Hi everyone I got diagnosed in February and I’m currently getting Zoladex and taking Aromasin. Just wondering if there is anything I can take for the joint pain to go away? Thanks Jess

I have been one of those who has had really debilitating pain on Letrozole which I started taking in August 2018 - joints, muscles, tendons - the works. I keep injuring myself without knowing how. So far, my left shoulder has escaped any effects. It has also caused osteo-arthritis in my hands; something that would have probably happened 20 years down the track but I'm certainly not ready for it yet. I had bursitis in my right shoulder last year and no idea what I did to cause it. I was surprised when, at last visit, my oncologist said that seeing how badly it affected me, he didn't think I would last the first year on Letrozole. But I'm too pig-headed for my own good, I guess. For me, and I'm not saying this should be the case for anyone else, if I was going to take something and suffer side effects then I wanted to be taking the one with the best results for my sub-type (ILC) and that is Letrozole. So as long as I could endure it, that was my thinking. I am glad to say that a combination of regular pain-killers, some not so regular pain management, and a couple of goes on prednisolone when it got too bad, has seen me out the other side of the worst of the side effects. I still ache and hobble after sitting or sleeping. I am hyper-prone to injury and the arthritis in my hands has not gone away. But the constant high level pain has mostly subsided. I still need pain relief on some days but not every day.But I do want to stress to anyone reading this who may have AIs in their future, it does not affect everyone this way. I was one of the unlucky ones.

I wish I could say 'Yes, take ***' but shared experience tells us that there is very little which helps. And the drugs which do help are not the sort of things you want to take long term.Exercise gives temporary relief. Time also makes a difference--whether to the pain or our capacity to cope with/ignore it, I'm not sure. Mxx

Hi Jess. Sorry to hear you're suffering with the joint pain. It's a real bugger eh?I'm on Letrozole and have had it from the start. It does tend to wax and wane with the weather, but for me it never goes away completely. Right now in Melbourne's cold and damp weather it is particularly bad. The pain is waking me up at night and so I'm keeping up the panadol osteo (which takes the edge off the pain but no more), with something stronger every now and then.I've tried a variety of supplements, and acupuncture. I didn't find relief from these but they're worth trying because many do. Exercise neither makes it worse nor better.Apart from medications I manage my pain with heat (hot water bottles/wheat bags, toasting my ankles in front of the heater (I'd love a heat lamp), hot baths), and osteopathy. When not in Stage 4 lockdown I have it once a fortnight when I can afford it. The GP gave me a Care Plan which helps.As @Zoffiel said, we're all different. It takes some grit and determination to stay on AIs if you have trouble with them. Hang in there. K xox

Thanks @Zoffiel,Yes, the efficacy stats differ slightly in favour of Letrozole over Aromasin, and I guess Exemestane differs as well. I've started valuing every little percentage point now, far more than I did a year ago. You want to make everything you tolerate worth it. I guess I'll give Aromasin a chance. Might get lucky and feel better. Lx

Unfortunately, @Blossom1961- the Gov didn't co-ordinate their legislation with the companies that make the oil, or the pharmacies that sell it. It will be at least 6 months before it is available, they reckon - and it won't be cheap.Companies HAVE been growing it for a few years now ...... in hidden locations! ;)

Joint Pain | Online Network

Lioness25
Member
5 years ago
I’m on Tamoxifen and Zoladex and I also get joint pain. My nutritionist recommended that I take 5 milligrams each day of high strength fish oil. I find that if I take that each day and exercise regularly I hardly get any joint pain - in fact I actually feel normal again. Although when I don’t take it regularly my joint pain comes back.
This is what I take: https://www.bioceuticals.com.au/mobile/preview/UltraClean-85-Liquid/products_b.BioCeuticals
Sister
Member
5 years ago
I have been one of those who has had really debilitating pain on Letrozole which I started taking in August 2018 - joints, muscles, tendons - the works. I keep injuring myself without knowing how. So far, my left shoulder has escaped any effects. It has also caused osteo-arthritis in my hands; something that would have probably happened 20 years down the track but I'm certainly not ready for it yet. I had bursitis in my right shoulder last year and no idea what I did to cause it. I was surprised when, at last visit, my oncologist said that seeing how badly it affected me, he didn't think I would last the first year on Letrozole. But I'm too pig-headed for my own good, I guess. For me, and I'm not saying this should be the case for anyone else, if I was going to take something and suffer side effects then I wanted to be taking the one with the best results for my sub-type (ILC) and that is Letrozole. So as long as I could endure it, that was my thinking. I am glad to say that a combination of regular pain-killers, some not so regular pain management, and a couple of goes on prednisolone when it got too bad, has seen me out the other side of the worst of the side effects. I still ache and hobble after sitting or sleeping. I am hyper-prone to injury and the arthritis in my hands has not gone away. But the constant high level pain has mostly subsided. I still need pain relief on some days but not every day.

