Letrozole Brand Affecting Pain Levels

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Hello, Sorry if you’re reading this….you’ve been on a journey you didn’t want to go on and it takes us all so so differently. My journey has taken me to a high risk group after group 3 breast cancer. I had brilliant treatment from Maidstone and Tunbridge Wells Trust. I am soo grateful to them for their skill, humour and help. Without them all I wouldn’t be here writing this today. Clear margins, no evidence of spread, but 87.5% chance of return and spread on genetic profiling so moved on to chemo and radiotherapy.
Now I am at the daily Letrozole stage with six monthly zolodronic acid treatments. Although 68 with healed trauma injuries to my left femur I do all I can to keep the return at bay and keep my bones strong. 30 mins aerobic every morning with walking, swimming etc good diet with berries, leafy greens, pulses, beans no alcohol well hydrated. So I felt really well then, about 6 weeks before Christmas I took a total nose dive. Massive pain in shoulders, arms, hands, hips, thighs. Tried to stay calm and see if it went away and was at the point of contacting my consultant saying something seems to be wrong here when the pain started to just go away. I had changed no part of my routine except the exercise was more patchy.

I suddenly realised the brand of Letrozole I was given changed from time to time. Some experimentation seems to show that if I take one brand I become almost crippled but on another I am totally normal. I have now come across another two women who have had similar experiences. 

Has anyone else had this experience? Is it a thing? I am curious as chemically it shouldn’t make a difference but I am not following up on the terrible pain I have had because it seems a no-brainer that ther is a connection? L xx

  • I have been on Letrozole for 3 years now and it’s been lots of trial and error finding a brand that causes the least side effects. Some made me crippled with pain and restricted things I could physically do. My quality of life was so affected by this little pill. The pharmacist said different brands wouldn’t make me feel differently as it’s a generic drug. So frustrating. As we all know the research is up to us sadly we have to advocate for ourselves. My prescriptions are marked to only dispense this particular brand but it’s not without issues and quite often involves me phoning different pharmacies to check availability. 
    Definitely log which brands you are ok with and ask your GP to request these in the future.

  • Bless you- thank you so much for replying. It so helps to know other people’s experiences. I’m not going potty on top of everything else. You’re advice will be acted on and I will start being more pro-active in tracking down the brand that suits me. L xx

  • You are so very welcome. 
    Take care x

  • Hey! I have been on letrozole for 6 years….and have found some brands cause so much more pain. Once I had taken 3 days worth and went to the pharmacy to change to ANYTHING else! Accord brand is the one I have settled with. Tried to work through ingredients in different brands to work out why….but too complicated! I have a note on my prescription asking for Accord if at all possible and they keep a stock for me!

    Good luck but definitely worth trying different brands and chatting to your pharmacist.

    GGx
  • I’m on accord aswell and will not accept any other brand, I read up about it 2 years ago when I started and this brand was what everyone was saying that was the best, so I was given it and I have stuck with it now, they say it doesn’t make a difference but I’m not taking that chance I’m settled on it and my body has now adjusted well to it after a couple of hard months with bone pain x