I’ve been on Femara/Letrozole since diagnosis in April, I can’t change medication as I’ve had DVT so doctors want me to stay put.
Anyways I noticed that I’m on the last box of my supply so the other day I called my doctors for the repeat prescription that goes directly over the road to the chemist.
Yesterday I went to pick up the prescription only to be told by the pharmacist that its very hard to get hold of, apparently there’s only so much supply in England as the majority gets sent over to Europe for the ladies over there, so basically if you live abroad you can have certain cancer drugs before us here.
As you can imagine I wasn’t none to impressed, its quite unbelievable that we cannot access such an important drug as its being sent abroad.
My chemist has taken my phone number and has promised to call be as soon as supplies arrive or if not by mid next week then give me my prescription back so I can trawl the rest of the chemists to find one that MAY just MAY have supplies.
Has this happened to any of you out there ?
Quick update, the chemist has just phoned me and he has managed to locate one box and is keeping it for me, bless him.
He’s just told me that one box of Femara is £80.
I am also on Femara/Letrozole, my next prescription is due end of June so I might just pop into the chemist and ask if they have been having problems. I had a recurrance after two years and my Onc decided that the Tamoxifen hadn’t worked, so had a BSO and now on Femara - so I think its quite important that I get my supply!
Don’t want to scare anyone on Tamoxifen that they are going to get a recurrance - it took 3 ops before I got clear margins so there is a possibility that there was a cancer cell just hanging around till the chemo, rads and herceptin had finished!
Yep - it’s dreadful how supplies of drugs made in Uk are then sent abroad as they get more money for them from Europe. Some of us have had the same problem with Bondronat but my chemist is now organised and knows I need it regularly so it might be worth really establishing close like with a chemist… So chemists go straight to manufacturers if their supplier hasn’t got any. It does feel very unfair…
I am also on Femara, for my lung mets, my chemis originally had problems getting them but she now goes directly to the manufacturer, she faxes them, and we get supply in a few days, at first it was taking weeks. Hope that helps.
My pharmacist gets them direct from the manufactures too - they put in an order for the next lot as soon as I pick one lot up, so they always have some in reserve. Same with bondronat. I use Lloyd’s pharmacy and they have been brilliant with all this.
Hello,
I have been on Femara for 2 years and have always had problems getting it. My GP says that it is being sold abroad and not always for the treatment of breastcancer, think might be something to do with bodybuilding. It was on the top 20 list of drugs that are difficult to get as of last year.
Anyway it was getting a bit silly we were trawling round all the pharmacies looking for it, having to wait several days,my GP couldn’t get it at the time.
Anyway my GP said that the pharmacey at the practice has to get my request authorised and then it can be requested from the drug company, it usually takes a week.
Unfortunately I am no longer able to get my medication at the surgery in my town as a pharmacey has opened up in my village and so my surgery have said that I cannot get Femara from them but the new one or another one in town. So basically if the new one in the village can’t get hold of it I am back to having to find my supplies elsewhere. If that is the case I think I might draft a little letter to the local paper, we shouldn’t have to go through this, we have enough to worry about.
hi
have you tried finding a chemist that has a repeat prescription service.My pharmacist sends my repeat prescription to my gp and i just collect it at the end of the month.I am on femera and bondronat and he always has my prescription preordered from the manufacturer.
Had supply problems originally but this has now been sorted.
I am on Femara now since February this year. Went to chemist this afternoon with repeat prescription and she informed me that they were having difficultly getting supplies. I live in Scotland. She could only give me 6 tablets and said she will try to get remainder of prescription for next week. I have now arranged for the chemist to organise with my GP practice to get my script and I hope that this ensures I don’t run out. We are told how important compliance with our meds are to prevent recurrence and then to have the threat of no supplies is quite shocking. I too, believe that this information of why we cannot get supplies should be out in the public domain. Name and shame Novartis if they are responsible for the lack of supply to women in this country. J.
Sorry, I meant to reply to your question too. I have had side effects which could be attrributed to either the Femara or the Herceptin I am currently on. Achy joints, stiffness and cold like symptoms. Although I do think the cold like symptoms are due to the Herceptin. What I have probably found most difficult is the menopausal symptoms i.e. dryness. I have not had any sweats, etc however I had had a hyseterectomy and ovaries removed eight years ago and think I got through some of those symptoms then.
Re. the dryness we have had to be creative with good old KY jelly and our sex life is now, very gradually, becoming a part of our life. Generally I feel so much better now and feel my energy levels are getting there. I am much stronger and have recently returned to full time work.
I hope that this information is what you were looking for. J.
I´ve been reading this with great interest .
I live in Spain and have been prescribed Femara for over a year now .
In that time I have never had Femara , I have always had Letrozole , the generic form of Femara , which has been available here certainly since my dx. ( Arimidix has been "off licence " longer at least for the last three years here .)
I have had awful side effects from Letrozole . The worst of which was tremendous hot flushes initially every hour day and night . These went down to every two hours when I was prescribed gabapentine, however they were still bad , I frequently wet myself at the same time as I flushed …don´t know why . Numerous other s/e , asthma came back , spotty skin , diahorrea every morning , really sore to wee etc,etc .
This last month , for the first time ever I received Femara from the pharmacia . I thought absolutely nothing of it , until about a week later I realised that my asthma was nothing like as bad , my hot flushes , although almost as frequent were not lasting as long , my genetalia ( undercarriage !) is´nt as sore .
