Hi ladies I’m at that point this afternoon where I don’t know whether to be angry or cry the latter I think I am struggling with letrozole and joint pain especially shoulder at the moment I started on cipla brand which was horrible currently I’m on accord which is no better my usual pharmacist was away so I saw another one who in a nutshell said they are all the same doesn’t make any difference which brand it’s not the brand it’s the actual letrozole that’s causing the problems I don’t agree because some ladies have changed brands and been better my next question to him was the pure brand femera he basically said unless you are allergic to any of the other brands then it is highly unlikely it will be prescribed because of the cost unless I pay for them myself any suggestions ladies I’m so fed up love Judi.
I think you will find loads of threads with the same complaint.
I started on accord …settled for a few months on it then got switched to Cipra for months …then two weeks ago went back on accord.there is a difference with se …
I spoke to boots where I get mine …they said they buy in bulk for the best price and so cannot guarantee any brand unless doctor authorised it.
Basically …I get more hair loss on Cipra but more hot flushes on Accord …in a nutshell.
Hi Judy,
I changed my Letrozole a month ago from cipla to actavis, I think I feel a bit better.
I read somewhere , maybe on the forum that it is one of the most similar to femara.
I was on cipla for a year so feel I gave it a good try. I also read recently that somebody felt that cipla wasn’t so good for the hair.
I don’t think my joints ache so much and don’t feel so stiff.
All the best
xx
I started Letrozole Teva only 5 DAYS ago and the muscle pain is terrible. I am also nauseous and constipated. I hope this subsides. I started Cod Liver Oil tabs. Any other suggestions.
Hello happy boobs
I wonder if I should take it last thing at night too and sleep through the side effects …always have taken it morning’s .
I always take cod liver oil every morning …a few months ago I went away and forgot them …gosh didn’t my joints creak just missing a few days .I soon got back on them and the creaky joints got better.
What brand of letrozole are you on ? I find a real difference in them.
I’m 64 and retired too …don’t know how I would cope with working and being out of the house at 7.30am like I used to for 26 years !! Now it’s two coffees in pjs before I think about the day ahead.
Carolyn xxx
Yes am on Adcal …love them as they are lemon flavour and they stop constipation too.
I’m also on denosumab bone injections as I have secondary bone Mets.
Hoping my chemist will get my accord brand back this month …had Cipra for two months and hate that brand. I think the younger ladies get worst stiff joints than us as the pill stops oestrogen and the younger they are the more effects .
Carolyn xxx
I’ve been on cipla now for a month and only has a little joint pain to start, my problem is insommnia, does anyone else have this and is there a better brand of letrozole for insommnia.
I’m so tired, I go back to work next week and honestly thinking of stopping taking them.
Michelle xxx
Hello all I’m thinking I may need to change my brand of Letrazole too. I started late September on ones my oncologist gave me at the hospital, I think they were Gilcrest. I am 2 weeks into Accord given by my go and the difference is astounding! The pain in my ankles, wrist, hands and knees wakes me up at three am and is getting worse. Sometimes so bad I wake up with tears in my eyes. I have had to take pain killers. Sleep is always broken due to early waking and I get up for work at six an hour after I’ve dozed off again! I find my self really flat in mood too since starting this brand and amwondering if its just a settling in thing or whether I should try my go for a change, back to ones I’ve started on. Thank you ladies xx (Double mastectomy May, oopherectomy end August.)
Would it be possible to post a link to your research. This site has been so useful been on Cipla for two months a feel 40 years older than I am. Cannot think straight and trying to do a degree. I now know what the problem is, also explains severe joint pain. I will now be having words with GP Acatavis or Accord.
If they are really all the same how can there possibly justify the extra cost of Femera.
I am just coming to the end of 2 months of Femara that I’ve trialed to see if there is a difference. I am certainly less stiff still have the trigger thumbs but the feet are now ok just the hands but much better. Next month I have a packet of Letrozole made by Sandoz which is a subsidiary of Novartis (Femara) so it is a generic version but apparently identical to Femara so will give that a go . I have had lots of trouble finding a pharmacy that had the Sandoz brand even a phone call to Customer services at Sandoz to check if there was a manufacturing problem there isn’t. Will update all in a month.
Femara is the original Letrozole but when the licence expires it opens up all drug companies to make a generic brand I’ve spent all my professional life telling patients that all the generic brands are the same as the original but now no way!!! Generic brands are all much cheaper but each drug company uses different fillers etc to bulk the basic Letrozole. It’s these that cause the problems.a month of Femara cost me £84 on a private prescription the generics are less than £10 (not eaxactly sure) so NHS makes GPs prescribe generically due to cost. We can only work our way through them all and decide what’s best for us.
There is a very good post on here under the same thread from a member who did all the research into the brands and the fillers, can’t remember who though .
Two days ago I bought (from Amazon) triple strength Glucosamine that has added turmeric and boswellia etc in it. After two days I can move my hands again and managed to get out of bed this morning without doing the penguin waddle of pain across the bedroom floor - didn’t even think about it. Didn’t wake up in the night with the pain of trying to roll over either. I’m so happy. I also take a cod liver oil supplement. Thought I was in for 5 years of hell but now perhaps not as bad as I feared. I’ll still try to get doctor to prescribe the various brands of Letrozole, just in case. I’m on the Teva brand at the moment. Why don’t they colour the tabs with turmeric instead of tartrazine I wonder?
