I have been advised to take a 6 week break from letrozole as I had a pre existing condition that has got worse in the last 10 months since starting on letrozole just to see if it is a side effect. After the 6 weeks is up and I recommence taking it am I going to be back to square one with the side effects that I had when I first started taking it ie joint pain, flushes, insomnia?
Hi linda3
I’ve been on letrozole since May 2023. I have underlying joint issues plus hypermobility. I took a 6 week break in May last year to see if it was the letrozole that was causing pain, insomnia etc. I had a good 4 weeks pain free meaning it was the letrozole side effects. For the first couple of months back on I had very little extra pain however it then came back with this time added muscular/tendon pain. It got so bad I was sent for MRI scan on hips.
I now struggle to stand for long because of pain in hips but most of my pain is at night when obviously extra pressure is put on muscles etc.
I’ve been prescribed Nortriptyline and Nefopam which temper the pain a bit. I also do pilates and other classes twice a week, whether I’m in pain or not. It won’t beat me.
It won’t happen to everyone though and I’m maybe one of the unlucky ones. I’ll keep my fingers crossed for you. Hopefully you’ll be ok. Sending hugs x
I discovered recently that half the people who take letrozole get arthritis as a side effect! You would never know this if you read the leaflet produced by breast cancer now which is light on statistics.
I have had worsening pain after three years on it and the only reason I keep going is I rang my oncologist and she said over the phone that I have a bad prognosis !!
That disconcerted me a lot but would I rather hobble around for longer with high cholesterol and blood pressure both of which I have since taking letrozole or just have a shorter life but a more merry one?
So far I have continued to take everything including blood lowering and cholesterol lowering drugs. I have upped my gardening and walking the dog significantly so I am constantly distracted from thinking about anything except my tasks for the day.
To me this is the only way I can keep going. I also have toothache as I had zoledronic acid this week (last Monday) and it may have done something to one of my teeth. Back to the dentist asap.
I have no heating either as some part of our heating and hot water system is on the blink. These issues stop me having time to be sick and luckily I can afford any repairs I may need. I shall spit venom though as I don’t want to pay for boring but necessary work. I would rather Party Party Party! Fat chance sadly luv Seagulls
I was thinking about side effects the other day . How do we report them? There must be more women have them than the leaflets say .
Hi linda3,
Thank you for posting and asking if the side effects from letrozole you have experienced will begin again after a 6 week break.
Taking a break in treatment is a way of determining whether the worsening of your existing condition is due to letrozole or another cause. If your side effects improve whilst on the break, it would indicate that the letrozole is responsible for the symptoms. In this situation your treatment team may talk to you about switching to a different type of hormone therapy to see if it suits you better.
If your side effects do not improve on the break, it is likely that they are not caused by the letrozole and your treatment team will discuss whether to restart letrozole or another hormone therapy. They can also advise you on alternative strategies to manage joint pain, hot flushes and insomnia.
It is difficult to know whether your side effects will return until you restart treatment. For some people such as @Nijan and @Seagulls the side effects can get worse but for others they will improve. It is always important to talk to your breast care nurse or treatment team about any side effects of treatment that are impacting on your quality of life.
@klf asks how you can report side effects, and this can be done using the yellow card reporting site.
We offer a range of free supportive services for anyone who has had a diagnosis of breast cancer which you may be interested in. They include face to face and online courses and events. Our Moving Forward services and Someone Like Me service may be particularly helpful for you.
For more details about all of these services, please see the information on the link, or call our free helpline.
Our usual opening hours are Monday to Friday 9am - 4pm and 9am -1pm on Saturday.
Out of hours you can leave a message and we will call you back when we next open.
Best wishes
Katy
Breast Care Nurse
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