Letrazole side effects and the brand Femara

[Pawsnjaws]

Hi I have been a member of HU previously for my thyroid, but since then I have had cancer 3 times. My question is specifically about Letrazole. I have been taking it since Feb 2019, initially I was ok, but as time passed I developed terrible joint and bone pains, at time I couldn't put my left foot on the ground as it felt as though I had smashed my heel with a hammer. After a year of wrongful diagnosis about my foot and constant whining from me, my Onc agreed for me to come off Letrazole for 2 weeks, within the first dew days I was like a spring chicken, it proved to me it was the cause of so much discomfort. My friend brought me some Femara from Spain and I have not experienced any pain from that ( 6 months) the trouble is my Doctor and Pharmacy wont prescribe it or dispense it. The brand is £90 per month where generic is £3.50 I do believe most patients are ok with various generic versions, but I have tried them all. I would like to ask if anyone has any experience of this or advice. Thanks

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Sandra, This is *so* interesting, I have a friend who changed treatment (to anastrozole, which I understand is a close cousin...) because of similar issues! I will let her know about your situation...This highlights the value of this community but leaves me wishing there were some way to get the word out, more broadly!!!

Thanks, as always, for your wisdom!

Lynn

[Pawsnjaws]

Hi Sandra & LynnYes, the frozen hand, I had forgotten about that bit too, my thumb would lock in place also and it was difficult to actually grip anything. The generic brand caused me so much discomfort that if that is all that is available to me I would actually stop taking Letrazole.. it sounds absolutely ridiculous that this would be a consideration given the thought of the disease its holding back! I have written to my Oncologist and hoping he will support my claim to my GP who are currently protecting their budget.

You are quite correct in the fact that ALL of the Letrazole brands contain 2.5.mg of Latrazole but the baking agents and coating are different and there lies the culprit.

I know of many patients who are fine on the generics, but I am not and I feel out on an island shouting for help into a gale force wind. Fingers crossed

Separately Lynn, you are quite right, I think this is kept quiet due to the cost of the medication £90 as opposed to £3 but the unfairness is that the patients who are suffering aren't give the option of Femara, its just kept quiet like a dirty little secret.

[Valisa]

Good Morning Sandra,The letrozole that I take is ACH-Letrozole 2.5 mg, the box indicates it is from Accord Healthcare in QC. I have been taking this together with Ibrance and monthly Xgeva injections since Dec. 2018 when I was diagnosed de nova MBC. For the most part I am doing okay and have responded well to this treatment. I do suffer from a lot of aches and pains, it is especially bad when I get up in the morning, after I sitting, and it is worse in the evenings. I am active regularly, walking 3-6 km daily.

After reading this thread I am beginning to wonder if the brand of Letrozole may be the cause. I am in Ontario and have a good drug plan that should cover any brand that is prescribed. Just wondering if discussing this with my onc at my next appointment would be helpful. Hopefully they can prescribe the Femara brand.

I don’t post often but I so appreciate all the wisdom and shared experiences of everyone on this community. Thank you for sharing. 🙏🤗

Lisa

[PJBinMI]

I was on Letrozole for nearly five years and tolerated it, but I had been taking Celebrex for pre-cancer arthritis and when I had to stop it for several days a few times for various tests and procedures, I found out how much joint pain I had without it. It might be worth while for you to see if your onc or your primary care doctor would prescribe Celebrex for you to see if it would make a difference. I take 200 mg every morning. I see that LynnFish mentions switching to anastrozole as a potential alternative.....I was going to mention that, too. Letrozole and Anastrozole are both non-steroidal aromatase inhibitors and it's my impression that oncs tend to prescribe one or the other. Anastrozole has been around longer than Letrozole. But they are quite alot alike and I have heard of women having rough side effects to one or the other, switching and getting alot of relief from the side effects. I don't know why oncs don't do this automatically for those with harsh side effects!

[Timtam56]

Hello all. I had lost this post and found it again just now.m following with bated breath as I have had so many of the above symptoms. Etc.

I am the “Friend” Lynn speaks of Sandra!

I have had and do have so many side effects. I have been unsure as to whether they are actually illnesses of their ow accord, or in fact side effect of Letrozole or Ibrance.

So last year, just before COVID hit, both my thumbs started to gets really sore. Then they both locked up. It was really really scary. I don’t know which Letrozole tabs I was on, but at first my Oncologist didn't really accept what my GP was suggesting. That it might be that medication that was causing it.

Cut this story short. Steroid injections and then changing to Anastrozole as Lynn said,.... and my thumbs are much better. But I do think it left its mark on my ability, and the soreness still lingers. Reading your posts makes me really angry at the research that is not done on these side effects. Or at least not taken seriously enough for all of us. When I think of things like the coating that is used in the differing brands. 🤨

But I guess the fact that it’s keeping us alive has to also be taken into account.

[Timtam56]

Oh. And another thing..... Does anyone on Ibrance, Letrozole/Anastrosole, and Denocumab have any skin problems? I have this extensive, chronic skin rash. Not itchy. All over my body. I’ve recently had a punch biopsy and my GP thinks it may be medication related.

I also have terrible pealing and cracking of the tips of my thumbs. I’m constantly biting the skin off and it hurts like anything. Dry and scratchy.