Arimidex 'Holiday'???

MinAZ

I've been on Arimidex for 3 and a half years. I was very lucky because I didn't have problems for the first couple of years. But it seems to be catching up with me now - the fatigue, fuzzy thinking and memory, sleep issues. I have been having more and more joint pain, especially my knees but also hips, shoulders, etc. I tried to ignore it all and not blame Arimidex - for example I had had some knee trouble before BC. Now an ortho surgeon has told me that I will need knee replacement within the next few years - and that really got to me!

I see my onc next week, and I think I'm going to ask about taking a break to see if it makes any difference. It would be nice to know this is not the permanent state of things. I guess I would go back on it and finish my 5 years, although I wonder if there is really any data showing that 5 is a magic number - why not 6, or 4? 

My question - have any of you taken a break? How long? Did it make a difference? Did you go back on?

Thanks much - Minz

SusieMTN

Yes, I did take a break, it was wonderful.  I was taken off for a month and it was THE best month.  I got to see what it is like to feel normal again!  I have been on both Arimidex and Aromasin.  After a complete melt down the Onc put me on Tamoxifen which I am tolerating SO MUCH BETTER!  I take my Tamoxifen twice a day and I am doing well. 

Susie123

I'm on an Arimidex holiday right now. My ALP has been elevated, they've done the bone scan and liver scan and all is well there. The only other thing that could be causing the elevation is the Arimidex, so the onco has take me off of it for a month to see if my ALP comes down. You can't live without a liver and if the ALP stays up it will damage my liver. I'm sleeping better without the Arimidex.

SusieMTN

Susie you its funny but I also had an slightly elevated ALP, and in the back of my mind I was wondering if it was the Aromasin or Arimidex.  I was having such a tough time with it and I sort of felt like it was becoming rather toxic to my body. 

What was you ALP and its reference range?

horsegal13

My onc called me today and told me I can quit Arimidex for 4 weeks. I have severe knee pain and I can hardly walk lately. I feel 80 and I'm only in my 40's. He said to call him in 4 weeks and tell me how my knees are, he wants to be sure it from the Arimidex and not something else. I have always had knee pain, but this is 'severe'. I guess I don't mind the break, maybe I'll start feeling better.

wenweb

I feel like a baby compared to all of you.  I am only been on Arimidex since the end of Jan 2010 and I wanted to take a break because I am so sad and depressed. (I also have some extenuating life circumstances besides BC).  I saw my onco yesterday and she said that I probably feel the way I feel not because of the Arimidex, but rather because all of the estrogen is being sucked out of my body.  She also said that it would take at least 3 months for it to get out of my system (I asked if I could go off for one month). It sounds like it doesn't take more than a month to get some kind of positive response.

 I have approached her about going off or changing it prior to now and perhaps taking Tamoxifen due to the bone density issues with the aromatase inhibitors.  She always steers me away from anything besides the Arimidex and my husband thinks that it's because I'm in some kind of study.  I don't agree with that, but I feel kind of paranoid now.  She doesn't want me to take Tamoxifen because she says it has more side effects ( plus I was already in menopause when I was DX'd), but my surgeon even suggested that I might try Tamoxifen because of my concern with the bone density issues.

Fortunately I do not have any of the joint issues and I feel badly for all of you that do, but it also sounds like it wasn't necessarily an immediate side effect.  Some days I feel like not taking anything at all.  My onco type Dx test showed that I have a 9% chance of recurrence.  It almost seems worth the gamble compared to the mental anguish.

Enjoyful

wenweb,

Anti-depressants, baby!  I didn't use them after my first diagnosis in 2004 and I had a really hard time.  I requested them in February, immediately following my chemo for mets, and they've made a huge difference.  (I can't recommend Effexor as it made my depression worse, but I've had good luck with Celexa.)

Please don't suffer with depression if you don't need to!

My onc gave me just a 10-day vacation from AIs when I started having symptoms and I felt so much better, almost like my old self.  Perhaps a brief AI vacation will do you good! 

Take care!

E

wenweb

Enjoyful,  Thanks for the encouragement.  My Dr. is not recommending that I take a holiday from Arimidex.  I bit the bullet today and had my PCP RX me an antidepressant.  She told me that she had gone on them herself for a brief period and the difference was huge.  I'm nervous about new drugs especially ones that are potentially mind altering.  My intention of thought is that it will be a big help for an uncontrollable time in my life.  Many thanks.  wenweb

KinAZ

MinAZ  hello from KinAZ....too funny, are you in the phx area??  i live in chandler...we have a great group of ladies who met here, and we meet once a month...pm me if you would like more info.

as for the arimidex holiday...i have been on arimidex for 2 yrs and have had 2 "holidays"....they were both a 2 wk period.  the first break was in june...and it gave me great relief from severe joint pain, but it was short lived,  onco put me on aromasin after the break and within 3 wks the severe joint pain returned.  the aromasin also gave me more sleep issues, so went on another 2 wk break and had no relief, but i went back to arimidex.  it was a difficult choice.... we discussed the tamoxifen, but they really prefer i stay on the arimidex, and use the tamoxifen as a last resort. 

