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 | BCNA Online Network

arpie
Member
5 years ago
VERY Interesting to note that Arimidex seems to have fewer side effects than the others ..... I am on it & am tolerating it much better than I did Letrozole (lasted 6 weeks) and Exemestane (lasted 6 months!)

But I AM taking the magic oil, specially at night & I swear it has taken the edge off all the aches & pains - tho I must confess, I only started it when I swapped to Arimidex ...... If you live in Canberra - you can legally grow 2 plants & you can buy a machine that turns them into the oil ..... the sooner ALL states get the same legislation - the better!

Check out my post on Medicinal Cannabis Oil a while back:

https://onlinenetwork.bcna.org.au/discussion/comment/175674#Comment_175674

and

https://onlinenetwork.bcna.org.au/discussion/19569/medicinal-cannabis-oil-amp-reduction-of-pain-improvement-in-well-being/p1
MicheleR
Member
5 years ago
@arpie, that is super helpful thanx.
arpie
Member
5 years ago
Hi @Dory65

here is a chart that notes the different names of the common tablets ...also the ’type’ of Meds that they are .. AI, SERM or ERD... and common side effects .... the ‘x’ being added by the request of members here!

The good news is that not everyone gets all the side effects! ;)
Dory65
Member
5 years ago
I filled the script and will start tomorrow. I just realised that Exemestane is the chemical name for Aromasin. So confusing.
Dory65
Member
5 years ago
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
Zoffiel
Member
5 years ago
@Dory65 from my own experience, you won't have new symptoms--it sounds like you have the majority of the shitty ones already. Those two drugs are really quite similar anyway and I found no significant difference when I did the same change. Others have reported an improvement.

You can only hope that the slight adjustment might work in your favour. The next option which you might be offered is Exemesane, which is quite different. It was the last card in my pack, and I've found it more tolerable, but whether or not it is as effective as the others, who knows. I just assume it's better than nothing.
You'll never know if you don't give it a go. Mxx
Dory65
Member
5 years ago
Hi All,
My oncologist has prescribed Aromasin to replace Letrozole, as I am experiencing arthralgia and myalgia. I haven't filled the script yet. I'm hesitant. I'm to see the oncologist in six weeks to see how I'm doing. I just don't want a whole new set of side effects. I'm on Zoladex as well, which intensifies everything. How I wish I could just stop being constantly reminded I've had BC.
kmakm
Member
5 years ago
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
iserbrown
Member
5 years ago
My Oncologist has suggested Panadol Osteo. I find when the aches are too much that it helps.
I only had one hiccup with Zoladex. I had the injection for 2 years.
Hopefully your body will adjust.
Take care and stay safe
Zoffiel
Member
5 years ago
@JessC it's certainly worth trying. Some folk have reported improvement when they drop the nightshade family out of their diets--those plants have often been linked with arthritis and inflammation. The great maxim 'everyone is different' certainty applies to AI meds. Yoga helped me more than anything else (apart from time) did. MXX