Hi everyone


I’m trying to establish a definite link between taking anastrazole and worsening of symptoms of osteoarthritis in my hips and lower back. I had a mastectomy and full lymph node clearance at the age of 54 in November 2012 after diagnosis of IDC, 3/11 positive nodes and two tumours measuring 5.8cm and 2cm in my left breast. Since then I have had chemo (FEC-T), radiotherapy and then 2 years on Tamoxifen. I have also had a Diep flap reconstruction and several follow-up operations.


The oncologist put me on Anastrazole in September last year and after nearly six months I have stopped taking it and will be making an appointment with the GP next week to request a prescription to go back on Tamoxifen for the rest of my 10 years of hormone therapy.


Before discharging me last year the oncologist’s registrar advised me to go back on Tamoxifen if my quality of life with joint pains etc. was significantly reduced by the Anastrazole.  WELL IT DEFINITELY WAS! Within a couple of weeks of starting on  Anastrazole all my joints were so stiff and painful that I struggled to get out of bed in the morning and only after stretching and a significant amount of exercise like cycling and walking did it start to improve. I also felt very low in spirits, suffered lots of hot flushes and, in addition to having no libido whatsoever I became a ratty, naggy and severely bad-tempered old bag falling out with my stepson really badly and becoming what my husband described as a totally different person to live with. Then, to cap it all, my existing but intermittent lower back and hip aches and pains suddenly worsened to such a degree that I could hardly walk and, even more distressingly for me, I had to give up golf which I am passionate about.  I went to the GP who initially thought my hip problems might be bone secondaries but after an X-ray I have been diagnosed with osteoarthritis in both hips and lower spine. This is something I have to live with and I am having physio but incredibly after stopping taking Anastrazole just a week ago nearly all my pains and joint problems have vanished. I therefore feel that Anastrazole must exacerbate osteoarthritis although the GP doesn’t seem to agree.


Has anybody else suffered a worsening of their existing back, knee hip problems after taking Anastrazole? I feel it would have been very useful to have this information before starting to take a drug that completely disabled me for quite some time. I am of course worried about the SEs of going back on Tamoxifen but the good news is that less than a week after stopping Anastrazole I have managed two 18-hole rounds of golf!



Hi Gay,
I’ve been taking Anastrozole since 1 March 2014 when my oncologist changed my hormone therapy from Tamoxifen due to my body constantly overheating to an unhealthy level and leg cramps.
Reading your post, I can totally empathise with your feelings and frustrations because, like you, I have been suffering terrible side effects from Anastrozole for nearly two years. The worst symptom by far has been the chronic joint pain which has worn me down and significantly affected my quality of life. I am allergic to anti-inflammatories, codeine products and strong painkillers like Tramadol so have limited options for pain relief. After months of severe pain, my GP eventually prescribed Amitriptyline (for neuropathic pain) plus paracetamol which has given me a small degree of pain relief but not enough to make me feel ‘normal’.
You may have seen some my posts (moaning) about Anastrozole. I think I should change my forum name to Moaning Minnie.
Personally, I believe Anastrozole is the ‘culprit’ for the deterioration in all my joints. Hands, lower back, hips, knees and ankles are much worst. My elbow joints are not as bad since taking Amitriptyline.
My body hates being depleted of oestrogen to extremely low levels resulting from the aromatase inhibition mechanism of Anastrozole. Last year, X-rays and CT scan confirmed I now have osteoarthritis. My DEXA scan 18 months ago revealed Osteopenia.
To be fair, the leaflets my BCN gave me about Anastrozole and the online research I carried out did warn about joint pain. However, in reality, I never expected the pain to be so severe. It is hard to believe that some ladies have minimal side effects. We have both been unlucky!
Very happy to hear you can play golf again after stopping Anastrozole. Keep swinging those clubs!
Big hug.
M x


Thank you for your really interesting reply Magical_Moon. It does give some measure of reassurance that I am doing the right thing for me personally in stopping taking Anastrazole because I have weighed up the fears with quality of life and on balance decided to risk it. That is not to say I am not feeling very scared at the moment. I am very much a secret hypochondriac who thinks every ache, pain, lump and bump is something sinister but keep it well hidden most of the time. Now I am not taking any pills at all apart from anti-inflammatories I am feeling so much better physically but not mentally. I also don’t like the thought of going back to the Tamoxifen SEs but have no choice as my cancer was highly ER positive and my tumours were large with lymph node involvement. Another benefit however of stopping taking A in addition to the great pain reduction is starting to look better facially - brighter eyes, skin tone and less obvious wrinkles - as well as no fuzzy head, raging hot flushes and general slight dizziness. Even my love life with my darling husband has improved although I’m sure that’s more psychological than physical. All round the right decision for me but not of course for everyone. I think I was one of the lucky ones on Tamoxifen so I hope it’s as bearable as I remember when I start back on it next week. Gay X

Hi PoppyJ

apologies for delayed response. I am really hoping that I am not looking back on my 2years on Tamoxifen through rose-tinted spectacles because my experience of Anastrazole has not been good. In medical terms (as written by oncologist to my GP) I tolerated Tam very well. However as I face the reality of going back on it again I am beginning to remember that I did put up with quite a few SEs but obviously never so bad that I considered giving up. Main things I think were joint pain in ankles, especially in the mornings; hot flushes day and night but not really strong ones; loss of libido big time and a definite deterioration in my eyesight (prescription went from -1.5 to -3 in a year).


