I am 3 yrs into Letrozole and I had the same issues as you. I spent the first months going from brand to brand some better some I crawled upstairs on my hands and knees. I have a very supportive GP who believed me and understood my issues. I eventually had Femara the original version on a private prescription for 2months to see the difference, it really was like magic yes still some joint pains but such improvement. In our area my GP had to request from the local Medicine Management Committee if I could have Femara on the NHS which they agreed. So try all the different generic brands keep a list and symptoms with each brand if you find one that suits stick to it and ask for that brand all the time. Femara is much more expensive so persevere and don’t give up as we are on this a long time and it’s really important not to stop without a fight. Talk to your GP and get them onside. I have been a nurse for 40 years and always told patients the generic versions were the same not anymore the fillers they use can cause the side effects. So good luck and treat this as in a logical process of elimination of brands.
Hello - Ive been on Letrozole since May. I started off with one brand, it was white. My pharmacists say they can’t tell
what the generic was. Then I switched to Teva. I had increasing back, hip, and knee pain. I picked up a script by Breckenridge. It is dark yellow. I had hives and only took it three days. I went back on Teva. I just went to am orthopedic for extreme knee pain and swelling. I can barely walk up stairs. I think it is this medication. Are there any generics that have lower sides? What is causing the back, joint, hip, and now knee pain? I’m also more depressed than usual. Thanks in advance.
I have been looking at the ingredients of Teva and Accord letrozole as the ones my local pharmacies seem to have commonly. I want to choose one which will has less side effects, so decided to look at their ingredients. The ingredients are the same, except Teva has two extra E numbers Accord doesnt have. Tartrazine E102 yellow colouring, the side effects include anxiety, migraine, depression, blurred vision, itching, general weakness, hot sensations, a feeling of suffocation, purple skin patches, and sleep disturbances. It also has E132 which can raise blood pressure slightly.
Accord only uses Iron yellow oxide E172, which doesnt seem to have any stated side effects. It also has Hypromellose E464, used as a binder or slow releasing agent, and also used in opthalmic solutions to increase eye lubrication. Teva doesnt have hypromellose.
So out of those two, i would prefer to take accord, and not have the added side effects of the 2 extra E numbers, especially the tartrazine E102.
Femara has the same ingredients as Accord, other than having a higher macrogol content of 800, to Accords 400. Macrogol is used for constipation.
It was interesting comparing the ingredients.
I5 seems lot of people like accord and I agree with the coating I've managed to adjust to glem mark now at first was horrible feel like I shouldn't jinx myself like xxxx
Yes it is annoying when you think you’ve found the right one for you and then things change. If things don’t improve , my next step will be to try Fenara , seems to be the least problematic but also exoensive. I will consider a private prescription to try it out if I can’t get it from the gp.
i agree with you, it’s the cheap fillers and coatings that cause the problems rather than the letrozole itself.
Interesting to read that you've had issues too and sorry you were experiencing more side effects. Perhaps a different manufacturer uses another coating on the tablets. I'm thinking of asking my GP to prescribe 4 months worth instead of 2 so that when I can get hold of Accord brand I don't have the same problem in another 2 months. It's bad enough having to be on these for 10 years. All the best.
I have had the same issues- I too have Accord specified on my prescription. Since my last batch of Accord ( which I had to source from different pharnacy) I have started having side effects again, painful joints, irritability. I found one strip of a previous batch which I am now taking and feel better. I woder whether there is a change in manufacturer. Will see what happens when I have to go back to the new batch in a week or so
I asked my GP to specificy' Accord brand only' on my Letrozole prescription, but last November my pharmacy couldn't supply it and I was left ringing around different pharmacies when I was down to my last couple of tablets! I thought they were supposed to order it in for my especially but they said there was a problem with the supplier. Has anyone else experienced this? I had to travel some way to a Boots pharmacy who fortunately had some.
I have been taking letrozole for over 2 years and found that Accord brand is the one that I can tolerate. Other brands give me various side effects and my gp specifies Accord on my prescription. I have been told a couple of times by the pharmacist that Accord brand are being discontinued but have always managed to get them. When I opened my last batch I thought the colour was slightly different ( the different brands vary very slightly in colour) but didn’t think anything more of it. Having taken these for 4 weeks, I am suffering with joint pains and am feeling low and irritable ( effects I have had in the past with other brands). I put this down to a virus at first as there are so many around but I have been wondering if Accord have changed their supplier.
I was on accord when I first was diagnosed and found it very tolerable and then they switched me over to glen mark and boy I noticed difference could barely bend knees as joints painful however now after month or two this settled xxx
Have been on the Accord brand of letrozole since September 2019, have managed ok with the side effects. Today I picked up my repeat prescription which is for 2 months and when I got home found 1 box was Accord the other was Crescent Pharma Ltd. I've had a quick scroll through this discussion and don't seem to see any one else mention them. I've maybe missed it but has anyone else been prescribed this make?
