this is the reply I had from Novartis the makers of Femara.
I suggest if your pharmacy can’t or won’t supply you get a prescription and take it somewhere that can get it. You have every right to to do that.
show this reply to your pharmacy or contact the number at the bottom if you have problems.
best of luck Gailey
Thank you Gailey, the last 2 months I’ve had difficulty, with my prescription. I think the problem being my surgery insists using their pharmacy, and they only have one supplier. Eventually getting it for me.
However when I phoned all the other pharmacies in my area, none of them could get Femara for me. I just hope this isn’t going to be every month.
Best wishes to you, Tricia
is this recently?
I'm on Femara and had last prescription a couple of weeks ago. Have you spoken to different pharmacies personally?
I will do some research and see what I can find out.
I’ve tried various brands of Letrozole most giving awful side effects. I then went on Femara, and have been good for the past few months, now I’m told they and other pharmacies cannot get it. This upsets me so much can anyone suggest an alternative that is available
your experience sounds very typical. I would say that you need to give each make about 3/12 that is 3 packets as your body needs to adjust and settle down. Keep a record of each brand how long you were on it and the side effects you had. It is so much trial and error and we are all different to how we react. Get a list of all the different brands and then systematically try them. When I was first on it I tried to be very scientific in the process so I could discuss my findings with my GP and Oncologist so they took me seriously. GPs can also name the brand you want on the prescription when you have narrowed it down.
good luck x
It seems the only way to find what suits is by trial and error. I started letrozole (Manx) just two weeks ago. Today I feel like I’ve run a marathon, hands and hips are aching, along with constant hot flushes, are these all par for the course on hormone therapy? Looks like my next box will be “Crescent” if the pharmacist can’t source Manx in time. Five years on these pills...
I'd a GP like that, told me it was all in my head if I thought different brands had different side effects. He first refused to stipulate the brand I wanted and when I threatened to contact my consultant he changed his mind and reluctantly specified the brand I wanted which was Accord.
That was in Feb 2020 and in the June I'd a phone consult with the consultant because I was due my 1st year mammogram. I was still having a terrible time and he told me to have a four week break until he saw me in the July when I'd my mammogram. When he saw me I told him about the GP and he agreed there are different side effects with different brands which is caused by the binders in the tablets and when he was sending an update to the doctors practice he was going to stated I should be prescribed Accord. That was over a year ago and I get Accord each time I put my repeat prescription in. I'm still stiff and have the odd flush but watching my diet helps. I no longer have the brain fogs and I feel a lot better in myself so much so that after 20 years of being a stay at home mum to my daughters I kept the promise I made to myself that when my youngest was 16 I'd look for a part time job and last week I started a new job.
Please don't the GP tell you what to do, it's your body and you know which brand is best for you. xxx
I agree with other replies - your GP is completely wrong. My GP offered, without prompting, to specify on my repeat prescriptions the brand of Letrozole which best suits me. Unfortunately I haven’t yet found the best brand. I started with Femara, which caused awful side effects. I’ve been taking Accord for 4 months, and although the side effects have reduced I still have frequent nausea, diarrhoea and hot flushes, and weight gain. I can cope with the nausea and hot flushes but the diarrhoea is challenging to say the least! The fact that I have IBS doesn’t help. I’ll give it another month but if the side effects don’t diminish I’ll ask to try another brand. I’d be interested in other people’s experience of different brands.
that’s rubbish....I would be changing my GP....mine always put accord on my prescriptions and my pharmacy always source it....except for one time they couldn’t....then I took my prescription to another pharmacist who got accord for me. The GPS May have no control.... but if they specify then at least the pharmacy will try to source for you.
take good care
I asked my GP if I could stipulate which brand of letrozole I received - I was told in no uncertain terms NO!
Apparently, they have no control over what brand will get sent when ordered.😓
All the generic brands contain the essential ingredient Letrozole. The difference is the added constituents, which is why we all react differently to all the different brands. I’m afraid it’s all a matter of trial and error. I have now been on Femara continually for 3 years and it’s fine, the longer I’m on it the more settled I feel. I can only say persevere as it is saving our lives.
Did any of the generics actually contain the active ingredient we need? That is the part I can't get an answer about...I went around and around with the US National Institutes of Health yesterday-as expected they gave me the pat answer saying generics are the same. How do we know that if no one is testing them? In theory they are the same-but in practice?
