I am on hormone therapy for ten years, and now half way there, started on Tamoxifen but due to fatty liver switched to Anastrazole and then the joint pain and aching bones started. Had a couple of nuclear bone scans to rule out mets. Dexa bone scan showed some degenerative changes for example in elbows, wrists and hands. My GP prescribed buprenorphine patches in 2021 and I increased to 20mcg patches. I was pain free and learnt to swim! Caused bad rashes and she consulted with the lead pain consultant who advised switching to tablets (?oxycodone) or applying steroid cream two hours before the patches, using 2x ten mcg patches instead of a 20mcg. THEN following acquired long QT syndrome, polymorphic VT and losses of consciousness, plus pacemaker upgraded to a CRT-defibrillator, my cardio consultant wants me to come off of the patches, I am down to 10mcg and in pain, bearable for now but may not be when I go back to 12 hour shifts. Yesterday, video call with the same pain consultant my GP communicated with about my patches who advised her. It was so distressing. He told me I should not be on patches for long term pain and I should read NICE guidelines, whoever prescribed them doesn’t know what they were doing. There is nothing for chronic pain except to put up with it, adapt my life style and not work 12 hour shifts. He said if I don’t want to be in pain I should stop Anastrazole , he didn’t know statistics but in real world some women who take it get still a recurrence and some women who don’t have any hormone therapy don’t get a recurrence- so to reduce / get rid of pain it is simple and I need to stop Anastrazole. I said I had spoken to oncology several times and oncologist wants me to have ten years of treatment as largest of my tumours was 5.5cm and all 8cm cancer was grade 3. I was 45 when diagnosed. Lymph node negative but some risk factors such as size/ grade. Detected only when tumour was 5.5cm. Vascular invasion present and radiotherapy due to mastectomy also having positive superficial margins. Second opinion from Royal Marsden said ten years hormone therapy, an AI plus Zoladex. I understand the risks of opioids, dependency, tolerance etc but another five years to go on hormone therapy which I want to complete as don’t want to take risks. Ten years of hormone therapy increases my survival rate at ten years by 15% according to NHS Predict. Why would I stop that because of this nasty unsympathetic pain consultant’s uninformed and ignorant opinion?
Does anyone take/ do anything for joint/ bone pain due to Anastrazole/ other aromatase inhibitors that helps? I am autistic and don’t cope well with pain. Pain that some find bearable feels excruciating to me. I am getting an oncology appointment in the new year.
Have you discussed a different AI? I started on Anastrazole but the pain was intense so my oncologist changed me to Exemestane , I finished on Letrozole in the end.
Also different brands have different side effects - for example I was ususally on Accord Letrozole but one time the pharmacy gave me Sun - NEVER AGAIN it was horrendous
Hi @leek2707
So sorry that you’re struggling with joint pains - I actually stopped taking Anastrozole for the same reason but my situation is very different to yours ( max estimated 1.3 % benefit over 15 years with AI ). I stopped for the same reasons as you - joint pains / stiffness though I did also have the menopausal side effects plus a racing thumping heart when I first started taking it which was a bit scary .
It's not appropriate that someone from outside of the breast and cancer world should tell you to stop and in your position I wouldn't want to stop either.
I was helped by Ibuprofen but I know that not everyone is allowed to take it . The Diclofenac gel wasn’t bad either and some people who aren’t able to take Ibuprofen / Diclofenac orally can have it in the gel form. I’ve recently started a Glucosamine / Chondroitin / Vitamin C supplement and take Vitamin D at the same time plus a Turmeric capsule which I have with a main meal as your body needs something that is in black pepper to be able to absorb the Turmeric . I’ve noticed quite an improvement with my rotator cuff injury since I started this and my knees ( which haven’t been the same since I was on Anastrozole ) are a bit better as well. For years now I’ve taken a Magnesium supplement and that’s also good for joints .
I really must stress though that with your medical history you need to check with your Drs. particularly Cardiology before starting any supplements as they can interact with whatever else you might be on and also with your heart. I’m assuming that being on Anastrozole you’re already on Adcal or at least Vitamin D ?
