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Anastrozole, side effects do they get better

Member

Re: Anastrozole, side effects do they get better

Hi Joolsey
It's not joint pain that bothers me ...its the low low mood it puts me in...plus mega anxiety!..i was thinking of changing to Tamoxifen
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Member

Re: Anastrozole, side effects do they get better

Hi Lena had the same problem with different brands spoke to GP who put the brand TEVA which I prefer next to the Anastrazole on prescription and the chemist now gets them for me hope that helps good luck xx

Member

Re: Anastrozole, side effects do they get better

Hi lovelies, have not commented on here before and I actually can't believe I am reading this thread and feeling almost relieved.  Not happy to hear that so many are suffering but that it is not just me who is going through this.  I have been on Anastrozole for 2.5 years, I tried Tamoxifen and Exemestane too but could not get on with them.  For the first couple of years the joint pain was bad but bearable, the past six months it has become unbearable.  My joints seize up when i sit for too long and in the morning.  I can barely hobble down stairs when I get up and my fingers and toes are excrutiating, it's like I have set.  My knees and hips are bad and I have now started to get achilles tendonitis in both heels.  My wrists are agony and I am spending each day applying Ibuprofen gel to get through.  I am 51 and I feel like I have aged 20 years in the past two.  I want to exercise, walk and hulahoop and I am in too much pain I feel like it is a vicious circle.  I feel knackered, tired and in constant pain.  When I sit down for too long, or kneel down to play with the kitties I can barely get up again.  Have spoken to my GP and he is arranging for a blood test and xray to see if I have rheumatoid arthritis but if not, and it is the anastrozole I am not sure I can stick it for the full 5 years. I am on zoladex to keep me in chemical menopause but I am beginning to wonder if I will ever feel fit and healthy again. You hope when you have gotten over the surgery and settled into the medication that you can restore some sort of normality in your life but this feels like it is getting worse not better :-( x Jools xx 

Member

Re: Anastrozole, side effects do they get better

Hi all who have responded to me!

 

Thanks so much for your replies, I must say I am rather relieved to know it is not just me with these ridiculous aches and pains!  But I so wish there werent so many of us.

 

We just came back from a week in Dorset, and walking up hills my legs suffered terribly with pain (day after) - felt as if I had been kicked in front of legs - whereas we did the same last year and I didnt suffer any pains!  I just wonder if the longer one takes Anastozole the more affect it has on the reduction of oestrogen?  My partner says I should ring the breast clinic, or the Oncologist at the hospital where I went for radiotherapy. It will be interesting to see what advice is given. It is a hindrance and not a nice one having aches and pains.Some days are better than others though, which is a bit of a mystery.

 

I am on these meds for 5 years (three more to go) but was told at the onset it may be increased to 10 years. A friend who had bc three years before me was on Tamoxofin - 5 years on and could do another 5 years, but she decided not to continue.  Her symptoms mainly extreme tiredness.

 

Thank you again to all you lovely ladies who answer these posts.

 

Member

Re: Anastrozole, side effects do they get better

I'm taking heart from all your experiences so far and the fact that it's a bit of lottery for what meds suit us.  I started Exemestane in early June and have gone from a very fit and agile 51 year old, to being quite debilitated with joint and muscle pain, particularly shoulders, hands, hips and knees. After tolerating surgery, chemo and radio fairly well, I was taking 5 exercise classes a week and swimming, but now am far less able.  The Oncologist suggested a switch to Anastrozole and it's been a week so far with no change in symptoms.  I am taking 900mg of painkillers 3 times a day to manage the pain which I hope will subside in time and am seeing the GP tomorrow to ask for something stronger and some physio to help get moving.  I was talking to a lady last week who has been on Anastrozole for 13 years with no side effects at all.  So, although I'd like not to be taking any meds, as I'm sure we all would, I'll grin and bear it as for now as I find the thought of not taking it is more scary.  It's good to be able to share information and experiences on this site.  Wishing you all the best for your recovery.