Good luck to everyone -I hope the UK is better than the US about ferreting out this kind of stuff
I take accord...I specifically asked for it as I 7sed to take accord tamoxifen and was ok on that ....my gp specifies accord on my repeat prescription....my friend couldn't get along on any of them and asked for femara..... she's very much a believer of ' you don't ask...you don't get'....anyway l9ng story short ...thats what she gets every month now....5 or 10 years is a long time to get side effects....so we need to make sure they are as minimal as possible ...hope it all works out for you
Wow! Thanks for all your detective work. You are 100% correct that as consumers we have the right to know what’s going into our bodies. I picked up my very first pack of letrozole last month from the hospital pharmacy, it was a “Manx” box, the only type they supplied.
I also done lots of research on letrozole brands prescribed in U.K., I also emailed Manx to find out where their brand comes from as the patient leaflet stated it was manufactured in Malta. Manx told me that they have the licence but I have since found that the actual manufacturer is Sun Pharma, India, hence VERY cheap to supply. I looked up all the different brands to compare ingredients and this what I found...
SANDOZ & ACTAVIS contain NO sucrose, gluten, tartrazine, or azo dyes.
CIPLA contains E102 = tartrazine, an azo dye. E102 is banned in France, Austria and Norway yet it is still permitted in U.K. Why on earth does tartrazine need to be added to a pill anyway???
CRESCENT & ACCORD have identical ingredients.
ACCORD is the generic closest to FEMARA.
DR REDDY’S & MANX have identical ingredients.
I will see how I do on Manx, if I feel not too bad on it then I will insist on having the same brand when my GP writes the prescription. Unfortunately there’s no hope of ever having a supply of FEMARA!
I know this is an old thread but I'm posting in case other find this- as I did -searching for Letrozole information. I know there are a lot of problems with inert ingredients in prescriptions but how do we know we are really getting letrozole itself if we take a generic? In the US, it is the Food and Drug Administration who should be responsible to test incoming drugs, but my understanding is that they've given that responsibility to the generic drug companies themselves (who obviously have a vested interest in using cheap alternatives and a very real interest in doing incomplete tests or screwing with the data). I hope the UK has a better system for testing generics.
Here is what I've found so far, but it's obviously just the beginning.
This 2019 testimony from the head FDA shows just how many gaps there are in the process of getting foreign generic manufacturers tested.
If you read between the breezy overview of how great the FDA is you can see they don't have enough inspectors, don't test often enough (avg 2 yrs) and they take a very long time to submit a letter asking for improvement (a few years) In the meantime we are still taking these drugs.
There are some companies that do independent research, such as the Valisure, the one that found generic wellbutrin 300 mg did not perform and notified the FDA to pull it. (that took 5 years) I don't know much about them but plan to investigate. They might be able to provide a list of ingredients for meds which I know someone on this post was working on. If they can't here is an option at least for the inert stuff:
You can ask your pharmacist for a list of the inactive ingredients in your medication the next time you refill your prescription. Our pharmacists are happy to help you find an alternate formulation and answer any questions you might have. Also, this website allows you to look up your current prescription’s inactive ingredients when you input its national drug code (NDC) in the search bar. The NDC consists of 11 digits and can be found on the medication label. You may need to ask your pharmacist for this information. In sum: trying to figure this out on your own really stinks but Valisure is here to help.
I have no affiliation with them. I'm just trying to learn what's going in to my meds. So far it doesn't seem like any authority is doing so.
There is also consumerlab but it looks like they mostly test supplements. I will be looking into this as well. (the big argument against supplements is the the FDA hasn't approved them....it looks like they also aren't really watching prescriptions either).
The other option is to get Femara via your health care system or self pay-which is really really expensive-here it's $700 a month. The next best option is to get generics that are made in Europe because there are fewer problems than other parts of the world (the FDA testimony linked above gives the stats on each area).....but just how you'd know where the drugs came from is beyond me.
You can call me kooky, but I think as consumers of Letrozole and other drugs we have a right to know BOTH if they are safe (as in not contaminated) and if they are effective. It's not like we are taking letrozole for a headache. Good luck to all of you on the other side of the pond.
Good to hear you’re getting sorted with the right brand and wishing you a happy birthday coming up. Always good to hear positive results.
Hi girls, so the state of play at the moment is , I called my doctor before I posted last post, and the results from that convo were , she got a member of staff to ring round the chemists in the surrounding villages, and eventually found 2 packets of CIPLA, I am going to finish the MANX, and see if they have made any difference, I think its possibly too early, but we shall see, I have 2 more weeks on these. Then I have 2 months of the brand I know I can tolerate. They will keep doing this for me, which I think is fabulous. So I'm already feeling elated by knowing someone is helping me, that is a great feeling, it's my birthday on the tomorrow and on the 9th is 1 year since I found the lump, so lots to celebrate , I think. Anyway thankyou and good luck, I'll keep you posted as to how I'm getting on with the medication.