The final straw for me when I stopped taking Anastrazole was the exacerbation of my hip and spine osteoarthritis which is something I obviously had but was not medically diagnosed until I went to my GP in excruciating pain and with such a reduced quality of life at the age of just 58. Oh yes and being such a grumpy old bag it was effecting my marriage!


Does anyone know the optimum time one should leave between stopping Anastrazole and restarting Tamoxifen? I’m no longer under Onc. and will need to be re-prescribed Tam by GP. I would love to have a whole month off to try and clear my body a bit but I’m also feeling a bit unprotected without any medication as I did have big tumours and some lymph node involvement. Gay x

Gay sorry to hear you have had so many problems.  I am right at the beginning of this 10 year long road (couple of months on Tamoxifen) & have been warned it may well be hormone blocker tabs for life by the time I get to the end of that. Could I ask why they took you off the Tamoxifen in the first place? Also, how long does weight gain go on for…is it just the first 6 months while your body adjusts or is it the whole 10 years (fingers crossed not the latter or I could be seriously fat by then). Also does the joint pain continue to get worse or does that develop slowly? I am a keen golfer & tennis player & my life would be dramatically altered if I couldn’t do sports. I have very stiff painful fingers in the mornings already, but they do loosen up once I’m awake. Worried that it might get worse.  I was 51 at diagnosis & am 8+ ER positive. Any advice gratefully received. xx 

Hi Gay,


I, too, have been trying to establish the link between osteoarthritis and anastrozole/letrazole. After a year of anastrozole (actually, just after I had implants - more on that below) I started to get leg pain and this quickly progresssed to hip pain and pain in other joints, so that after about 6 weeks I could hardly get upstairs. This didn’t seem to me to be ‘normal’ progression for osteoarthritis. I had not had any symptoms at all before and was a keen walker. Even after mastectomy I was walking 8 miles a day on Hadrian’s wall (just a couple of months before the joint pain set in.) It was difficult to get the GP and the orthapaedic specialist to accept any link between arthritis and Anastrozole, though my breast cancer team seemed to acknowledge links with joint pain (and it is listed on the pack insert  as a side effect). I was switched from Anastrozole to Letrazole but no improvement. I had Xrays and MRI for hip and back and was told I had osteoarthritis, but it seemed the physical damage to cartilage etc did not match the high level of pain (They seem to make the diagnosis on pain experienced as well as by physical damage). My thinking is that perhaps it is the levels of inflammation that are the problem. 


After 4 years on these drugs my cancer team switched me to Tamoxifen after a 6 week break, but the joint problems continue. I have arthritc type pains in almost all my joints and can find walking round the house really difficult. I was a very fit 62 year old when all this started.


I researched it on Google. (As you do!)  When I put in ‘compliance’ as a search term it came up with lots of scientific articles about the severe side effects that lead to women stopping the drug. Joint pain was a major one (I think I read that 55% of women who stop said it was because of joint pain). Some articles talked about arthritis. Most of the researchers recommended that women don’t give up on the drug just because of side effects but have they any idea what it feels like to be in such pain! 


What is worrying is the unanswered question as to whether the damage is permanent. One article I read was aimed at orthopaedic surgeons (enlightened, as all the specialists tend to stay firmly in their particular box. In fact the guy I was referred to actually boasted about not knowing anything about cancer drug side effects). That article was warning surgeons not to rush to hip replacements if the patient was on anastrozole etc. as the symptoms could resolve themselves in 18 months. (Perhaps there are surgeons and women not making the connection and ending up with unnecessary hip replacements). My pain has only got worse, however, so I am wondering now if the damage for me is permanent.


Another thing. I think it was too much of a coincidence that the joint pain/arthritis started up immediately after my implant operation in 2012, when I had an old implant removed/replaced from the first mastectomy I had in 1991, and had another implant put in for 2nd mastectomy I had in 2011. The official view is that implants cannot cause an arthritic response (or any other effects) and my cancer team agrees. However, two of the docs at my GP surgery are now saying it is always possible and there is anecdotal evidence and there is, of course, stuff on the internet about it. So where does that leave us?!


Hope my story helps to build the picture about what the breast cancer treatments do.