I've previously posted on the side effects (debilitating for me) which began a few months ago despite taking letrozole since August 2021. I'm now on an official break after discussion with BCN six weeks ago. Four days after stopping letrozole, the awful pain in my shoulders disappeared (couldnt even turn over in bed, pain was so bad). Twelve days later, the joint pain, muscle pain and carpal tunnel syndrome ALL cleared. These are the indications that zero oestrogen is detrimental to my health, not just the cancer. Add to these symptoms...raised cholesterol, heart issues which needed monitoring last year, hair loss, insomnia, and the mindset of "What's the point?".
The Predict tool benefit for my diagnosis is 1.3%, so I'm still undecided whether to restart letrozole. I was offered tamoxifen/anastrozole but I don't see how either of these will be any better since both remove oestrogen. The fear of a recurrence is significant, letrozole reduces the risk, however it is not preventative (something I only learned recently), the cancer may recur whether I take HT or not. The thought of continued joint/muscle pain, heart problems etc. for three more years is also a significant worry. When I was given my first prescription I asked about side effects and was told "Some women have joint pain in their hands". I appreciate not everyone has serious side effects but I feel we are not given all the facts of HT.
I researched letrozole brands, the differences in the added fillers/binders to the core content between brands is an eye opener. Since my first prescription I've been given seven different brands (whichever brand chemist had in stock), so finding a brand which "suits" is near impossible. If I decide to continue on letrozole it will be for named brands on my prescription (no chance of Femara!), up till now they've only stated "Letrozole". I may also phase the pill in slowly, I shall not take it daily and if I still suffer the same symptoms as before my break then I'm done, I will not endure another three years in pain.
Sorry for the long post.
Best wishes to all x
That was very interesting. I am on a 2week break from letrozole to see if my side effects subside. Reading your post I also realise that I have had some carpal tunnel problems,but my main problem is nightmares, followed by an itchy rash on my torso.
let’s hope things improve for us both .
This is interesting- thanks for sharing your experience. I’m on a 3 - 4 week break from Letrozole to see if my foot pain resolves. It started a few days after I started taking Letrozole and has been really painful since! It makes walking any distance a real chore :( It certainly seems a bit better already!
best wishes xx
Hi, I am also on a break from Letrozole. I just couldn’t stand the joint stiffness any longer. I felt 90. I’m shocked at how quickly my joints have recovered. In just a matter of days the stiffness is easing and I keep thinking, ‘This is how I used to feel before Letrozole!’ I will go back on it after a couple of weeks but I will give myself a break from time to time especially when I go on holiday etc.
What bothers me most is that no one can explain to me why Letrozole causes such stiffness; just that it isn’t permanent. That worries me.
JigJog My thoughts for what they are worth and its only my thoughts.....
The 'C' likes to eat oestrogen - it feeds from it....
Letrozole takes the oestrogen 'out' of our body.
Our body 'keeps' making oestrogen - the older we get I think the body makes less, this adds to why our become stiff.
We take letrozole to reduce the oestrogen in our bodies - depending on what rate/age our bodies are we continue to make oestrogen - hence why we keep taking the letrozole.....
I believe 'oestrogen' is 'our bodies lubricant' ..... like WD40 oil - it keeps all the joints moving easily and it also keeps 'other' areas lubricated (mucous membranes).
Letrozole takes the oestrogen out of our body - takes our lubricant - and 'c' needs/feeds off this.
If we stop taking letrozole, our bodies are making oestrogen - this then starts to help our joints etc.
I have heard that our bodies don't need as much letrozole daily as there is in each tablet - some have reduced to half or less tablet a day - or even taken every other day.
Eline with regards to the Femara brand - you can always talk to your Doctor. Tell your Doctor of your side effects and ask him to name Femara brand on your prescription. (they can do this). Also, I have heard that the brand Accord (Acord ?) is very, very similar ingredients if not the same as Fermara.
There are other supplements that you can take to try and help with the aches and pains. One that I've read that helps but very rarely seems discussed is the antihistamine called Loratadine - sold under the brand name Clartion (there are cheaper brands).
I'm not medical - These are just my thoughts xxx
All of the aromatase inhibitors can cause joint and muscle pain. It is from estrogen depletion but I don’t know exactly how it causes it. Our bodies like estrogen do when it is depleted we feel it.
I take Anastrazole and have muscle aches especially in my legs.
Barbara
Barbara
WhatHappened
You have written important info regarding brands. When I looked into brand ingredients, Accord is indeed the closest to Femara. It was somewhat of a shock to see just how many "extras" are in certain brands, yet other brands do not include the same. Cipla has tartrazine (E102), no other brand adds this so why on earth does Cipla think this necessary? Teva brand has polyvinyl alcohol, again no other brand adds this. I can see myself being very insistent on which brands I will/will not accept if I continue on letrozole.
Another issue is dosage...2.5mg for all, despite the fact that we come in all shapes and sizes. I'm petite, which makes me wonder if there is a correlation between body size and side effects.
For the sake of our health our opinions and feelings count!
I’ve been taking letrozole for the last 6 months, my legs ache and I need to move around often otherwise my legs stiffen up. I’m on the accord brand, I started with the Sun brand which was ok but I found accord more readily available. I hope I can stay the 5 years although there was a note from my oncologist to GP suggesting maybe 10 years. I found out the predict tool relates to life expectancy however the statistics for recurrence are worryingly high, especially if you chose to stop the aromatise inhibitors. That’s why they are prescribed. Tamoxifen works in a different way, worth reading up about that, it doesn’t stop the oestrogen being produced, I think it blocks it from attaching to the cancer in some way. They all have side effects though x
I fell down the stairs because of the stiff joints in my feet, I make sure I am limbered up before I walk down the stairs in the morning now.
The joints are bathed in synovial fluid when we move. If in pain I try to keep walking and dancing it seems to help. I put ibuprofen gel on my knee. Just rest for a day or 2 if I have a flare up. Don't let it stop you doing what you want. Our brains can be our biggest asset just need programming right.
I am reading these posts with great interest. I am on Exemstane (Aromasin), having changed from Letrozole after the initial first 6 months. I have awful pain in both my feet and ankles and walking is just unpleasant. I was attributing most of my problems to an arthritic ankle, from a poorly treated injury 20 years ago. I have seen a foot orthopedic consultant and various sections of my feet were identified as being impaired. I subsequently was given 5 corticoid injections and have had boots made by orthotics. I also have exercises from a physio and get my ankle loosened regularly by my osteopath. Nothing has really helped and I am wondering just how much is due to the lack of estrogen and how much to osteoarthritis etc. I just wish I knew what to do. I am nervy about having a break from the exemestane as what happens if when I restart the medication the stiffness etc comes back worse. I have also tried antihistamines, CBD oil, and acupuncture but nothing works. I have a worse bladder now and need to get up in the night. Getting on to my feet and weight bearing on them is painful, to say the least, and I have had the occasional accident trying to get to the loo!!!! I keep reading these threads in the hope that someone will divulge a remedy that works!! I have been on anti-estrogen medication since August 2020
Good luck to all.
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