forestgirl46436

I was only able to stay on Amirdex for about 6 weeks, because the joint pain was so severe. I could barely walk in the morning. I felt like I was 95 yrs.old. I am only 47. My onc switched me to tamoxifen. But my joint pain is still really bad. I hope time heals this. If this is something more long term  I am not going to be happy. good luck to you.

dobie

Honestly ladies, if you havent had your vitamin d levels checked I would suggest that. There is good scientific evidence that vitamin d supplementation will help with the joint pain. Unless you have other health issues doses up to 5,000 iu per day is considered safe.

208sandy

Dobie - I had very good Vitamin D levels when on AIs and I was still in agonizing pain - also my PCP doesn't think large doses of Vitamin D are safe - she says no more than 1,000 IU per day - people should check with their doctors before they take any supplements or meds while under treatment.

Lee7

I initially had my Vit D checked and it was 24.  I take 2000 IU a day and have had my Vit D checked every 3 months for this past year. I'm staying steady at a level of 62-65 now, so I'm probably sticking with that dose.  I do feel better being up at the higher end. 

Some women need to take more Vit D to keep their levels up than others.  I think the test is important to be able to figure out just how much an individual needs. (my opinion, I'm not a doc!)

dobie

Sandy, Sorry about your agonizing pain. Unfortunately, not everything works for everybody. I agree, you should always let your Doc know what you are taking. If you do the research yourself you will find that many authorities believe that higher dosages are safe and higher 25-OHD levels are more beneficial as Lee has found from her own experience. And I suspect Lee is right on about different doses are needed based on individual needs. As I mentioned in my earlier posts, there is much controversy. So just an option for those who may be interested.

Layla2525

lee, my MO took me off Arimi because my tongue swoll up and I couldnt talk and breathing was difficult and all the other symptoms, very concerned because he didnt recommend anything else and yes it very well could be one of the fillers, but guess i'll never know.

Went to derm and got Protopic and lips healed quickly but now got burning mouth, wondering if its the plastic from the TE cause I stopped the Arimi in March or April.

ruthbru

Important to remember that not every wierd medical thing that can happen to us is as a result of Arimidex. Often, if you dig deeper, there is another cause. Also important to keep in mind that it could be a filler causing problems, not the drug itself.

Lee7

Layla2525,

Since you stopped the Arimi and now you have mouth issues again maybe something else you are taking/eating is causing this.  My suggestion would be to try to make a list of all the supplements, drugs, new foods, spices, toothpaste...anything going in that maybe you weren't using before you started on Arimidex and had those first allergic symptoms.  Maybe consulting an allergist would be helpful.

Its odd what we can be allergic to. I had tried Calendula cream during rads because many women had good results using it.  I started turning bright pink/red and would have thought it was just the rads doing it EXCEPT...I had used some of the cream on the opposite side of my body and sure enough it started reacting too.  Once I stopped using it, all my skin, even the area getting rads became lighter.

I have a nice face moisturizer, I love the scent of it, it feels great and it gives my cheeks a healthy glow...I read the ingredients....It has calendula oil in it!  So that was what gave me the pink in my cheeks.  Who would guess?

Keep looking into it. Hope you can find some answers.

mcgaffey

Checking in...I finished my 5 years about 2 weeks ago. Can't remember exactly. Is that a good sign? I have moved to the US and started work on Monday. Worst thing, I forget my thyroid pill now since I don't have the "important" one to take. So I need another little routine to get back in the habit. Differences? The buzzing in my ears is better, in fact not bothering me any more. The dizzy feeling seems much better. Those were the worst things and a bad knee which has been better for some time now. I have gone through the stress of packing, moving, starting a new job, new furniture and most everything. Talk to you all later.

Moderators

Our message to you was a sincere attempt to remedy a situation that was not apparent to us and that was being publicly discussed. We were simply asking for insight. Just trying to help.

Moderators

Our message to you was a sincere attempt to remedy a situation that was not apparent to us and that was being publicly discussed. We were simply asking for insight. Just trying to help.

ananda8

I believe in your sincere desire to have this board be a place of calm.  It is   Those who use multiple identities, sock puppets, to generate a ban of a long standing member are the ones who should be removed from this forum.  Please check IP's before instituting bans.  A permanent ban should never be left to software.  It should require a review of a moderator. 

Moderators

To clarify, we banned Sunflower after she was disrespectful. No accidental ban due to software occurred. We were asking for her to help identify (and delete) sock puppets that she was publicly discussing in a forum. Her response to our ask for help was:

"It is SO obvious...really.  I'm not getting into it..." and then:

"and that's because I'm not willling to do the WORK that you PAY staff for- you can see ISP's better than anyone.

PLUS - who is nattygroves, Lisa whatever - Will circulate your PM to friends on BCO, and see if my comments to you warranted that kind of response." 

Nobody was supposed to be pulled into this, but we hope that you understand what occurred from our side. 

gmb731

I was on armidex for 3 months and had real bad hotflashes. Now the doctor has put me on Letrozole. I"m wandering what expect from this drug. I haven't started them yet. Wanted a few days of relief. Can someone tell me there side effects on this drug? Thanks

dobie

All the aromatase inhibitors including Arimidix, Letrozole and their generic equivalents have similar side effect profiles. Some people seem to do better on one type or another and they are equally effective. It is common practice to exchange one for another if side effects become intolerable. Good luck with the Letrozole, gmb731. Just give it a try and hope for the best. Some people find that they get good relief from hot flashes with treatment with Effexor or acupuncture

barbyjean

Hi, ladies. I have experience changing from anastrozole (arimidex) to letrozole (femara). Geez, the new words I have to learn!!! I had all-over pain while on anastrozole, so my doc had me take a 2-week break and then switch. I felt great during the two weeks. I also realized that I had been depressed, whether from the drug or the pain I don't know. Now I have been on letrozole for 6 weeks and my chronic low back and hip pain have gotten much worse. The last few days I have been unable to function very well until 3 p.m. when the pain finally lets up.It's not much fun. I will keep on this one for at least another month to see if I adjust to it. The other side effects haven't bothered me at all. Hot flashes and sweating are unpleasant but I can deal with those until the weather cools off!

My MO said that she would put me on Tamoxifen if the AI's affect my QOL too much. That one has some scary side effects also, but maybe they won't affect me.

Good luck with your SE's, gmb. 

NativeMainer

babyjean--have you tried taking the pill at bedtime?  Some women find they are less stiff and have less pain during the day that way.