Hi ladies
It’s interesting how we all are so different but are all experiencing the joint pain. I am interested in those who have trigger thumb/finger and the progression of it. Both my thumbs are affected ok with splint on but have had them since November wondering what to do. GP wouldn’t inject with cortisone as thumbs more difficult than fingers. At comments appreciated know it’s Letrozole related as problems only started 6/12 into treatment.
Hi everyone. It’s been really interesting to read this thread. I started letrozole last week, the accord brand. At the moment I’m fine, but obviously it’s very early days. All the very best to you all. And many thanks, it’s great to share with others who know exactly what I am going through xx
Hi everyone. I’m new to this site but I’ve been taking femara now for the past 12 weeks and the only symptoms I have are increased hot flushes and night sweats but I suffered with these before I started taking the tablet. I’m afraid I’ve never heard of trigger thumb. Would someone be kind enough to explain what it is please.
My first post though I have read this and other posts elsewhere about the effect of different brands of letrozole on side effects experienced. It is rather long. I would love it if some of you could bear with me.
I started taking anastrozole to reduce the risk of my breast cancer returning in April 2017. Felt pretty grotty (technical term!) at first, but was also recovering from chemotherapy and still undergoing radiotherapy so it was understandable. By September/October/November 2017 I started to feel something like my old self, some side effects but manageable. However mid-December I was given the Teva brand of anastrozole and almost immediately things changed (extreme pain was the worst side effect, at that point I was unaware that brands could make a difference). Contacted my breast care nurses in January because I didn’t understand what had happened to me, and also changed back to a brand I had been using without so many issues (shout out to my local Tesco pharmacy manager who was brilliant). Unfortunately the side effects not only did not get better, but continued to get worse (so it wasn’t the Teva?). There followed a lot of tests (oncologist - ‘everyone always blames their medication’ - despite me having researched my side effects quite extensively). At the end of March I started a 4-week break from anastrozole and the side effects mostly disappeared within 2 days. Appointment with my oncologist at the end of April and she prescribed letrozole (‘but it’s a sibling drug so the side effects are likely to be the same, don’t bother coming back to see me if leztrozole has the same effect, see your GP and she can prescibe something else but it won’t be as good’). Went through the ‘grot’ stage again but by June was starting to feel better. Then I was issued with the Teva brand of letrozole (I was concerned but had convinced myself that Teva wasn’t to blame with the anastrozole because my side effects didn’t get better when I stopped taking it). Guess what, within days the side effects were back with a vengeance.
I have managed the situation myself this time. Stopped taking letrozole (side effects more or less disappeared after 2 days), whilst I organised a GP to issue a prescription requesting only Sandoz or Accord brands (don’t think she was aware of these issues, and the two brands were not available on her drop-down list of brands, so helped her complete a free-format field to enable her to request them). Started letrozole again after a break of 7 days and (I am touching wood) so far I am ok.
I am so sorry for the long post. I am so angry that I have wasted most of the year getting to this point. I have looked for information about brand issues in the booklets I received about anastrozole and letrozole - nothing. I have looked on the bona-fide UK cancer websites - nothing. So how do women find out about these issues if they don’t ‘lurk’ on forums like us? I think information should be published so that everyone is aware. I don’t really understand what has happened to me, would love a discussion with a scientist to explain it all (I do not understand why I do not seem to tolerate Teva but others do). I really want to do something to help women everywhere. We deserve as good a life as we can achieve after what we’ve been through. I will be writing to my oncologist, breast care nurses and GP but that may not help women everywhere. Looking for thoughts please. I am thinking of contacting the big organisations, but who else?
Hi I have been on the same brand of anastrozole since last December. This time u went to the pharmacy and they gave me a different brand. I usually have a pink packet but there were yellow. Now because I had read about problems changing brands I asked them to give me what I usually have. They can’t get those anymore!!! I refused the ones they gave me and went to another pharmacy and they gave me 2 pink packs. The chemist said he will try to get me the same ones each time but it was a good idea to try a different type to see if they are ok, that way you have a choice if one is not available!! I’m scared of changing and the side effects as up to now I have been fine on the pink packs.??
Sheila I sympathise with your situation as I spent most of last autumn and winter working my way through different brands. The problem is we are all so different and we all react differently so what is good for one is not necessarily the answer for someone else. I spent all my working life (Specialist Nurse) telling people all the generics were the same and now I know that’s not true. I think it is the fillers etc that affect us as the Letrozole is the same in whatever. Both my Oncologist and GP were excellent and encouraged me to work my way through all the brands of Letrizole and when I found the Femara the best my GP put my case before our local Medicine Management committee to get approval as it’s aporox £96 per month compared to £30-£40 for the generics. As with a lot of things in medicine it is trial and error but I agree that all the medical and nursing staff should make all patients aware. I even got chatting with my Practice nurse who had taken an AI with the same issues as myself and had done exactly the same.
Hope your search for the best one (least side effects) will be fruitful it is worth it as it’s a 5-10 year stretch at least.