Hi. Well, as of yesterday I’m off Anastrazole for 4 weeks, then on to Exmestane. My joints were starting to get unbearably painful. I’m feeling positive there is so little on the forum about exmestane and hope that’s due to reduced side effects. How are you Exeter friends doing? X
Good Luck with your treatments and therapies. Sending my love to all you girlywhirlies.
Dellywelly xxxxxxxxxxxx
Rubycat, you are tip top friend always and I’m on the case with a note book to hopefully note lack of symptoms - and a bit excited to have 4 weeks off all meds - hoping not to walk like Wallace and Grommit in The Wrong Trousers!! I was being very lazy and should have named you both Emma and Lena Mary! Thank you lovely Delly Xx
That’s the one! Xx
Hopes the examestane improves things and will be watching with interest, 7 months on anastrozole hasnt got any better! X
Hiya everyone … it’s Emma from Exeter. So so sorry to hear about those of you experiencing problems with anastrazole. I now feel very guilty as I’ve not had any side effects - so I’ve been stressing it’s not working properly. My BCN says this is not the case so guess I just have to trust what they say. I also have the zoladex injection once a month to make me menopausal, no probs with that either.
I was so stressed and nervous about starting anastrazole thinking I’d be in pain all the time - so in that respect I’m very very lucky.
I do remember before I started that my BCN said if I did have issues that many other women have improved symptoms by taking high strength evening primrose oil, high strength cod liver oil and high strength glucosamine. Have you tried this for your side effects?
Aside from no side effects I’ve had shingles, tonsillitis and hacking cough in the space of 2 months. …so maybe that’s to make up for no probs on anastrazole. Lol xx
Hi Emma. I think you’ve had more than your fair share to deal with! I’ve taken glucosamine and evening primrose oil at high strength for several years, as total hysterectomy left me immediately menopausal and I wasn’t allowed HRT - I was on the point of begging for it when BC diagnosed. I have to say I had issues for the first few months with nausea and flushes with Anastrazole but then settled. It was only when I went to the surgical review this week that the dr said give another tablet a go. I am not sure if it is the tablets causing the joint pain but 2 days off has left me far more comfortable. I do believe in taking them though, as I’ve been hit twice now with eostrogen fed cancer, so will persevere. I think it’s only the unlucky few who have bad side effects but it is noticeable how few are on the site talking about exmestane - watch this space! There are a few of us from the Exeter area floating around! X
I suffer from severe pan from Anastrozole; I believe. I have IBC ( inflammatory) stage 3 B. Been taking anastrozole 2 years. I honestly worry its destroying my joints. Pain incredible after activity. Only relief I found heat, and lidocaine patches.
Hi
I thought it may be useful to update on how I’m getting on off the Anastrazole. I’m committed to starting the Exmestane in a couple of weeks (BC was my second hormone fed cancer), but am (given the following!) anxious about starting another drug.
I had put the side effects I was struggling with (particularly the fatigue) down to the after effects of radiotherapy and also my head catching up with what I had been through. I’m not really a complainer and thought any side effects worth it, to stop another cancer getting me. It was difficult to pick out what side effect was due to what. However, this is what I’ve noticed since stopping anastrazole:
- The fatigue has gone completely
- I have more energy
- My concentration and memory have both improved
- I can do my job with more confidence
- I now feel 52 and not 92 - I can get off the sofa with a middle aged “oof” rather than feeling as if I need a hoist!
- My libido has improved
- No more than the odd warming menopause reminder - maybe one every other day, no flushes
- Improved mood - even my OH nervously said I seemed happier!
- I feel joy
- I sleep!
I am committed to taking Exmestane, as there are so few negative comments on here. I’m holding out for it being better than Anastrazole.
Cherry, I do find glucosamine has helped me and joints. I had been taking ibuprofen but on typing this, realise I haven’t taken any for a while! I’m not anti medication and have always followed medical advice. However, the last few weeks have been a shock to find me again.
xx
It’s been an eye opener the last few weeks. Hoping it’s not just a blip but will see how the next tablets go. It’s been a heck of a wait for that MRI Rubycat xx
I’ve reported the back pain to my renal consultant, who ordered bone scan, then x-ray follow on, then from those results, I’m booked for MRI this week. He said he would write to oncologist to ask for change from anastrozole, as I am showing high serum calcium, bone thinning and have a patch on my femur that doesn’t look too good. He said anastrozole is known to be the cause of this. Funny how oncology underplay the side effects. For me it’s not just a bit of pain, it’s a real physical effect on my bones and joints. Feel like blood has to squeeze through joints at the moment!