Member

Re: Anastrozole, side effects do they get better

Suffering too at the moment on anastrozole..it comes and goes but aches seem pretty bad now, maybe the colder weather and a change in footwear..can't wear my comfy pumps in the rain! Mainly knees feet and ankles with me and a pain in my hip and down my skin for some reason that keeps me awake at night.I can have energy and be working away and then fatigue just hits.Difficulty getting up and down from bending- I'm a cleaner- and it does make me a bit fed up.Still mourning my dad and crying most days so a bit low with everything.
Member

Re: Anastrozole, side effects do they get better

Hi. I've been on Anastrozole for two years. Accord brand. I hobble on rising each morning but I'm ok after about 5 mins. I walk the dog 2 miles each day and feel fine. I've now got a bit of a tummy..it was flat when diagnosed and I don't eat any more! Unfortunately, it was explained that a lack of oestrogen is to blame somewhat for aches, middle aged spread, dry skin and tiredness. My Oncologist at the time said 'you can choose aching muscles/bones tablet (anastrozole) or weight gain tablet' (tamoxifen). I chose her first suggestion. I think we all have different experiences so it is very difficult to know what to recommend. I feel really sorry for the ladies suffering awful side effects. I guess I'm just lucky...for the moment. X
Member

Re: Anastrozole, side effects do they get better

Hi Lena

Your side effects sound terrible, I really hope you get them sorted soon. I think you're right that we are Guinea pigs in a way, trouble is we're so scared of not doing what we're told because of the potential consequences. X
Member

Re: Anastrozole, side effects do they get better

Hello Slyolddog

I have been taking Anastrozole for 9 months now and the pains in my knees make it nearly impossible to walk.

I am more or less housebound now  apart from being dropped at the supermarket door and leaning on the trolley to get round the store.  I reported this to the oncologist a couple of weeks ago and he has changed my tablets to exemestane.  Only problem is that they are steroidal.  Have just taken two so far and I can actually walk through to the kitchen without hobbling now so will continue with these to see how it goes.  

 

When I asked the chemist not to change the brand of of Anastrozole when they gave me two different kinds, she said they had to take what they got!!!  So will see what the exemestane will do.  

 

I feel sorry for all the ladies who are suffering, I sometimes think we are guinea-pigs.  Chin up and I hope you feel better soon.

 

Lena x

Member

Re: Anastrozole, side effects do they get better

I've asked my doctor to put a note on my prescriptions asking the chemist not to give me the Teva brand. This one seems to not only give me joint ache with cramps in lower legs/feet but also make me very moody.
I've been taking anastrozole for nearly 3 years and can't wait to come off it. I also have mornings when my ankles are painful, but again this is worse in the Teva brand.

I can't speak for anyone else but as I'm 56 some of these issues could just be age related, although I didn't have them 3 years ago.

Hope this helps.
Member

Re: Anastrozole, side effects do they get better

Hi, I have been taking Anastrozole for just over two years, but find the past three or four months suffering with a lot more muscle and bone ache, mainly in legs and ankles. When I get out of bed I find it hard to walk down the stairs as my ankles feel seized up.  After about 20 minutes of generally moving around the ankles are better, but it is the muscle ache that is more the nuisance!  Also my finger joints on waking up do hurt a bit, but again after moving them for a while it eases off.

 

Really, my question is, is this normal for someone having been on Anastrozole for so long?

I take 25ug of vitamin D per day, and have done so for several months.

 

Feedback very welcome!

Member

Re: Anastrozole, side effects do they get better

Hi i have been on zoledex and letrozole 9 weeks, im 53, i did suffer joint pain in the beginning, but started taking magnesium as i read this helped, i have since stopped taking magnesium leading up to my op, so far the odd niggle but its very doable for me, i do think if i excercise quite alot i feel ok, if i have a lazy day i can expect abit of joint psin when i get up. I would definatley say give it a go, i was scared to tske it, and i dread the zoledex injection every month, but it kind of ways out the worry i would have if i wasnt taking the treatment, goodluck

Debbie x
Member

Re: Anastrozole, side effects do they get better

Hi

Optimissy is right.  It's always good to remember we don't always hear here about those who are managing medication without issues.  It's also good to remember there are alternatives, if you don't get on with treatment.  I can't remember if I've said on this thread I found a lump at about the same time I was swapping medication.  Luckily it was nothing to worry about but it made me realise I will keep taking the tablets, in the hope they work their magic and keep me well.

As an aside, I'm over 3 months into Exmestane now, with no joint pain, no insomnia, flushes back to what they were pre treatment (i.e. one or two a day - more if a heavy work day!) and a more even mood.

Wishing you all well x

 

Member

Re: Anastrozole, side effects do they get better

Hello

 

I've been on Anastrazol since Jan and now with Zolodex into the mix too.