But I do want to stress to anyone reading this who may have AIs in their future, it does not affect everyone this way. I was one of the unlucky ones.
FLClover
Member
5 years ago
Pretty similar @arpie, my hands hurt too, mainly my fingers. Not as much as my feet and legs, but still painful. And this morning, when I woke up, I felt numb in the tips of my right hand fingers. That’s how it started on the Letrozole the first time, until it eventually developed into carpal tunnel 😳. So same thing seems to be repeating. I was hoping to avoid surgery for carpal tunnel.
I can’t imagine how painful it must’ve been for you to not be able to play your uke!! That’s pretty bad.
The thing is, my onco suggested switching me to Tamoxifen. I said no way, I can’t handle heavy and painful periods again, for a drug that’s least effective. So he said ok, we’ll try Arimidex. Then he goes actually no, we’ll try Exemestane. And as I said, I agreed happily thinking that was the good one. I don’t know why he changed his mind from Arim to Exem, now I wish he hadn’t. But I’m almost through the Exem, so I’ll call him soon and ask for a script for Arimidex. I don’t want this pain and more surgery 🤔😕
arpie
Member
5 years ago
Gosh, @FLClover - just like you, my legs, feet and hands took the brunt of it on both Letrozole and Exemestane (it gradually got worse & worse til at 6 months I wanted to stop.) I was put on short doses of Prednisone when it got really bad - but that is not good for your bones, so shouldn't be relied on. I couldn't even play my ukulele at one stage!! grrrr

I am MUCH better now tho, on the Arimidex! If you are in discomfort & pain, give it a go! I am much happier on it! xx
FLClover
Member
5 years ago
Hi @arpie, yes I’ve seen you write that before, but I got mixed up and thought the Exemestane was the third good one you’d tried. I was so happy when onco suggested it, until I read that it was the Arimidex that was best 😆😆🤦🏼‍♀️.
And my symptoms started pretty quickly. I would’ve been happy if I’d gotten 6 months pain free out of it.
Anyway...🤷🏼‍♀️
arpie
Member
5 years ago
Great to hear, @Dory65 ... long May it last!

Same happened to me, @FLClover ... short time on Letrozole, then took 6 months on Exemestane to reach the same level of discomfort as Letrozole. Been on Arimidex for 2.5 years now and going ok!

Take care ladies xx
FLClover
Member
5 years ago
Hey @Dory65
I was on Letrozole for a few months and had sore joints and muscles, plus carpal tunnel. About two months ago I switched to Exemestane. All my pains and aches disappeared. I got injections in my wrists, and after a few weeks they were also back to normal. Obviously, I got very happy.
Until about 2-3 weeks ago. I noticed the joint pain coming back, but this time mostly in my feet and knees. It’s also a bit painful when I stand up sometimes. So I have no idea what’s happening. I’m just hoping the carpal tunnel stays away. I might ask to switch to Arimidex if it gets worse
Dory65
Member
5 years ago
Hi friends,
re. my recent switch, after nine months on Letrozole (Femara), to Exemestane (Aromasin) - to reduce joint/bone pain.
I don't want to speak too soon, but I can report a noticeable reduction in joint stiffness and overall pain. It's not completely gone, but definitely bearable in comparison. :)
arpie
Member
5 years ago
Unfortunately, @Blossom1961- the Gov didn't co-ordinate their legislation with the companies that make the oil, or the pharmacies that sell it. It will be at least 6 months before it is available, they reckon - and it won't be cheap.

Companies HAVE been growing it for a few years now ...... in hidden locations! ;)
Blossom1961
Member
5 years ago
@arpie I understand you can now buy CBD oil over the counter without a script. HOWEVER, no-one has any because it has been illegal to grow it!
https://www.news.com.au/lifestyle/health/cbd-oil-cannabidiol-now-available-over-the-counter-in-australian-pharmacies/news-story/c5e516bdc8bd6639163d5e39453a7927