Ouch, that sounds rotten. It’s funny my oncologist told me I’d get used to anastrazole, but the surgeon said stop straight away! X
Hello Dellywelly xx
Hi all… I really need some advice. I have started anastrozole after the exemestane side effects made me feel nauseous all day & joint pain was horrendous. I had been on tamoxifen for 2 years and had what I thought were bad side effects. I am 43 and in 2014 was diagnosed invasive breast cancer stage 2b it was 4.9cm & I went on trial to see if I could get a lumpectomy which I did as went to 1.9cm with chemo and 30 rounds of radio. I then had preventative surgery and had my ovaries & fallopian tubes out hence post menopausal now. The nausea is less bit joint pain the same. I can cope with pain buy not this… I am crying from the pain. I have crohns so any anti flammitory is causing that issues… I am so tired and sore and am at my wits end. I was given ammitripilin when on tamoxifen but made me muzzy headed so I stopped, I take gluclostamine, turmeric, vit d, magnesium natural aids but no difference, I am also having insomnia… I don’t know what to do…
Hello,
I am new to this group and would love some advise on night joint pain. My knees are waking me up at night throbbing. I try and exercise every day to help with the pain but this is getting unbearable at night particularly.
Any advise/ideas would be greatly appreciated.
thank you
So much to say if interested I will finish later
Of to work
As a new anastrozole taker - 4 months now
My docs n I both agree one should b taking calcium n D3 when taking Anastrozole. I believe this is protocol. (How much was the question). The D3 helps the joint pain. Also weight bearing exercise.
This is the path I took. Please note if need proper medical terms, I will look up for you. Below is layman terms and summary.
- I took 1 month of research n questions b4 I decided to take Anastrozole (or different pill or no pills)
- Anastrozole can cause osteopiana or osteoporosis - bone density test should b done b4 taking any of these pills (exem, taxo, etc)- Bone density test was done on right hip and tailbone. Right hip showed mild osteopenia. Anastrozole takes calcium from bones. I believe that is part of joint pain.
- blood work from prior records (annual blood work, blood work when flu, blood work results when determining bc, etc) plus get new blood work.
- based on 2) n 3) I worked out what I though necessary and brought info to docs.
We came out with calcium n d3 amount - so I take my pills, walk twice a day, n at work I move as sitting to long make u stiff
Off to work
Hope this helps someone
Hi everyone, I had my bc treatment 3 years ago - mastectomy, chemo and rads and been on anastrazole since then. I haven’t been online for two years as I was never really aware I had any problems connected with my treatment. I have had really bad arthritic fingers and thumbs for years but much worse in the last couple of years. I thought this was just the normal progression of arthritis, until I saw my surgeon for my regular annual checkup recently. For the first time I was asked if I had any joint pain. When I mentioned the pain in my hands, which is really severe now, he said it could be the anastrazole making it worse. I had also had cortisone injections into my thumbs a few months ago which had no effect at all, and the surgeon said the anastrazole could prevent the cortisone from taking effect. He suggested I talk to the oncologist about changing to something else.
Im now wondering whether or not to ask to change. It seems from this forum that all the hormone blocking drugs have some side effects. I do also feel tired and have hot flushes, mainly in the form of awful night sweats. But my hands are so bad, I’m taking paracetamol and Tramadol but there isn’t a lot of relief even from that. I’m afraid if I talk to the oncologist he will say (as I’ve heard others were told) that anastrazole is the best insurance against recurring bc, and I will have to choose between recurrent breast cancer and arthritis. A rock and a hard place!
Dear all,
not quite the same, but I was switched to exemestane + zoladex after (really) not getting on with tamoxifen, and I started experiencing joint pain (quite bad in the mornings). I spent 2 weeks with vegan friends, and the pain went away completely. So no cause-effect is sure, this is anectdata, but I was quite surprised and am certainly keeping my change in diet. When I came back home, I ate some leftovers with cheese in them and next day the pain was back - when I was more careful the pain went away. It could be worth a try.
I take valerian every night to sleep through the hot flushes, btw, seems to work.
Good luck,
Julia
I too have pain pretty much constantly in my wrist and fingers and it’s quite depressing. I sometimes take paracetamol just before bed which gives me a better sleep. Maybe not as harsh as aspirin. I do a lot of exercise and after 9 months although I cannot lift heavy weights yet I’m building up gently. Also found Tai Chi really helps. Good luck.
I had severe thumb joint pain. I used religiously voltaren rubbed in the joint twice a day. It helped my joint pain. My doctor felt it was arthritis. I feel it was the anastrazole. All I know the voltaren stopped it. Walk half hour every day that also helps