The difficulty of getting Letrozole.

hello,over70,

yes, most of us have problems with Letrozole

I managed on Accord for 7 months,(sourced by a local chemist  as the oncologist had put Femara the expensive brand on the recommendation so my GP had to prescribe Accord the most expensive generic but refused to supply it (he runs his own pharmacy on a budget) but even on Accord  I was getting unusually emotional,upsetting my partner,, and had pains in my hands and trigger finger.

I was accidentally given Teva by a new pharmacist and took it without realizing fora few days. I  felt slightly better on the Teva, more like my old self, and had read that the  Cipla makers (in India) were taking over Accord,( Barnstaple.U.K). so decided to try Teva instead of Accord.   As Cipla was the cheapest, and had been using Tetrazine as one of the coating ingredients which is banned in some countries,i didn't like the thought that they were taking over Accord. My doctor, who had refused to order Accord, was happy to prescribe Teva,so it must have been cheaper for him.

Now, after  a couple of months on Teva, my hands are very very painful and knees really hurt, so maybe they are all as bad as each other. One lady has posted that she felt pretty awful even on Femera..the expensive brand, others say they sailed through the Letrazole treatment,taking any name they were given with very few bad results...... so where does that leave us.   I am wondering if it simply means we are losing oestrogen at different levels  and since the body needs it we are getting all these side effects as you would in a menopause. (can anyone who has been through a menopause discuss this )

I ,too, am over 70 , but was on HRT for a long long  time.so avoided a menopause and was .completely fit and well I must say . .Now I am  too fed up to keep arguing with my GP and  trying  different brands so  I will keep on with Teva and if it gets really bad, try,as a last resort,  to buy Femera privately to see if it really is better but .I believe it can cost over £100 a month! so it would knock my small savings sideways.  If you have a sympathetic GP (mine certainly isn't) you may be o.k to keep trying to find the best for you..especially Femera but bear in mind the supply situation as many come from European countries. PLEASE do let us know how you get on. Sorry I was no help, but a very warm hug.and good luck.    to all of us.

Hello calador

Thank you for your comprehensive reply.

Will certainly keep on trying and report back. I still wonder if there is already a shortage of Letrozole as the pharmacy l visited today seemed genuinely concerned at the lack of choice for us.

I would love to get some sympathy from a GP, but have concluded that this is a grey area for them. Side effects what side effects?

At the moment l am recovering from my second knee replacement, so have plenty of time to pursue and pester!

Best Wishes

good morning over70.

thank you for your reply and i very much  hope you progress well with the knee...... my motto:. never give in.

have a peaceful day.

best wishes.

Hi 

I am having the same problem. Have tried most brands but none suit me, all the usual side effects and end up feeling really ill.

Have been taking Dr Reddys letrozole for past 3 months & they seemed to be better. However the past 2 weeks my hands have been 

dead at times with pins & needles especialy if I put any pressure on them or lean on my elbows. Not sure if this is a side effect.

Already have trigger finger in both hands.  Has anybody else suffered from this?  Currently awaiting blood test results.

I too have had tremendous problems sourcing Letrozole, ringing around & travelling distances to collect.

Do hope you source some soon.

Best wishes

I read with interest your comments re the letrozole as after 2 months into treatment the side effects have kicked in big time for me.

It is mostly the joints of my fingers and my knees.  I can hardly stand up at this time of night.  Also skin is starting to feel so dry and spotty under the skin, esp on the face.  Had the cross between chilblains and athletes foot on my toes but that cleared up on its own after a couple of days.  No idea if that was due to this medication or herceptin which I still have every 3 weeks.

It prompted me to dig out the box and see who makes mine.  Couldn't be more generic I think 'letrozole 2.5mg by Manx healthcare.' Listed as Distributor.   Spanish names on the back listing for marketing and appear to be made in Malta. So multinational!  

Also wonder why it is your problem to source it?  Do you not get this on prescription and if so, is it not the responsibility of your pharmacy to get it in for you?  Its enough hassle taking the pills and its side effects without chasing the countryside for the privilege of it doing it to you !!

Good luck no matter what the outcome of them in the  future!

Hi over70

Completely omitted it in my  28th August post (brain fog) that I had contacted the Dr Reddy distributor in Beverly around 3months ago when I was having difficulty with supply. I was told the manufacturer in Malta had indicated that supplies would be available in the UK in October . I will call again on Monday to see if this is still the case. i have a 30 mile round trip next week to pick up some Dr Reddy's from Leicester after many phone calls.

Be in touch

Hi Over70,

I have been taking Letrozole for 16months and have always taken Accord.  My pharmacy has just given me Teva which I will start taking next week.  Having now read your post and the responses about the varying side effects I am going to await with interest to see if I feel better or worse by end of September.  

Currently I have very aching joints and get very stiff all over if I sit or lie for any time.  Also have a lot of pins and needles in hands and waken most mornings with what feels like swollen hands.  Have, to date, just put it down to one of the things I have to put up and be happy that I am free of cancer.  I will now keep an eye on whether the side effects get worse/better with this new brand and will let you know.

Have never had a problem sourcing Letrozole, pharmacy just call me when new prescription is ready to collect.  I live in Greater London so maybe easier here because of the large population?

Good luck with your search. 

Success! At the eleventh hour (3 weeks of trying) 2 packets of Accord have been found at an Asda pharmacy.That s 2 months sorted, before we start again! It would seem that in my area  Cipla or Teva are the only brands coming from the warehouse.

Good luck to everyone who wants a named brand. Wish l could have recorded the GP’s intake of breath over the phone when l suggested Femera instead!

So much for jubilation. Drove a considerable distance clutching the prescription, only to be told they didn’t have it. The packets had not been put to one side despite 2 phone calls from me to confirm l was coming.

l am sorry to say that l did rant a bit.I now have 4 days left so will just have to take my chance with whatever l can get . 

It just shouldn’t be this hard!!

. PS Just to make me feel better l have also been told that the  cream l have been prescribed for years for my arthritic hands to help me knit etc is not available any more.. Been given Ibuprofen gel instead. Now if that worked l would have been buying that off the shelf at Tesco myself. Have a good Monday everyone.