Hi Carole
I,ve been on Letrozole 10 months now and after struggling with the s/e for 4/5 months I think i,m finally seeing them lessen…but it seems to have taken forever.
Personally I will keep on taking them if they are helping but then we are all different so its a choice we make for ourselves.
If your choice is to stop it was a good idea to speak with your Dr first they may be able to prescribe a different brand, there are several choices hon.
I hope things work out for you as I can empathize with what your going through, xxxxxx
Hi
I have been on Letrozole for 2 yrs 8 months (and counting!!!). I was on Tamoxifen for 5 years and I always said that I would take whatever I was offered but I am with Carole on this one and can well understand why you feel this way and also that you might change your mind.
It is so difficult if the SEs are affecting your life and you have only just started on the drug. I was told that I was going to be on Letrozole for 3 years and my Onc has said it will be 5 years, I am going to question this next April when I see him again.
I don’t advise anyone to do this but if I have problems and it does only affect my mouth and it just gets too much I skip a pill or have a few days break, my GP did suggest I take it every other day, I didn’t want to do that. Now it could all be in my mind but it does make a difference. For 99% of the time I take it every night but I do allow myself the choice to take a break. But from reading the posts I am further down the line with how long I have been taking it and I haven’t got the same SEs as others.
Carole, I hope your GP was helpful, it does help to have a good GP.
Hazel
I have been on Letrozole for 5 years. I suffer from stiff joints and occasional joint pain in the knees. Not enough to have ever made me question taking the drug nor have I ever not taken it for a day or more. Have put on weight but hey ho.
2 years 4 months down the line… fatigue is the main problem for me and rusty joints (LOL!) I’m like the tin woman to get moving!
When I think back to diagnosis I’d do anything to get through the storm and have to remind myself this is not a bad “anything” to endure. 3 years since diagnosis… whoop whoop!
Here’s to you all - true warriors!
Hi,
I really struggled with stiffness and joint pain while on tamoxifen, mainly my feet and ankles that wouldn’t bend when i woke up. Couldn’t get down the stairs until I had moved around for a while. I also continued to keep putting weight on and burning feet/heels.
The day after I stopped the tamoxifen, the ankles went back to normal, the whole lahes, the lot stopped and I gradually became able to lose weight again (but only if eating fairly sensibly). I was told to not even bother to try losing weight while on tamoxifen but I couldn’t stop it going up and up.
I changed to femara (letrozole) and was warned that it tended to give people more aches and in particular went for the hands and fingers. I don’t have any flushes on it and no joint pain or stiffness although I am aware if I lean to one side for a long time. When they started offering cheap letrozole tablets this year I got my chemist to make sure I got the ones with the same medical code so they have exactly the same ingredients and fortunately I have stayed the same. Other posts on here have shown that the different brands of this tablet being made to reduce costs cause very different side effects. Annoyingly these side effects come from the coating and not the active part of the drug. So I think it is definitely worth asking the pharmacist to let you try other brands because I was totally different on 2 types of tamoxifen.
Mind you there are a lot worse things than side effects so I would be keen to persuade you to try others before you give up as the side effects are still better than having to go back on chemo from a recurrence.
Good luck to you all
Lily
Hi,
I’m interested to hear what brands people find better or worse? I’ve been taking letrozole for 18 months now and suffering similar side effects people mention on this thread - especially joint pains, cramps, hair thinning. My brand has just been changed to Sandoz and the side effects seem to have got much worse - really getting me down. The brand I used to be on was Novartis. Can anyone share advice or help?
Thanks,
Annette
Unfortunately because the difference in cost (Femara about £70 per box against the generic version which is about £14 per box) I was put on the generic version of Letrozole 2 months ago.
The difference is in the film coating and the 2 generic versions I have used, Rambaxy and Mylan, contain Hypromellose which Femara doesn’t contain.
My GP has said that I might be able to go back to Femara but I would have to have good reason to. My side effect is the problem with my mouth for which I have been diagnosed as having Burning Mouth Syndrome which is certainly no better but I have just been put on Nortriptyline so in time it might improve so I am not holding out much hope of going back to Femara.
I’m annoyed that we should be put in this position, but it all comes down to cost as usual.
I started on Femara and now can’t find the leaflet with the infomation about it. ie the ingredients etc could anyone post a list for me please. I was changed over to the Teva brand two boxes ago. I have put that leaflet in a “safe place”.
Many thanks X
Hi ragamuffin
I’m currently taking MA Holder Teva U K too.
