battle of the letrozole brands

In the best way .... if I could have a £1 for every time I’ve read this. I’m so lucky I got the oncologist to say Femara and my GP has just carried out the instructions. I spoke to a pharmacist just recently and she agreed it was all the additional rubbish  that was added that caused the issue. 

Maybe either ask onco team to state to GP. Or go to GP and show them how you are. Say exactly what you said here 10 yrs of giving you meds to counteract letrozole or the right letrozole and. O extras !!!! £££ signs should not be the determining factor our health should 

Take care. Keep moving 

Leolady56

 Hi Ginacarla,

i was offered Cipla once but refused it, got my regular pharmacy to order Accord. They began to make a fuss a couple of months later so I got my GP to put ‘please supply Accord brand’ on my repeat, which seems to have worked. I have built up a couple of months of stock so if they need to order I still have plenty. Oddly, GP checked on his list of brands and Accord wasn’t there but when I explained the problems folk have he understood. 

As we are on it for a minimum of 5 years I feel we have the right to insist on a brand that doesn’t need extra meds for all the side effects!

hugs xxx

hi moomy and Leolady56

yes I am aware the discussions have popped up so many times...  Just wanted to find out if there had been any progress. Amazing there is so much research but nothing on SE....

I have been on letrozole for 10 months now, not that long of course, but with plenty of ups and downs for SE

I had to make a fuss at my chemist about 6 months ago and eventually my GP agreed to specify 'accord' and SE seem reasonable now but still having bad fatigue.

The last time however, after the femara 'rejection', my GP just sent a prescription and I ended up getting Cipla.I thought I would give it a go but it is hell

I am not a chemist but thought I would check on the ingredients,  It is baffling that such minute differences can have such massive effects. 

My oncologist said for me I would be  on it for 10 years, I was told I could stop a few months and see how things settle down. Apparently a break is fine. But stopping also freaks me out...

Thanks for all your supporting comments, it means a lot to me.

GC

Hi Ginacarla an interesting topic and like you I have had the cipla brand a few times and they are awful for the side effects so you have my sympathy.

I had asked a pharmacist colleague of mine why I couldnt get the same brand and she said that each chemist gets a delivery from a warehouse that uses a picker and so that meant that each chemist could in theory get a different brand so to ensure the same brand I would need to trail round about 10 pharmacies. So like you I have put up with god awful side effects for months now until recently when I had a strange experience.

Hubby went to the chemist for me to pick up my prescription and phoned me to say that the pharmacist wanted to speak to me which I did. It said on my prescription I was to have the Accord brand but they were unable to get this and hadn't been for some time was there a brand that I preferred? Now that was a novelty!!! I have opted for TEVA  which they can get and have assured me that they will try their best to ensure I get this which I have for the last 2 times and I can tell you the side effects are definetely less and whilst still there nowhere near as debilitating. 

I'm like you and have been told I could stop for a while but not keen to do that as I am not brave enough for that so just keep taking the pills.

I wonder with all the comments on here if we could persuade Macmillan to help us to compile a letter to see if we can change this as as you say 10 years of this is not very encouraging?

Sending very best wishes for now .xxxx

hi GRANNY59

I have decided on my own experiment: I stopped taking Cipla for just 24 hours, and I immediately felt better. I have now taken it again and see what tomorrow brings. I just wanted to see if indeed it was Cipla and nothing else.

If it is Cipla then I will re-order Accord only. I do hope it is available, a bit worrying you think it might not be...

My BCN mentioned to me that the hospital can insist on specific prescriptions at my GP, including femara as the hospital believe it is better for me to be reassured and take it for 10 years compared to me stopping and then running the risk of recurrence. In the end it is all down to cost...

I think I have taken teva just once in the 10 months but at the time I had 3 different brands in a row, no wonder it caused havoc in my system...

Yes, getting Macmillan involved would be great. It is so hard to endure this for such a very long time. We go through surgery, radiotherapy (I did not have chemo) and after a few months, everything is 'back to normal'. But I think with letrozole nothing is quite normal. It is such a challenging drug with so many SE and so many women having different reactions....

Sending you a big hug.

GC

Hi all

I have been taking Letrozole for 5 years and have recently been discharged from secondary care to primary care (GP) I have been advised to continue taking Letrozole for another 5 years. At the beginning I tried several brands of Letrozole and ended up with Accord.  I can sympathize with those ladies trying different brands, persivere you will find the best one. For me the side effects have not gone away I just tolerate and manage them.  Good luck 

Hello All

Does anyone else take Dr Reddy's brand?  I was given this by hospital pharmacy and decided to stick with it as the SE didn't seem to effect me too much, and didn't want to run the risk of changing to another brand that gave me worse SEs.   It proved difficult to track down a local pharmacy who could/would stock it for me, but eventually I did and they get it on 'special' order for me.  My GP also agreed to write on my repeat prescriptions that I was to have this brand.  I have been told a few times that it is very expensive.  If this is so, why is it handed out in the first place?    I did ask my oncologist but he didn't know!    

A very happy new year, and lots of love to all

xx

Hi Gincarla,

I've been on the Cipla and feel exhausted, for first couple of months seemed ok but for last 6 weeks or so I feel exhausted and crippled with pain in my hands, to add to it all they seem to be lowering my mood! I'm off to GP in New Year to ask for Femara, I think it will be a bit of a challenge to get it but worth trying. I've noted this is a regular Topic on the Forum.

Sharon.

Happy New Year Sharon,  

Wishing you the best with your Gp I was very ill when taking generic Letrozole and oncology asked my doctor to prescribe "Femara made by UK Novatis .

Femera is made in numerous European countries packaging is identical but all using different filling compounds and that is what your body is reacting to. 

Femara UK Novatis is the one I have been taking for the past 5years, my swelling was reduced my joints hurt less and I am able and enjoy going to the gym once again at 70 I am feeling so much healthier after being bedridden from chemo. 

Its good to write a diary of all the problems so you don't forget when your with your GP, he must write on the prescription UK Novatis  as many chemists find it difficult to get that specific one. My local Boots have been brilliant.

Wishing you all the very best and a healthier 2019

Marie

Hi Marie,

Thank you for this information, it's really useful and I will certainly ask GP for the UK brand.

Hope you continue to improve.

Best Wishes for 2019.

Sharon.