Have been following this with interest. I'm on Letrozole but also have arthritic knees plus a recent fall which has not helped. With the advice of my oncologist I took a break from Letrozole for three weeks - not sure it made a huge difference. I was on Cipfa brand but following advice from this site, I asked my chemist if I could have a different brand and am now on Accord - I think my GP also may have put my preference on my notes.
I had called my oncologist's secretary and asked if I could have an appointment - either face to face or over the phone - it took a while but she did phone which is when she recommended that I take the break.
I have since called up my onco's office to ask if I can actually see her and have been given a face to face appointment in July. I totally echo what the others have said - I think you really need to take control and push for support. And to have someone who will advocate for you is excellent - I know only too well how hard it can be to do this on your own. But it's your health - both physical and mental. Pick up the phone and call your oncologist's secretary or at least your GP. I wish you well.
JamJam, I’m so sorry to read how terrible things are for you, and I echo what Gailey said.
Please don’t give up on this life saving drug and speak to your GP urgently. Can you ring your Oncologist’s secretary at the hospital and get an urgent appointment with them too? It will probably be over the telephone I know, but they need to know what you’re going through. Sending you a hug.
Dear Jam Jam
We all know how hard it can be and sometimes it all feels too much but don’t give up now after all you have been through. What you are saying on here and what I am reading between the lines it’s time you said all of that to your Gp or better to your Oncologist if you can. No one wants you to stop a potential life saving drug just because of some bureaucracy. It’s total nonsense that your GP can’t specify a brand on your prescription. If it’s all getting too much ask a friend or relative to come with you to an appointment to advocate for you sometimes we have to cause a few ripples to get what we need. Take some breaths and get ready to get what you need. Lots of hugs and positive vibes to you.
I spoke to my local pharmacist, she also said its just what we get sent, but has made a note that I cannot take ACCORD.
I was crying and she the suggested I see the doctor about my mental health. She didn't say those words, but said your obviously not yourself. And not coping. I have been poorly for a yr coming up next week, after the radiotherapy I got a frozen shoulder then 3 and half month ago got chronic sciatica, just had MRI for that. I've not had a break, just loads of pain meds. And I can't even get my cancer drug right. How I've got through this is beyond me. No one cares. Not even the breast nurses, they just fob you off, or say try the new and let us know. Ot will come to a point were I will just come off them all together and take the risk, if I don't sort it soon.
Hi jam jam,
Could you ask your Oncologist to request your GP to prescribe the brand? That’s what I did. I’ve found independent pharmacies are freer to use whatever suppliers they want to ensure they can get the brand of Letrozole stipulated on the prescription. Hope that helps.
Another suggestion, if you have a nice helpful pharmacist or can find one, more likely in a local pharmacy talk to them. They may be able to always have the same brand for you. Or have another talk with your GP or breast nurse or even get your Breast Consultant to write a letter. It is so obvious that women have the most awful side effects from some brands you just need to find someone who understands. I don’t understand why some professionals make it so difficult. Good luck.
I have asked my doctor to stipulate the brand on the prescription, but said, can't do that. Maybe different areas do things in different ways.
Feel like I'm left in limbo,
Hi Dawn and Jam Jam
i agree with Dawn if you prefer a specific brand get your GP to specify an your prescription. Most GPs will put Letrazole ( generic version) on the prescription and the pharmacist will dispense whatever they have usually the cheapest which is why you get a variety and not consistent.
as you say Dawn this drug suppresses our supply of Oestrogen and there are a lot of side effects from this lack I would guys your peripheral neuropathy is just that. My side effect is the elasticity of my muscles and joints it takes very little to width and become liken elastic band!! Lucklily my husband is a massage therapist and can sort it out. I think we all have to balance these effects with the knowledge we are hopefully keeping a recurrence at bay!!! Keep well everyone x
Hi Jam Jam, If you find a brand that suits you, you can request it be stated on your prescription, or you will be given whatever is in stock. I have it stated on my prescription that i have accord. I have had no side effects on accord for a year, but all of a sudden i have peripheral neuropathy in my hands and feet, which can be a side effect of letrozole. I can only presume its an effect of having no estrogen in the body for awhile now, which is what the drug does.
I am at a bit of a loss now, as to try another brand or not, or whether this would happen anyway, whatever brand i am on, as the purpose of the drug is to stop estrogen in the body, which is obviously going to have some side effects on the body long term.