Of course I have mislaid the leaflet too but it says on the box that ingredients are
2.5 mg letrazole, lactose and tartrazine aluminium lake E 103 .
magda
Hi,
I was on Novartis brand (Femara) and when it switched to generics, I asked the pharmacist to give me the same brand. They told me they picked the Sandoz brand because it has exactly the same make up and showed me a code on both boxes that signifies this.I have had no difference in change over at all and on my 2nd or 3rd box of sandoz.The leaflet inside says they are distributed by Sandoz, which has the same address as Novartis, so I guess they are a subsidiary?
Ingredients of both are 2.5mg letrozole, silica aerogel, cellulose, lactose, magnesium stearate, maize starch, sodium carboxymethyl starch, hydroxypropyl methylcellulose, polyethylene glycol, talc, totanium dioxide (E171), iron oxide yellow (E172). Yummy 
The tartrazine in the others causes some people problems.
Lily
woops,
forgot to say, when I asked the Sandoz brand are not much cheaper than the original femara.I thought they said they were about £14 cheaper than femara and that femara was about £90
Hi
I am on Femara, my chemist at the GPs did give me a different one, can’t remember what make now, But I asked if I could have the one I was use to, Femara as I was worried, ( I had been having very up & down days, & as I am having CBT therapy at the moment, I don’t know wether that had something to do with it,) they put me back on Femara.
I too sit down at 66 & get up at 90 +, once I get moving ok , sometimes get dizzy spells. Haven’t heard much if anyone suffers with depression on Fermra. 2 months back I was very very depressed, & that is not my nature, & I just couldn’t work out what was going wrong. Has anyone else suffered with depression?
Papillon x
Thanks for all the info, everyone. Yes, Papillon, depression too! Going to go back to my GP a.s.a.p. and ask about brands as my SE problems have suddenly increased hugely and am finding it hard to cope with right now. Coinciding with pharmacy changing brands of letrozole (and my other tablets for high BP) during the past few weeks. Hope this can be reversed and go back to just the ‘usual’ level of SEs - bad enough but better than this.
X
Thanks for all the info Lily200 and Magda - I haven’t noticed any differences between the Novartis and the Teva brands was just curious as to what the different coatings of the tablets were.
I have had Rheumatoid Arthritis for the past 14 years but the “Letrazole” aches and pains are in different places from the usual RA aches. I have to assume they are Letrazole side effects rather than worsening of the RA. I’ve been taking a low dose of cytotoxic meds for the past 11 years but it didn’t stop the BC creeping up on me.
No depression but as Papillon says, I too find moving helps to get from 93 back down to 63!!
I have been given the TEVA generic and have taken it for the last couple of months. I miss my familiar pink box! I’m noticing more leg aches at the moment, which seem to wake me during the night…
Here are the ingredients for each as taken from the leaflet in each box…
Novartis Femara 2.5mg Tablets
2.5mg active ingredient, Letrozole.
They also contain the inactive ingredients silica aerogel, cellulose, lactose, magnesium stearate, maize starch, sodium carboxymethyl starch, hydroxypropyl methylcellulose, polyethylene glycol, talc, titanium dioxide (E171) and iron oxide yello (E172).
TEVA 2.5mg Tablets
2.5 mg active ingrdient, Letrozole.
Other ingredients, cellulose microcrystalline, starch (maize), magnesium stearate, lactose monohydrate, silica colloidal anhydrous, sodium starch glycolate (type A) and Opadry II 85F32723 Yellow which consists of iron oxide yellow (E172), macrogol 3350, titanium dioxide (E171) talc, indigo carmine aluminium lake (E132), poly (vinyl alcohol) and tartrazine aluminium lake (E102)
Think a little googling is required to distinguish between the two
Thanks My Experience
Hi
There is an interesting article on BBC News page under health regarding a report about a US university who had questioned 686 ladies on AIs and 36% had stopped their medication due to joint pain, hot flushes etc, might be worth a quick read.
Hazel
I have definitely noticed an increase in leg pain at night since I was changed from femera to mylan and then teva. Does anybody know what is actually causing the leg pain? I can ease it a little by massage and wonder if this indicates it is muscular pain.
Wendy
I have just started my 3rd different generic Letrozole, this one is Teva so looking forward to what this little gem has in store for me!
I have had very little aches and pains, just burning mouth syndrome but I haven’t seen any other posts that anyone else has got it though dry mouth is a side effect.
I notice that Teva does not have Hypromellose in it which is not in Femara.
Hi there,
Sorry to hear you’re suffering from such nasty joint pain.
I’ve experienced this on Letrozole within the first 6 months of treatment and I started taking a daily Glucosamine tablet in the morning (vegetarian one by Higher Nature). Within 5 weeks of doing this I found the joint pains in my knees and hands had almost completely gone.
Until it kicked in I made sure i got moving early in the day with a morning walk.
I hope you find something that works for you because Letrozole is really effective.
Hang in there.