 my worst symptom is the joint pain.  had a visit with my prim dr for allergies and broke down in tears because i felt like i was 100 yrs old.  over the counter meds dont touch it, and i dont want to take pain meds if i dont have to.  he ran tests to rule out arthritis and other inflammatory diseases...but all came back normal, so we know it is the arimidex.

one thing i have learned, the symptoms seem to cycle.  after going back on the arimidex and still in severe pain....it subsided about 2 wks ago...just a bit stiff...this also happened a couple times the first year.   lasts a few wks then the pain builds up again

another thing.....when my allergies/asthma flared up, i was on steroids, and that was the best i have felt since starting arimidex...i know steroids are not good for you, but if they use them occasionally for asthma, why cant they use them for a vacation from the pain....?????  sometimes that break from physical pain gives one a mental lift!!!!  besides we had massive steroids during chemo!!!!  i see my onco again next month and intend to discuss this matter...  sounds like the arimidex has added to your joint problems, and i agree with you, why 5???  my onco said the odds are greater for the beast to return within the first 5 yrs.....i hope you feel better soon, and would love to meet up if your in the area.

hugs, karen

MinAZ

I saw my onc this week. He said OK to take a month off - hooray! He said then, depending on the difference, I can continue my last 15 months on Arimidex, or he can put me on Tamoxifen. He said studies show the combo is OK. But for post menopausal, at least some of it must be an aromotase inhibitor as they have better results. So I'm planning to take October off  and see him in early November.

gg44

I am on a 30 day vacation from arimidex also. My pcp said I was having side affects from it. This after being on it for two years. I had severe fluid retention and joint pain. The next day I went to my onc and her nurse said I couldn't be having side affects after two years and that if I was going to have them it would have showed up at first and they don't wait that long to begin. She really made me feel stupid. Then she told me they would take me off for a month and also that I didn't have to take my vitamin d or iron. This was all before I even saw my onc. Then when my onc came in she just told me they would take me off for a while and come back in a month. When I go back I am going to talk to my onc in private and let her know what happened. I already feel better already,  so my pcp was not wrong.

MinAZ

GG - I didn't really have any problems for the first couple of years either, but now I do. My bone density is not bad, but it is somewhat worse than before Arimidex. So although I don't take iron  I certainly do take calcium and D3.  Scary to know someone so uninformed as that nurse is working in oncology - good idea to talk to your onc in private!

somanywomen

I was wondering if I could take about a week off, just to see if the toe /leg burning/numbness would go away, then I would know if it is arimidex related since my docs are not giving me a straight answer...Don't think it would hurt since I try to stay on a estrogen inhibiting diet....Any thoughts???

wenweb

I remember reading somewhere that the AI's stay in your body for about 6 days.  That made me feel that if for some reason I missed a day that it wouldn't matter that much.  A week may not be enough time.

gg44

Thank you MinAz. I am certainaly going to have a talk with her. I am also going to tell that nurse to come to this web site and get an education!!!!!!!!!!

horsegal13

I have been off of A for 2 weeks now. My knees are not so stiff anymore, but I went to a knee specialist Monday and he told me I have 'severe arthritis' and my left knee is shot. Knee is bone on gone, 2 big spurs there too. I am  having a total knee replacement in Feb. or March 2011. I have to call my onc and tell them what is going on, and I'll probably go back on A tonite.

SusieMTN

wenweb - My Onc told me the side effects of AI's stay with you a long, time.   Not sure what is correct but it make sense to me, otherwise how could one be taken off of any AI for 1 or 2 months without running the risk of recurrence. I believe the Onc said to be more specific that you could stay off up to 2 months without risking ........

What I do know is I felt the best I have felt since diagnosis while on my month of off of the AI I was taking.   That being said my joint pain was REALLY bad and I was walking like I was 90+ years old.....

wenweb

SusieMTN,

I don't know how I came up with the 6 days...maybe lack of estrogen to my brain :>)  When I asked my onc about taking a month off to see if my mood improved, she said that it would take about 3 months before I would notice any changes.  That's not exactly what I am hearing from some of the other posts.

Susie123

My ALP was about 50 points above normal, and rising. My onco checks liver enzymes as part of the routine blood work he does at regular visits. After being off the Arimidex for a month, my ALP was still elevated. I'm back on the the Arimidex, and have an appointment with a liver specialist. Oh well, if it's not one thing, it's another.  

horsegal13

Talked to oncologist's office, and told them about my knees and arthritis. I am now back on 'A'. I am actually glad, I was nervous being off of it. I don't want my cancer to ever come back. I am ready for stiff knees again, but oh well. The major pain is gone from the steroid shot, I can walk normal again!

love2banter

Has anyone ever tried being on Anastrazole for a month or two and then off for a month - then on again. My symptoms came after a few months on the drug. I can't seem to find any research on this kind of staggerd schedule. Seems to me that it would be worth a try,

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