Hello,
I completed my first month on Letrozole and feel broken as I have pain everywhere : in my wrists, shoulders, lower back, leg. Can you get used to ? Is swiching brand good and if so, what is the best brand? I also started a very low dosage of Sertraline as my anxiety is through the roof.
It sounds like you’re having a tough time @emilie
My experience was that the side effects on Letrazole improved after around 8-9 months, either that or I just got used to them. I didn’t have joint pains like you’re describing, although I did find that my knees were incredibly stiff in the mornings as well as my hips, when I got up after sitting for a while.
I didn’t find any difference with the different brands although I know lots of people do. I think it is very individual and what works for one person doesn’t necessarily work for the next person.
I went on a CBT course run by Maggie’s (Leeds) which was very helpful. The course was for managing hot flushes but the same principles would apply for any side effects you are experiencing. It might be worth getting in touch with your local Maggie’s to see if they can offer any support, my experience of them has been brilliant.
Hang in there. It’s early days and I remember how overwhelming all the side effects felt to start with. That said, if they persist please speak to your breast care team. They will want to support you to stay on the drugs to help reduce your risk of recurrence.
1 Like
Thanks a lot for the advice and I think the accumulation of chemo, surgery and stress on top of the side effects of Letrozole which is overwhelming. I will give it a bit more time.
1 Like
I managed 18 months on Letrozole, and like many people the joint stiffness kicked in after 3 or 4 months but then it gradually eased off a bit, so it’s really worth persevering for a while, because you might be OK.
For me though, around 6 months ago it started ramping up again. Knees were very stiff and muscles sore. I’d go to a yoga class and immediately afterwards my legs would feel pretty normal, but by the time I had driven 20 minutes home it would be back to square one with legs that felt like lead pipes! Eventually all the recommended weigh-bearing exercise I was doing to counteract the effects gave me a stress fracture of my knee. As a result I was advised to take a month break from Letrozole while the the fracture started to heal (bliss - the generalised muscle pain disappeared within 3 days) and then I started on Exemestane. I’ve been on that for 2 months now and the muscle soreness has not returned. The only side effects I’m getting now a few more hot flushes (but I’ve figured out the some of the triggers) and I have to be more careful with my diet than before to avoid weight gain. Unless things change I think this might be doable for the next three and a half years. There are options if you find you can’t deal with Letrozole in the long term.
1 Like
Many thanks for sharing. I will persevere and see. I hope my wrist will get bettr as I have never suffered before starting on Letrozole. I have been told that the body will get used after 3 months and by moving your body more. Let’s wait and see.
2 Likes
I’ve found the same with Exemestane @sopranosam, more hot flushes and some immediate weight gain, although I’m 3 months in now and I think the hot flushes are settling down a bit. I’m getting some joint and muscle stiffness but it’s not too bad and pretty similar to Letrazole for me. I think everyone just reacts differently to the different drugs.
How are you getting on @emilie are things settling down at all?
Hello,
My joint pains have worsened. I now have knee pains, and I struggle every morning going downstairs. I have been on 2.5 months on Letrozole and next week, I will ask my oncologist to switch to Exemestane. I am also considering taking Duloxetine as it is supposed to help with joint pain. I will try Exemestane. I am feeling very low and the idea of taking it for 5 years is depressing. I am also hypersensitive, probably neurodiverse and with menopause I have found out that I had ADHD and it got worse.
I survive, but each day is a fight. I also might increase my Sertraline as i am on 1/2 tablet, 25 mg as a trial. I can no longer work, and doing cleaning at home has become so hard. I guess I have to be grateful to be alive and will carry on taking one day at a time.
1 Like
That sounds tough. Hang in there and I hope your conversation with the consultant goes well
1 Like