I just came back on here for the first time in over a year. I am just over 4 years post op, and have been taking Anastrozole since a year after my op (I was on Tamoxifen for a year but the side effects were too bad, so my Onc switched me to Anastrozole). Hopefully I will be able to come off Anastrozole in February 2018, and I can't wait. My joint pain, insomnia, fatigue and continuing chemo brain (I have terrible memory lapses and sometimes struggle to finish my sentences because I can't remember the right words) notwithstanding, the thing that has had the most profound effect on me is the loss of libido. I wrote a very honest and detailed post on this subject way back before this website changed its format, but as a consequence of the change the post has disappeared. Basically, I too have lost all sensation and response. My GP suggested it was a psychological response to everything (🙄) but I am absolutely certain that it is the lack of Oestrogen. I find it impossible to feel arousal and feel somewhat disconnected from my 'female' parts. Lubrication is/was a problem but there are ways round that, however the problem of non-arousal has proven insurmountable. My husband and I are still close and intimate, but I am personally counting the days until I can stop taking the Anastrozole and hoping that I will get at least some of my response back. I know plenty of post-menopausal women who enjoy sex, so I'm optimistic that some sensation will return once I stop taking the aromatase inhibitor. BUT I have not so far encountered anyone who has stopped taking Anastrozole and had their libido return. This seems to be a subject about which most people don't want to talk, but it is the subject closest to my heart. When I read your post on the subject I had a 'eureka' moment, because at last I found someone else who is experiencing the same side effects, and is prepared to talk about it!
Ps I just found my original posts on the 'sex and relationships' closed group. If you haven't done so already, you should look on there. There are a lot of us in the same boat as yourself, and although there are no easy answers, it's good to read about other peoples' experiences and suggestions.
all what you have described i have the exact same symptoms you are not alone gel.
when tablets stop(another 1year) hope will be better.
But then you have fear of its return xxxx
Hi Cherry, yes can totally relate to what you describe and have heard similar from many othet ladies. I sorted the lubricant side as it was horrendous, firstly ending in urine infections but when explained what was happening 'inside' realised the importance of using lubricant. I find Yes the best as it is totally free from any unwanted additives. It's hard when we have to adjust and at first I felt inadequate, but I am trying to Train, my mind. My partnet has been brilliant, but I have to make an effort otherwise I just won't bother. Oh joy, hugs and xxxxxxxx
I am currently not in a relationship, nor have been since my diagnosis & starting on this medication. But do feel switched off from that side of me.
I have heard as ladies progress thru the menopause that all kinds of changes occur but then resolve, obviously we are being medically alterred for the moment.
I hope others may be able to give you more hope.
Hi All, I started this thread some time ago and have ended up realising my issues with aches and pains are minimal compared to some. For whatever reason, I'm having a very good run of mobility and painfree days of late - I'm 3 years down the line, so whether it does eventually ease for some or that I'm having a temporary supple and pain free time I don't know. What I do know is that I still have a problem that doesn't fluctuate! I've posted about this before and never had any replies ... but as we have a few members that have been reading and answering this link, I'll try it here. And I'll try and word it better than I must have done before!
Since I've been on anastrozole, I have lost my libido. I'm in a loving marriage and we are still intimate but my body is no longer sensitive to touch. I love cuddles and being close but the actually physical response has gone. Is this because anastrozole blocks oestrogen? I would love to know how other members feel and do hope someone replies. We've found solutions to lubrication so that's not a problem - it's just my head. Or body. Or both. Thanks, Cherry
Hi lexilou, I was taking accord brand now been given a different one, begins with T, sorry tabs upstairs. Joint pain seems worse, my hands in the night are worse and big probs sleeping. And, of course hot flippin flushes. Mammo on 23rd December and see my surgeon 15th jan, so if no improvement will have to beg for help. I have a friend on Tamoxifen and the side effects seem far worse than anastrozole. Hope everyone is doing ok, great we can chat.lol xxxxx
Thanks for replying. This is like a sort of momentary all over the body prickly tingle - perhaps it is just a bit of an allergy to the particular soap I'm using because it always happens just after a shower but I'm getting it less now. I think the pins and needles feeling you have is probably peripheral neuropathy I think. I had that too and it is quite a common side-effect of treatment but take heart because the good news is that after several months it will probably stop . Keeping my feet smooth and moisturised helped but if you want more info try googling Peripheral Neuropathy and you'll get more comprehensive advice.
Hi feisty flora.
I'm sorry nobody has replied to your post yet. I think what you are describing are similar to my symptoms. Is it like pins and needles? I had this just in my fingers, face and toes during chemo and had to have a reduced dose. Now it has returned and is more widespread so I don't know whether this is from chemo or anastrazole or something else! Have you asked any medics for an opinion? I am probably going to see my GP - don't expect him to be able to do anything but at least it may stop me worrying. 😄
I am also so tired in the afternoons, but I dont sleep very well during the night. My aches have become more and now have trigger thumb. But, we have to carry on. Best wishes to all xxx
My worst symptom on Anastrazole is the total tiredness for about half of every day. I really hope this symptom eases up. I have become a Lady Who Naps. Luckily my working hours are a bit flexible.
Someone in these threads suggested changing the company who make your tablets helps. I did have sudden pains in my hip and leg and I switched brands and this helped. My GP told me that Arimidex costs a lot more than Anastrazole. It probably has fewer side effects. They gave it to me at the hospital when I was first prescribed and so my first 3 months on it were trouble free(before I had to chage over to the anastrazole because I was getting it thru my GP from the local pharmacy) . Hope this helps.