I have just started MANX .only 1 week in. I was OK ish on CIPLA, but chemist gave me ACCORD, that was terrible, my joints were and are still so bad that if I go to the floor, I can't get up on my own without leaving on a chair.
so chemis now changed to MANX.
They can't seem to give me any brand constantly. They change every month now. I'm struggling so much.
I hope this Manx is better. And that I can have it regularly if it's OK.
I wish they could just give me CIPLA every month
I don't know what the problem is with the distribution of the brands.
Apparently they havent changed the ingredients in the Accord brand.
I emailed Novartis, the manufacturer of Femara, about why its costs so much, and why chemists cannot seem to source it. Doctors don't seem to want to prescribe it, because of the cost, which is why they prefer to prescribe the cheaper generics.
This is the reply from Novartis. The layout changed slightley when i copied and pasted it:
Thank you for contacting us for information regarding the availability of Femara® (letrozole) tablets. I
understand that you would like to know why Femara is higher in cost than letrozole manufactured by
other companies. You would also like to know how you can obtain Femara if you have a prescription for it.
Femara was the original brand of letrozole manufactured and the price set at that time reflected the
research and development costs associated with bringing a new medicine to market. Once a medicine has been available for some years, development of generic formulations of the medication is permitted
and, sometimes, the generic formulations are less expensive.
If you have a prescription for Femara and your pharmacist is having difficulty sourcing the product, I can
confirm that there are no stock issues with the product and would suggest that the pharmacy telephone
our Customer Services Department on 0845 741 9442, who should be able to advise them further.
I hope that this information proves to be of use to you. If you require any further assistance, please do
not hesitate to contact me.
Medical Information Department
Novartis Pharmaceuticals UK Ltd
I seems to be such an individual thing, as what suits one person, can have awful side effects for another. Ths makes it difficult in saying one is better over another for any individual. Its gonna be trial and error for us all it seems, unfortunately.
Glad you found one that suits you lisabeeb.
I am in my 8th year of having hormone treatment after a mastectomy. 5 years of Tamoxifen and now in my 3rd year of Letrozole. I can't take either Cipla or Accord as they make me headachy and sick with a bitter taste in my mouth. sun pharmacy is the one I take and I have no side effects.
Thanks Dawn for posting this. As I've said in response to Gailey, I've just been given Accord - not sure why but I'm hopeful it will be a better option than Cipfa. I have read somewhere that Accord has changed its composition recently - did I get that right? Sue.
Thank you Gailey for your response. It's really helpful to know that you have managed to get Femara prescribed. I started Letrozole last November and have had the Cipfa brand. I've just had a month's supply of Accord - will be interesting to see how that goes. From everything I've read, I'll see how it goes but if I'm still walking round like an old lady, then I'll stick out for Femara. Thanks, Sue.
Hi yes I’m in Uk. I have a very helpful GP who knew I was having lots of problems and had gone through most of the generic brands. Some days I crawled up the stairs as I was so stiff, I had trigger thumbs for nearly a year. When I had Femara and was so much better she e to be in wrote to the local Medicine Management Committee and they approved her prescribing Femara. If you have to be on a drug for 5+ years you want to feel well. I have never had problems getting in and mine is a Dispensing Practice.
I was a nurse Manager in NHS so well aware of price etc but at end of day you do what’s right for you. I tried Accord the worst and Teva not so bad.
Hi Gailey, Are you in the UK? As I am interested in whether your chemist, or any chemists you tried, had a problem getting hold of Femara, and what chemist dispensed yours? Thanks Dawn
I have looked at Femara ingredients Vs Accord, as Accord has the closest ingredients to Femara. I also looked at all the ingredients of all the other brands, which tended to have extra E numbers and fillers not present in the Accord Brand.
I know Femara is incredibly expensive for the NHS, which is why i tried to find the nearest match to Femara, as i dont really want to cause the NHS this extreme cost on a monthly basis, which is another reason why the doctors also don't like to prescribe it. In my research at the chemists, Femara is also very difficult for them to resource, with all of the one's i asked saying they just cant get it anyway. In saying that, I also dont want some of the awful side effects people are getting from some of the other brands, but i feel the Accord brand is close enough to the original Femara to be a good second choice.
The important question is, why does Novartis, who make Femara, charge so much for their Letrozole in the UK? Their ingredients are so very slightly different to Accord's, who charge's £2.60 for 28 tabs, to Novartis's £90 for 30 tabs. You can strangely enough buy Femara online for £28, from Turkey! I was suprised to see that Teva letrozole costs £73! Its all a money making exercise as far as i can see, as with a lot of the pharmaceutical companies.