So what is different …only the pills . I cannot believe that this is a coincidence , just don´t believe that at all . So then I started to read up on it , why it could be different . I have various food intolerences . Nothing life threatening , just a blasted nuisance . mainly dairy ie milk , egg yolk , cows cheese , unsalted peanuts . All give me terrible pains before me violently throwing up and having diaroreah( sorry never could spell it …just have it !) so I wondered if my intolerence to certain foods could extend to an intolerence of some of the other ingridients that make up the pills .Obviously the main ingredient is identical , but shells ,fillers etc can be changed . Thats all I can put it down to .So now I have to fight to make sure that I actually have Femara each month and not some crappy cheap copy .
However , back to the point of this .
Your doctors and pharmacists are telling you that all the Femara are going to Europe . They are definately not coming here . The licencing agreement between Novartis and Spain ended some years ago and so Letrozole has been the tablet of choice because of cost . I would imagine , France , germany , Italy are the same .
Not only that , but , the Femara I was prescribed and collected last month came from Novartis Farmaceuticals S.A. ie in Spain from Barcelona ,obviously the box insert etc are all in spanish , so they are not being sent over from the UK.
So where are your tablets going ? Perhaps eastern europe , I don´t know might be worth your while asking .
I don´t know how many more years the licence has got to run in the UK , but you can bet your last pound that as soon as they come off licence you will all be on letrozole anyway , and like me , you could end up having pills from a different parmaceutical laboratory every month . I´ve had five different generic brands , just depends on whats in the chemist that day !!
luv Kris
After reading this thread, I thought I better get my next prescription request in sooner rather than later. Went to the chemist yesterday to collect it and was told they didnt have the prescription yet (didnt believe them), but was in a hurry and couldnt hang about.
Went back today and spoke to the pharmacist, and she couldnt find my prescription, but it was on their system, so couldnt be far away. Eventually it was found, filed away somewhere, because they couldnt get any!!! why file it, why didnt they let me know there was a problem.
anyway, she managed to find me 14 tablets and is hopeful to get some more in next week.
Been on Femara for nearly a year now, and this is the first time I’ve ever had a problem. lets hope its a short lived one.
xxxxxxx
Hi,
I find the supply seems to be erratic and I can go several times with no problems and then suddenly they don’t have enough. I collected mine last week (I get 2 months at a time so 56 tablets overall in 2 boxes) but he could only give me 13, in fact the foil pack had the corner one cut off. He said the suppliers are so restrictive that he gets really cross. He has to block off my name and details and fax my prescription directly to them first and they will not dispatch the tablets until he does with the number on it. If he sends it wed, it comes back friday but if he sends it on a thursday he has to wait until the next tues. I try to keep ahead now, so I have a whole pack in hand when i take my next repeat to the GP. On the worst occasion, I had to collect a tablet at 5pm from the chemist as I had none to take that day and it was very stressful and upsetting.
Jane I agree. When I was on tamoxifen I read that nolvadex -d was a more expensive version with few side effects and nagged until I got it and I did not have the side effects others had mentioned depsite all my locla friends on the cheap ones having a nightmare with them. I was tol femara is the most successful AI but have not seen proof of this in a study but I know it is a lot more expensive than tamoxifen which is a few pence I believe. Good luck with your tablet hunt everyone
Lily x
I am suprised that when the generic versions come onto the market so very cheaply ,( and here that does mean cheap , ) why don´t the original ones then reduce in price .
It´s obvious , that in these financally streched times , that all doctors will be asked to precribe the cheapest available . So I truely cannot understand why knowing this , the original Femara , is not reduced to encourage doctors to continue to prescribe it .After all , at this point the original manufactorers will have had about 10 years withoutany competition in each country , so should surely have regained everything spent in it´s R&D of that tablet .
…fascinating! I am currently on Tamoxifen but have asked to change to AI (Femara being my preferred option.) Onc denied there was a financial implication when I suggested this (hohoho) but a nurse had already told me ‘you’ll be on Tam for a few yrs as it’s off licence and cheap!’ Was given generic Tam and declined it asking pharmacist if it would help if GP specified I had Wockhart? No,it’s what we can get was the response.
But, I have a friend who travels to Spain regularly and buys her Thyroxin there 'cos she’s convinced it’s more pure than the prescribed medication here.
I agree, we have enough to deal with, without this, Barbara
Had massive problems getting either Letrozole or femara.
My GP is based in a hospital and the pharmacy advised me it is a very specialised medication and they get very limited supply. I don’t see why the GP’s can’t advise what the need will be from their patients.
Last time I went into the pharmacy I was told they had none. Took over an hour trawling pharmacies in the area only to get 14 tabs from a 28 tab prescription. Most said they had none but would order them and they would arrive in a fortnight - fat lot of use that is
In future I am going to ask the doc to tell the pharmacy to order the pills for me.
It appears that "Femara " has now come off licence in the UK , so you will proberbly soon be flooded out with all the various generic forms ,which , unless you are very lucky will be the tablet of choice because of cost .
Most of you will be lucky and proberb;ly won’t really notice the difference , but some , will become the 1 in 100 , or 1 in 1.000 who experience various side effects .
I shall watch this with interest to see if other ladies experiences in any way mimics mine .
Kristine
Thanks for all your replies ladies, it certainly looks like this could be a big issue. My chemist so far has been very good and has now managed to get hold of my Femara, and he has said that that now he knows I will be on it for 5 years that he will make sure he gets a regular supply, fingers crossed he manages it.
Re the side effects of Femara, I have to be honest the only thing I have noticed is the hot sweats, which can be very annoying in the middle of the night. I’ve put on a bit of weight too, just a few pounds, but I’m not sure if thats just me coming off my Slimming World diet when I was diagnosed, not too much to be honest and going back on it very soon, once I get my head round it again.