 

Yes, I do have problems with very stiff painful joints however, I feel so much better in 'myself' and actually feel like me again.  The 2 years I was taking Tamoxifen I always had a low level headache and my mood was quite low (looking back I think I may even have been a bit depressed).  I also couldn't stay up past 9pm at the latest as I'd get so tired!  Plus I had little downy hair growing on my face! Smiley Surprised 

 

I'm an active just turned 50 year old and I I'd choose this over Tamoxifen in spite of the joint pain as everything is so much easier to cope with if you feel mentally good! Smiley Happy I can stay up in the evenings and also have a hair free face! Smiley Happy 

 

I may at some point in the future look into trying a different AI but I am concerned as to whethet it might affect my mood again or have different side effects.

 

Hope this helps!

 

MM

xx

Community Champion

Re: Anastrozole, side effects do they get better

Ah, you are already getting hot flushes then, even without the tablet....maybe the Ladycare Magnet thing would be helpful to you then, whether or not you go on to hormone treatment. There is a thread somewhere on here about it, and some people get amazing relief from it, and some don't. (Wish I'd known about it 10 years ago when going through regular menopause actually, when i did get some flushes, not a lot, but always at inconvenient and public times!) You've time to do your research anyway, and see what other folk on here have to say and then make an informed decision. It's all a bit of a trial sometimes, isn't it, this breast cancer lark and it's still early days for you. Take care. xxxxxx

Member

Re: Anastrozole, side effects do they get better

Thank you Optimissy, you have given me some insight on taking this drug.  I am 57 and still suffer the most herrendous hot flushers, which have effected both my sleep and work life, so have more hot flushes than normal would just be a nightmare.  I will think long and hard about this drug, and may also wait until I have finished my radiotherapy before taking it.  I am a very active person, and the thought of not being able to do all the things I love would be awful, and I have read that they are not always nessary to keep from having secondary cancer.  Again thank you for your very helpful reply.  x

Community Champion

Re: Anastrozole, side effects do they get better

Lozzie I wouldn't be too  hasty to refuse the Anastrozole without a bit more thought, and by reading a few of the posts on a similar thread a few weeks ago, particularly from a lady who has secondary bc and really wanted to highlight the importance of preventative hormone therapy.

The first thing to say is that inevitably this Forum will have more posts from people who are struggling and and are looking for support and advice, and that is a great benefit from the Forum. However, there are fewer posts from people who have had no problems at all and just got on with their life and don't use the Forum, which skews the balance somewhat.

I too was horrified by the list of POTENTIAL side effects when I was prescribed Anastozole, looked at the packet in dread for a week, and delayed taking the first tablet until the last day of rads as I didn't want the risk of a double lot of side effects.(As it was, the rads were fine.) I bought a Ladycare Magnet just in case which is still in its packet - just in case! I confessed to my onc that I'd delayed the tabs for the 3 weeks of the rads and he was unconcerned at the slight dealy.

Well, I've been taking Anastozole since 10th Feb this year and can honestly say i have noticed no difference in my physical condition nor mood, and having deliberately lost a bit of weight since New Year , which has helped the pre-existing arthritis in hips, my joints hurt LESS than they did before BC.  I actually feel fitter than 5 years ago. Not even had a hot flush. I have a theory that post-menopausal ladies like me may have very little oestrogen in the body anyway, so the drug is less of a shock to the system. I'm assuming you are also post-meno as you were prescribed Anastrozole?

The choice is obviously yours to make, and I respect anyone's decision to take control of their own treatment, but you've nothing to lose by at least giving it a try? I'm guessing there will be other posts by folk on hormone therapy in a similar vein to this - we don't all suffer the nasties! Good luck. xxxxxxx

 

 

Member

Re: Anastrozole, side effects do they get better

I have just been prescribed Anastrozole after two WLE for DCIS, I am thinking I may not take these at all and just have the radiotherapy, as looking at all these post on the drug has made me more fearful than the DCIS high Grade.  Feel I will just take my chance.

Member

Re: Anastrozole, side effects do they get better

Has anybody had problems with bruising please? I have quite a few, some of them quite large. I do bruise easily anyway but this is more than usual. Any ideas please?

Member

Re: Anastrozole, side effects do they get better

I have terrible headaches, bone & muscle pain. Feels like electric shocks going off in my body and legs twitching like crazy from it. In ER twice in pat 2 weeks with headache & bone pain. Only gave me an anti anxiety drug and sent me home. Stopped taking anastrazole 7 days ago. Feeling better but not normal yet. William see my oncologist on the 20th.