I am happy with the Accord brand, so will stick with it. I get a few side affects, but i feel it is the better choice than some brands regarding the ingredients.
Sorry to continue fight your corner and be prepared as I did to try a month of Femara on a private prescription to prove your point. Femara has less additives and preservatives and for me was better within the first few tablets. Good luck all of you .
My advice to all you Letrozole users.
I am 4 1/2 years into taking Letrozole went through every generic brand with all your side effects and finally tried the original Femara and have been on that for nearly 4 years such a difference. Talk to your GPs Oncologists and be prepared to figh
I switched to Accord after horrible joint pain on another brand. After six months of lessened side effects, I am having trouble with my knee and Achilles’ tendon. My leg totally gives out sometimes. I am also having terrible back pain. It makes me sad. I just had a PET and MRI, so it is the medicine. Getting off the med isn’t an option. I think the Accord is a different color of yellow now.
I am glad you have found relief by changing medications. I feel my symptoms are quite minor at the moment, and have not had any symptons to speak of until a month ago, other than occasional nausea and a dizziness on a few occasions. I just noticed my hands were getting achey, so wondered if there had been a change in ingredients. I have been on them since april, and was expecting a lot more side effects than what i have had, so feel quite lucky compared to some people. I am post menapausal, so feel i did not have a lot of estrogen left to block, so feel my side effects are probably a lot less than for pre menapausal women, who really must feel the effects. I will stick with the letrozole, unless my symptoms get worse.
Hi Dawn, My GP suggested I contact my Oncologist to see if they would recommend another option to Letrozole, which they did. I stopped taking Letrozole for a month and have just started Anastrozole 1mg. I felt a lot better when I came off of Letrozole and didn’t have heart palpitations, which caused sickness and a little dizziness too, some episodes where worse than others. I had been suffering with these at least twice a week. I was still a little stiff but back pain wasn’t there and didn’t feel as achy. I still had tingly feeling, pain and sensitivity in hands and arms through the night which didn’t seem as bad however, I think this is a problem from chemo but may be aggravated more by certain medication.
I have only been on Anastrozole [Accord Brand] for 5 days, with no back pain, which is great. Hand and arm pain through the night has got a little worse again, as with Letrozole. And the first couple of days I felt nauseous but that does seem to have stopped. Therefore, I feel it is progress, and hoping will continue.
Maybe worth you checking with GP/Oncologist what your specific options maybe. Good Luck
FYI - I also communicated with Accord Healthcare however they said they have not changed ingredients. They did request I logged side effects with them, which I did, and they confirmed info with my GP too.
Sandridge. I too have been getting noticable pains in my hands and forearms since taking the last batch of accord letrozole. I have been fine on them up till now, but maybe its just a gradual build up of the drug in your system, which is starting to affect the body. How would we know, especially if the drug company are saying there has been no change in ingredients (kdiaminds 44 asked them)?
I’d be very interested in how you get on with Manx. I was offered them one month but refused them as was scared of side effects.
I am presently having a similar problem of sever pain when started taking last batch of Accord. I had it first Jan 2019 and changed to Accord and although often struggled to get Accord brand at each new prescription. So Accord had been good for 19 months, but started new pack and on day 5 had severe back pain also had stiff hands, more hot flashes, blurred vision etc with the change too but can have these but not as frequent. Therefore believe Accord have changed their ingredients/coating. Did you find out if this was the case when you wrote about it back in Jan 2020? Which brand did you find good for you? I don’t have past pack to check if product number changed which would mean ingredients change. I would aPpreciate your advice.
I’ve been on the Aacord brand of Letrozole for the last 10 months and suffer with painful bones, joints and hot flushes. I’ve just been given a different brand with my latest prescription, Manx Healthcare, that I haven’t seen any references to on this thread. I’ll let you know how I get on with them.
I’ve been on Letrozole for 3 years, and I don’t know if this will help, but I asked my GP and Oncologist to request Accord brand of Letrozole for me as this is the brand that gives me less unpleasant side effects. Secondly, I changed to having my prescription sent to a large Branch of Boots as the seemed able to order and dispense Accord more easily than the small branch of Lloyds I had been using. I have further to travel, but peace of mind. Thirdly, I have found taking a joint supplement containing Glucosamine, omega 3 fish oil, & vitamins C & D has helped enormously. Keeping active by exercising has helped me too.
I’ve also had problems getting Accord which is the only brand I can tolerate. In desperation I’ve just contacted Accord who say there is no problem with manufacturing and warehouses should be stocking it. They said pharmacists can contact them direct if they have a problem