Hello all, hope you are doing well. Just sharing a decision I’ve been thinking about with fellow Letrozole takers…
Achy neck, achy hips, achy back, painful feet and ankles, arthritis in toes, fatigue & low energy… Google tells me there is a name for this & many studies on it, AIMSS - Aromatase Inhibitor-Induced Musculoskeletal Syndrome. I wish the medical teams had more awareness of it and communicated with us more about it! (More than ‘here’s a pill for the next 5 years, okay thanks bye’).
I’ve had a couple of breaks with Letrozole since October 2023 and didn’t think it was worth trying another AI as they all have the same outcome of stopping oestrogen. But Exemestane seems to work for some people on this forum. It’s a steroidal AI, while Letrozole is non- steroidal - again, useful info to know! Maybe this helps with the inflammation & pain.
I’m going to ask for another break before asking to switch and will update here.
Hi Jackbaz! I think arthralgia is the medical word for joint pain, which would come under the AIMSS definition - “inflammation of the joints and surrounding tissues… causing joint and muscle pain”
Hi
I had the same symptoms and after 5 months was moved to Anastrozole. It’s not perfect but 90% better and with much reduced symptoms. Hope this helps
Hi, have you tried switching brands, you probably have and I’m stating the obvious!
Last month my repeat was a different one as they were out of my usual Accord brand which suits me fine. Felt awful, joint pain was terrible and also felt a real downturn in mood, (although that may have something to do with youngest just left for uni) .
Back on Accord this month and I feel better. Maybe it’s psychosomatic, no idea but I know it’s a thing for some people including myself and I have no idea why.
Best wishes and hope you feel better soon. Try to stick with it if you can.
Hi @MargotL I was on Letrozole for over a year with debilitating joint pain but also on Herceptin which can cause this as well. Once the Herceptin finished I waited 6 months changing brands etc. Eventually my team agreed I could have a break which reduced some of the symptoms. I then started Exemestane. I have pain and discomfort when getting out of bed and walk the dog. It’s painful but as the day goes by it lessens.
I hope you have some improvements when you switch.
I love your description of prescribing Letrozole. I had exactly that. Of course these drugs are important even though I gave them up after having much the same poor experience on Exemestane. But I do wish oncologists would be more frank about the downsides. I know their job is to keep us alive for as long as possible but, mostly, we have our big girl pants on when dealing with cancer, and would prefer to be given the full picture.
I’m on Exemestane (about 9 months). Yes there are hot sweats, made worse by the summer months…glad to say the last couple of weeks have been better!
As @naughty_boob mentions, I too notice stiff, achy joints getting out of bed, but it only lasts a few minutes until I’ve moved around. If I sit down for more than an hour or so, it’s the same. There was an exception a few weeks ago, I changed from Glenmark to Morningside brand and within two weeks, my fingers were nearly rigid in the mornings. Ditched those pills and went back to Glenmark, and all is back to “normal”.
I also had different brands of Tamoxifen (before Exemestane) and there was no difference. And was thinking, maybe I’m not as sensitive to certain chemicals as others, but that has proved me wrong with Exemestane!
As for the general side effects, hot flushes and joint pain. As estrogen depletes these issues effect lots of women naturally, only it is brought on quicker with these treatments and perhaps more extensive. Women without ER breast cancer have the choice of HRT to relieve these symptoms……but sadly not an option for us
Thank you @naughty_boob ! That’s helpful! The nurse from the follow up team agreed the change this morning, like you I want to have a break before starting a new one. They always seem a bit surprised that I haven’t given up on it altogether, which makes me think more people stop due to challenging side effects than we realise.
Hello @Frances55, so sorry to hear that, hope it gets better! I have seen people on the forum say that there are different ingredients used in the different brands, not even in the drug itself, just in the pillcase sometimes, that people can react badly to. I must admit I’m very bad at taking pills, so find it hard to monitor. I seem to get Accord usually from my chemist but haven’t really noticed a difference when I get different brands. I wonder sometimes whether to stop altogether and think giving Examestane a try will be the last effort!
Hi @teddy271, one hundred percent! Maybe they don’t want to put us off but a little more info would be helpful!!
The nurse this morning asked if I had been talking to the oncologist about it and asked where I’d heard about Exemestane. I said it was on this forum (no contact with an oncologist since active treatment 2 years ago)
That’s interesting @sal1, thank you! I’ll look out for Glenmark. Just looking at the forum, it seems some people do better on Exemestane with the aches & pains but it is such a lottery as we’re all so different, as well as the drugs. I know, this is like the opposite of HRT
I changed from Letrozole to Exemestane. The hot flushes got a bit worse but my joint pains, particularly my hands, improved as did vaginal atrophy/ dryness. I was starting to think that the Letrozole would kill me before the cancer. I feel a lot more human on exemestane even though a lot of the side effects are still here. And if I didn’t take it I would still have the symptoms because I have no HRT. Exemestane is definitely worth a try!!
I am like many of you on here. I have been on Letrozole since April, and the pain in my feet and hands is proving a real challenge and getting me frustrated and down. I had thought of trying a different brand ( i have Accord) but it does seem that Accord seems to be one of the better ones. I have introduced exercise,i swim twice a week, walk every day with my dogs and also do online pilates. This last week though i have start using a spikey ball and it is doing something to help. I can only assume it is the acupressure on both hands and feet that must be giving me some relief, so I thought I would share in case it helps someone else. They are only cheap to buy and worth a go!
I was on letrozole from early March to July and at the review with my oncologist I just burst into tears. I told him I wanted to persevere as I felt it was the only thing I could do that I hadn’t already been doing before the cancer. He said he didn’t want me to persevere, he wanted me to be ok on the medication. Swapped to exemastane (with 10 day break - bliss, felt normal, hot flushes went, slept like a log, still a bit stiff on rising but not painful). Was fine at first then the stiffness and soreness came back after about 4 weeks. That said, (and whether this is the cooler weather and starting 4in1 magnesium supplements idk) it seems more bearable than the letrozole was. I’m not having as much brain fog and low mood and the overheating is less. Joints still not great but I can cope. I’m seeing him next week for my DEXA scan results. I do worry about bone health so the score may affect whether I stick with AIs or risk coming off them. Wishing you luck on the E!!
Sorry to hear you are having issues with letrozole, i’ve never had bone ache, but did start with excellent bone scan. I am on Cal Mag tablets which of 100% better than the adcal GPs prescribe, and take Glucosamine, chrondroitin and MSM combo tablets, plus a vitamin D3 supplement. perhaps before any of you swop, might be worth considering upping your supplements and or looking at your diet. The only tiny side E i have suffered is 10 warm, not hot flush. and I never suffered any hot flushes whilst going through th menopause due to being on a mediterranean diet. plus getting to bed before 10 pm and rising before 6am. The canadian management - ref: A Woman’s best Medicine for Menopause - Nancy Lonsdorf. also uses Maharishi Ayurveda. Hope this helps a few, Moonsox xx
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