I try not to take Turmeric within 12 hours of Ibuprofen as they can both have a slight anti- coagulant effect - I’'m a bleeder any way and have noticed a few little bruises on my arms lately .
For years now I have seen an Osteopath off and on and if I get an injury she is my first port of call . I’ve also benefitted from Physio exercises for specific injuries . Other people swear by acupuncture / full body massage etc. Some women have been helped by small doses of anti - depressants as well , they can desensitise the nerve endings .
@willowherb is correct that it may be possible for you to change to Exemestane which is a bit kinder to the joints according to my BCN . My friend has changed from Letrozole to Exemestane because of joint pains and stiffness and although she’s not entirely symptom free she is definitely better . It’s also true that some women have less side effects on different brands and it’s to do with the additives and preservatives that different brands use . You could make an appointment with your BCN perhaps to discuss the options which is something I recently did as I was unsure whether coming off AIs was the right thing .
I read post on another thread a few months ago which I filed away in my head in case I needed it - she also had a complex history and apparently it’s possible for your GP to set up a meeting with all your different treatment teams and come up with a plan for you . This would avoid conflicting instructions etc.
Finally well done you for continuing to work 12 hour shifts but I’m wondering if that unpleasant Dr. might actually have had a point there. Taking very strong and potentially addictive medications just so that you can continue to do something which isn’t really good for you anyway isn’t a good thing - I’m thinking of the degenerative changes in your Dexa scan . Obviously I don’t know what you do / your financial circumstances etc but with having had cancer you should be entitled to some reasonable adjustments. MacMillan have been recommended on numerous occasions for advice on employment and applying for benefits such as PIP.
I’m hoping this helps in some way and sorry that you’re in such a difficult situation
Joanne
Part of my message has gone through oddly - if you can’t read it it was just to say that I think it’s wrong for someone who isn’t a breast or Oncology specialist to tell you to stop your Anastrozole a d that in your position I would not want to either .
Joanne
I was 24 when diagnosed and I was started on Tamoxifen but swtiched to Anastrozole in Jan 2023.
The bone and joint pains were awful. I actually mentioned to my breast nurse about my hip pain and she referred me back to my oncologist who proceeded to investigate with an X-ray, bone scan, dexa bone density scan and he also did blood tests looking for inflammatory arthritis.
I was confirmed to have an old fracture in my hip (news to me) and what looked to be signs of arthritis.
The bone scan was clear for metastasis.
The bone density scan showed thinning in my hip and lower spine.
So my oncologist put me onto chewable calcium and vitamin d tablets.
I was never given anything for pain but he did tell me not to take ibuprofen long term because it can damage your liver?
However I am due to see him in Feb for a follow up!
I would definitely just bring this all up with oncology which I think you mentioned doing.
The only thing I do when my pain is flaring up is I use a microwavable wheat bag and rest it on which ever joints are painful at the time and I also changed my shoes at work to something like sketchers to support me moving and bending so much and brought a telescopic folding stool from Amazon to use when pain gets really bad so I can sit if there isnt a chair around!
I really hope you get to the bottom of your issues and find some relief. Sending well wishes! 
That’s an interesting post @KirstieF
I’m sorry you are struggling so much with your joints - I’m wondering why you’ve been changed into Anastrozole at such a young age unless it was your choice . I hope that the tests you have had will come up with something that will help you or refer you to someone else who might be able to help you to establish a safe treatment regime.
Re the Ibuprofen - yes I’m also concerned about side effects which I should possibly have highlighted in my first post but I only take it in moderation. I buy the long acting kind and take 200 - 400 mgs 4-5 days a week depending on my exercise /work routine and migraines. Occasionally I might need to take a bit more but I have 2 or more consecutive days without any.
I have found the heat patches which you stick to your clothing to be very good for neck shoulder and back pain . Footwear as you said is very important - I wear Vionic now most of the time and have a pair of their insoles which I can put into other boots and shoes.
I like the foldable stool though it’s a shame that there aren’t always chairs available . This used to be a problem in my job at one time.
Joanne. X