Going to try them first to see if I feel any different compared to when I take the Accord.
Love to all xx
I am now 3 yrs since starting Letrozole and probably 2 years since changing to Femara which I continue to take.
my words of wisdom to all are to keep a chart of the different brands and the side effects associated with each. I know I have an excellent GP and Oncologist who understood and approved of my requests for different brands and listened and I am happy with the Femara far and away the better for side effects than all the others. Advice don’t be put off by being told they are all the same there not.
also side effects can disappear even after months within my first year of starting the Letrozole I had trigger thumb in both thumbs I bough thumb splints online and wore them for nearly a year and then they improved and for the last year they are back to normal how’s goodness knows. Anyway Goid luck ladies with your search for the best brand.
Did you ever get all the formulations . I switched quickly from Teva to Accord which was much better. Last six months I’m in a lot more pain . I just called Accord and asked if they changed their formulation and she said they had not. What brand are you currently using .
I've been taking Femara for a little over 5 months and have yet to experience any side effects whatsoever. I'd been warned about hot flashes, night sweats, joint pain, muscle pain, and so far nothing. So happy I found "FEM365PRG" ❤️❤️ in Google and got Femara.
Did you manage to complete your spreadsheet re Letrezole Brands different ingredients ?
Used Accord for 12 months ok now given Glenmark bit worried to change now
I’m having real trouble getting the Teva brand and the Accord gives me pain in joints. Anyone want to swap packs with me?
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.
Hi everyone......have been taking letrozole for about 12 weeks now and have suddenly had some really bad reaction to it.....a couple of friends had mentioned it could be the brand I've been given and after reading all the posts on here i an more or less convinced this is my problem, been to doctors rwice and they are talking of changind it....not sure now whether that would be a good idea.......any advice please, woke in agony this morning and i don't do it often but cried today...
Good to hear from everyone. I am aware that different brands appear to affect people differently. For me the Teva brand of letrozole (and possibly anastrozole too) is to be avoided at all costs, whereas I seem able to tolerate the Accord and Sandoz brands (Sandoz is a division of Novartis who originally developed Femara/letrozole). My presciption now specifies these 2 brands and so the pharmacy is obliged to order them in for me if they don't have any.
I have also started a spreadsheet to compare ingredients of the different brands, to see if I can identify what in Teva causes the issues for me (it probably isn't that simple!).
Gailey, I envy you your supportive health professionals. It does concern me how variable the support is. I know of a lady who has stopped taking her AI altogether because of the pain it was causing, and I do wonder whether the side effects could have been reduced by brand experimentation
I would imagine a couple of weeks before the oestrogen is fully suppressed,to be honest I don’t know for sure.
Certainly the lack of oestrogen can cause a lot of the muscle aches as well as hot flushes and the good old vaginal dryness!! It can also affect the joints. I was post menapausal when I started the Femara and I’ve noticed the hypo oestragenic side effects over the last 18/12.
Many thanks Chick1, that's very helpful.
The link worked perfectly - I'll enjoy reading the paper with a cup of tea!
Have a lovely evening.
Gailey, thank you for this valuable advice.
Do you know roughly how long it is likely to take for a woman to lose the oestrogen already in her body, after starting to take an AI?
I have now been on Anastrozole for four weeks. A couple of weeks ago I had a review meeting with the registrar oncologist and asked her this question. She suggested, hesitantly, it would take only a few weeks. I didn't query this but I think she was guessing. Whilst being pleasant, she strikes me as being very inexperienced and probably hasn't been a registrar very long. My GP agreed three weeks was likely to be unrealistic, and said he thought it could be several months.
Am I right in thinking that joint and muscle pains are more likely to set in when oestrogen levels are extremely low/near enough nil?
Thanks in advance for any information.
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?
Lucky50, glad to hear that your s/e are minimal - it should stay that way as I think most of us have found any s/e do start pretty quickly. Would just remind you to keep an eye on what brand of tablet you are taking as different brands can cause different s/e. And to anyone else just starting on the tabs - don't panic and think you'll get lots of s/e - most people don't.
Oh the joys of trigger thumb - you would know it if you got it! Can be in any finger though. Starts with thumb feeling a little tricky to bend, gradually gets worse until thumb actually clicks as it bends and is excruciatingly painful as it tries to straighten up - and sometimes it can stay bent. It's the tendons jumping out of the sheath they are in - also a lump might occur at the base of the thumb, which is a swollen tendon.