Yes I can relate to everything you have said - its a trade off and not a very fair one considering all you have been through both physically and mentally. People seem to think that taking themeds is the easy bit so understanding and sympathy only really comes from sites like this. Any tips yes be kind to yourself, use this site to rant and rage nobodies going to mind cos we have all been there. Go get some really high count sheets and pillowcases they feel like silk and cool down - keep a hand fan by your bed , headphones for anipod on really low (dont want to damage your hearing) . Swimming is great but can be still be a bit strenuous at times float , tread water or just stretch in the water is all good for your joints . I really do feel for you girls It does get easier ( today is a good day) My daughter is just setting out on her tamoxifen journey . Just wish we had light afterwards.Must be some girls out there with this knowledge but maybe its a good thing that they have moved on anddont visit this site anymore . Good luck pet.
Hi ladies, get some joint pain but did have probs before so not sure. Some hot flushes but definitely gained a little weight, tummy! But, again not been doing exercises as I was before the bc prob. Oh, sometimes just want to scream, but then I think of all the people who are suffering a great deal. We have to carry on and try to be strong, even on those crappy days when you just want to hide. Great we can share our feelings on here. Sending love and xxxxxxxxx
I'm 5 years in and was due to come off last September now being kept on till February. I have also tried to gain a little hope for the future but havnt got anything back - hope you get some replies.
Hi, I am only 3 months in with Anastrozole. Joint pains - yes! I am swimming and walking and trying not to stay for long periods in front of the computer when working to manage it.
But how about the downy fine facial hair below the ear and outer jaw? Anyone else? I dont want it to grow more and forwards to cover my face. Is there a risk of that? I read on a US site that an Endocrinologist was prescribing a diuretic called Aldactone to reduce it, and that its not so much the hormone therapy but the fluctuating hormones that cause it. Does anyone else have the same problem and has anyone found a way to reduce this?
I am three years down the five year line and really struggling with Anastrazole side effects. I get a lot of headaches and migraines, nausea and hot sweats at night. I know I shouldn't grumble because I am clear of cancer but I just want to feel better and hate having to cancel things due to feeling awful. I also still get very tired bad everyone expects me to be better and full of life and energy. How can I when I lose so much sleep? I have tried changing to the other drug but things were worse if anything. I am considering cutting down to one every other day but if the cancer came back I wouldn't be able to forgive myself. Do intake the gamble? I really a quite desperate.
i have been takeing anastrozloe almost five years and it has been hard did u have a low sex drive and my body hurt so bad sometime and the itching my jouit hurt so bad will all of this goaway
I've only been taking Anastrozole for a few months and so far, touch wood, no aching joints but what I have experienced is a sort of prickly feeling all over my body like a lot of tiny heldgehog quills sticking in me! Has anybody else experienced this as a side effect?
Although I wasn't on Anastrozole I was on Letrozole for 5 years after 5 years of Tamoxifen and finished Letrozole March 2014. Sorry to say that the aches and pains or rather stiffness in my case do not go away and in my case have got worse. Now if it is due to lack of oestrogen thats causing this then I suppose its not going to go away straight away but as everyone is different I could be the exception and it could be because I had 10 years of medication.
I find walking really helpful and have been out for 2 walks a day for the last 18 months and have made many canine friends and their owners along the way which can't be bad.
There is no real treatment sadly Cherry , I have had two mastectomies , one in January and the second in June after it metastacised to my other breast , plus two WLE in my scar area for recurrence !! I am on 3 monthly check ups with chest x-rays and CT scans as needed ... bit if a bummer as I thought I had cleared my magic 5 years !! Just shows you can't ever relax with this foul disease .
Hi Jill, thank you so much for your reply. Mmm. Food for thought - and I'm really sorry you've now discovered you have angiosarcoma. I didn't know what that was, but have since googled it to find it can present itself i mature women as a secondary cancer after completion of treatment.
I also heard of a lady who asked to continue anastrozole after her 5 years as a safety security measure despite aches and pains. I'm not sure, but I think the GP suggested a half dose .... but now I don't know whether to look forward to anastrozole's end or to ask for is continuation!
How are you, Jill? And what treatment are you havng now?
I really appreciate allfedback on this subject, and yes - I believe they're finding anastrozole a relatively new but very beneficial after care medication.. Thanks - Cherry
I took Arimidex ( Anastrozole ) for 5 years and would happily have gone on taking it for however long they deemed helpful . I had some aches and pains in my hands with swollen knuckles in my little fingers . Also some general aches and pains in my legs , but nothing really major . After I stopped taking it the aches went and my knuckles returned to normal .
I stopped taking it in June 2014 and in Sept 2014 developed Angiosarcoma in my left breast , I am still not convinced that this is a coincidence , and would happily have gone on taking it given the option . I also believe that the latest findings show that it is very successful in extending lives .
Hope this helps anyone taking this drug .
I have also wondered about this.
I still have 4.5 years to go on it and my hands are really stiff and painful,
Hope someone answers
Hi - anyone who's taken anastrozole knows that the most common side effect is joint pain. I'm no exception and after 3 years so far have grown familiar with the twinges, creaks, hip and knee pain plus some stiffness and lack of suppleness in general. Some of this I guess is pretty normal for late sixties and I'm not grumbling at all. I still enjoy an active, happy life and am only too willing to take anastrozole as part of ongoig treatment.
But my question is this: when I do eventuallystop taking this aromatase inhibitor, will I regain some of that more flexible painfree mobility again?! Just wondered ....! Thanks, Cherry