There, that's an extremely technical and medically sound synopsis - and someone else can tell me that it's all wrong!!! xxx
Hello ladies! I haven’t posted for ages but am dipping in again. I have been on Anastrazole for two years now (time flies!). I have hot flushes every so often - especially when I’m a bit stressed. Annoying. I have lots of aches and pains - hips, back, knees, ankles, and feet. I too hobble out of bed and have to hang on to bannister to get down stairs. Also much less energy now. Interested to read about PeaksandDales glucosamine - am going to look for it on Amazon - can you tell me what it’s called please. Good health (!) to us all! Debbie xx
Hello Gailey, I've had trigger thumb twice, although was on anastrozole and now exemestane. Dec2016 (after 1 1/2 years) trigger thumb left hand, doc able to give me a corticosteriod injection, which worked well. In Dec2017 same again, but this time I didn't go to docs (don't really know why), but looked up exercises on youtube. It took a lot longer to go, about 2 months, but ok now. But ..... both my wrists are now peculiar and were almost unusable with pain whenever I moved them a few weeks ago. Again did some youtube research and found some exercises. They are better, but still at random times completely take my breath away with pain. Very odd. I am convinced it is the tablets we have to take, as didn't have anything like that before! Hope you find some relief soon as I know it's pretty depressing having ongoing pain.xxx
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 PeaksandDales, that’s brilliant! I take something similar but without turmeric as I get that from other sources, I take fish oils too. I don’t get any joint pains as such and even my trigger finger has settled down but I do get what I believe is Costochondritis in my ribs from time to time. I agree, why don’t they??? But then I think that about several things, calcium carbonate is something I can’t understand either. Kxx
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?
I was told that Dr. Reddy's is no longer being manufactured. When I went to collect my prescription on Friday the pharmacist was issuing a brand called Glen something? but I don't really want to keep trying different brands so I asked for Accord again. I was a bit emotional on Accord which was the first brand that the hospital prescribed but I am wondering if it was all just hitting me about what I had been through with the diagnosis and surgery and waiting for results of Onco type test so am giving it another go and see how it goes.
I had to have a Dexa scan the other week and have found out that I have Osteopenia so have been prescribed with calcium/vitamin D tablets which are making me constipated so will have to make an appointment with my gp to see how that can be sorted. Oh the joys!
I cant help re Dr Reddys other than to suggest you phone Customer Services at the drug cimpany and ask if there are any production problems etc with their letrozole. IF you Google them it appears that the founder is Indian and started the company in India, they appear to have manufacturing plants worldwide.Customer Services in Uk should help. They actually have their UK research and development near me in Cambridge all this is on their website. Hope that helps.
I have been reading through some of the older posts and came across this thread and your reply. I am quite alarmed to read that you have been told that Dr. Reddy's is made in Inida and has now been withdrawn from the market due to poor quality control as that is the brand that I am taking at the moment. Surely if it had been withdrawn back in October I shouldnt have received it three weeks ago! I am wondering if you were just told that because the GP initially admitted that Dr. Reddy's was too expensive and was trying to fob you off? I am really quite worried now if it really has been withdrawn. This in only my second pack of Letrozole, I have had a little stiffness in my hands and feet and had the same with the last pack which was Accord but was so very emotional on Accord with bad mood swings too.
Can anybody shed any light on Dr. Reddy's being withdrawn please?
Update on my trial of Sandoz brand, well 10 days in and all my joints aching again, crawling upstairs some nights so that didn’t work.
I got another private prescription for Femara and had 3 days without tablets to see what happened by the second day I was feeling much better. Started the Femara and much better again.
So next step is to discuss with my GP who has said she will plead my case with the local medicines Management committee to prescribe me Femara on NHS.
So in conclusion for me much less joint problems with Femara, not perfect just a slight exacerbation of pre existing discomfort, unlike the other brands when I had new pain in new joints.
Everyone will no doubt respond differently but it has proved to me how brands differ.
Look forward to your update. I too contacted Sandoz customer services. I have tried locally to get Sandoz without success (West of Scotland). Am now asking friends throughout Scotland to try their local pharmacies to see if anyone can supply.
Like you Gailey I too have been phoning round trying to access Sandoz. I have been on Letrozole for two years and until my last prescription have been managing pain. In two weeks my pain has escalated from my hand to all the way up my arm, back and hip. Until now I had no idea the different brands made such a difference. My BC nurse had told me stop taking it for 6 weeks which I am very nervous about. Boots cannot tell me the brand I was using prior to this one which is Accord , hence me doing my own research Been advised by several pharmacists that if my GP puts the brand on my prescription they will "try" and source it. I am assumimg my GP will not allow Femera, because of the costs.
I have two trigger thumbs a result of Letrozole, swapped me onto Extremestane which has made no difference
im a beautician so this is really not good for me, I do wish I’d been made aware of this side effect!
Extremestane is messing with my liver that’s no5 good either!
your post has really made me think I’m going to show it to my GP see if I can get hold of the real McCoy see if I can get an improvement! Xxx