Femara

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So I saw my GP a little over a month ago about changing to Femara from Lerozole due to side effects with my joints, he said no, so I'm self funding it, but I have asked for and received a copy of my recent discussions/appointments at GP Practice and was livid to see he had recorded on my medical records that I had asked for the expensive replacement of Letrozole ie the Femara, he also wrote I have advised patient that the more expensive brand is not better but the same, I never mentioned the cost, only side effects, I advised him it was the fillers or outer coating most likely causing the issue. He's made it sound like I only wanted them because they are more expensive!  Why, is it always a battle with them.

Femara is slightly better, certainly less pain in my hands but still quite stiff generally.

  • FormerMember
    FormerMember

    I started Letrazole two months ago.  I went to see my GP and explained why I wanted femara specifically.  

    I had a tough journey through chemo, then healing issues after surgery.  I was about to start radiotherapy.  I am still on herceptin, perjeta and zometa, and they all have their own side effects. I have been through enough and don’t want to experiment with letrazole brands, so I insisted on having femara brand.  My GP said she would discuss it with her partners.

    The first two months I had femara, and then last week a different doctor telephoned me to say that they wouldn’t fund femara and I had to have whatever brand they had.

    I refused.  Last week’s prescription cost me over ninety pounds. 

    I have booked an appointment with my GP for the week after next to discuss again. 

    I have discussed the branding issue with my oncologist.  He says that although they are all medically the same, he has so much experience of hearing otherwise from his patients that he believes there is a difference, but that he can’t insist that GPs prescribe a particular brand.

    as if we don’t have enough to deal with...

  • Hi oks,

    How unfortunate that they changed their mind about prescribing you the Femara. Good Luck when you go to see the GP, let us know the outcome. Their is a difference is not the main ingredient its the fillers they use or the outer coating that appears to be the problem with the Letrozole, plus what I was finding was I would get a different brand each time, the worst for me was Accord, after less than a week I was struggling to get out of bed in the night I was so stiff, plus my mood was at an all time low on the Accord brand. The Femara has eased the joint pains and stiffness to a degree, my BC Nurse said other ladies have also complained but it would seem most GP won't fund the Femara. It sounds like you've had a tough time anyway and don't want it to continue.

    Best Wishes. x

  • Hi

    I wonder how much it would cost the surgery for you to consistently arrange appointments to discuss your ailments vs them prescribing Femara?  Could be a question to ask.... after all if you are feeling better in yourself, then you wouldn't need so many visits to the surgery which would clearly be a drain on their resources ... just a thought that if you mentioned the cost of the numerous visits you "will have to make to help ease your symptoms some other way rather than Femara" it might help your cause?

    They can't stop you booking appointments and if you are complaining about the same thing time after time surely they must realise that it isn't cost effective to not prescribe it - and actually might cost them more in the doctors time being taken up withe pointless appointments when they could have just prescribed it in the first place.

    I have an example of "emotional blackmail" I unintentionally used at my doctors.  I have an old leg injury where I had a muscle and skin graft over the shin bone.  It became infected with MRSA.  I asked to be referred to the specialist hospital where the original operation was conducted (I even tried to go there privately but couldn't). I was declined as it was a different region for costing - back in 1980's the NHS didn't have the funding trust areas, hence having the original operation there. 

    Nearly 2 years later (having had BC and 'done' with that in the meantime), my leg still had an open wound with MRSA.  I saw the doctor again and he said "yes I'm quite happy with it at the moment" I lost it totally and said it was making me feel like topping myself,  It wasn't  making me feel that bad but it was really getting me down  - and it certainly got a reaction.  He asked me what I wanted to do - lo and behold a referral to the specialist hospital came 2 months later.  Within a further 2 months it was healed.  The doctor would never have done that referral if I'd not lost my temper and I would still be going to the surgery about it now I'm sure!

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  • Hi lesleyhelen,

    Thank you for your reply but I think it's futile with my GP Practice, apparently I'm now told by Breast Nurse that my GP has written to my Oncologist saying he can't prescribe the Femara it's too expensive and not on their Formulary and asking Oncologist if the side effects I'm referring to ie severe pain in hands and general stiffness is a side effect of the Letrozole, GP's convinced himself theirs no difference between Femara and Letrozole, I know for a fact their is as my Husband has a friend who is a Pharmacologist, he say's it's the fillers and outer coatings that are the issue the main ingredient is the same.

    I think some GP Practices are just closed to the idea of the branded medications.

    Best Wishes.

  • Hi

    Would your husband's friend write you a letter to take to your GP to confirm what he's said to your husband?  Worth fighting with everything you can for your own health if your GP is a stubborn git who doesn't listen to his patients!

    Best wishes,

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  • Hi lesleyhelen,

    Your last reply made me giggle! I can't do with the stress of it at present, I'd rather pay for it and go without something else. when I picked the Femara up from the Chemist I protected like it was gold, cause it's so expensive!!

  • FormerMember
    FormerMember in reply to peterawake

    Hi peterawake,

    Interested to hear how you are doing on Femara? I have had very bad fatigue after a year on various different brands of letrozole and have now obtained a prescription for Femara, as tried one month on it and felt better. Pick it up on Wednesday - can't wait! also hoping other symptoms - I have knee pain and pain on sitting down, not to mention dripping nose - will clear up. Of course it is horrendously expensive, but doctors are telling me if it is better they will consider funding it on NHS...we'll see!

  • Hi one and all

    This time last year all the posts on here seriously suggested Femara was the better brand. Fewer additives and therefore fewer SEs

    So one year on - where the bleep did that year go- and ...

    1. Initially aches and pains

    2. Sitting bones were hell car journeys excruciating. Sacrum think the bone is called   

    3. Awake at night with aches and pains

    Then ........ 

    1. Added. In glucosamine cod liver oil vitamin D. 

    2. Added in gentle exercise . VERY gentle I’m a dear old OAP

    Today

    1. Pains at times but all liveable

    2. Enjoying a holiday - who knew they existed a year ago

    So ..... Femara by far have fewer SEs( for me) and if I add in these extras it’s doable

    Good luck dear ladies and gents - mustn’t forget we have some who have been where we are 

    Leolady56

    Life is like a boxing match, defeat is declared not when you fall ..... But when you refuse to stand up again ....... So, I get knocked down but I get up again. x

  • FormerMember
    FormerMember in reply to Leolady56

    Oh how lovely to read your post, LeoLady56! You are the first person who has validated the pain I have felt sitting down, and sometimes even walking! Two visits to the doc each 6 months apart resulted in two diagnoses...first sciatica then cocydynia...mine is literally a pain in the backside...No-one ever suggested it might be a SE, and it took me ages and a lot of worry before I worked this out. why is it not listed in the SE leaflet? All the more excited to switch to Femara...will also try glucosamine and cod liver oil. Thank you so much for replying...Happy holiday!

  • Hi Eva2,

    I've now been on the Femara a couple of months, to be honest the joint pain is slightly better but not as good as I had hoped, thankfully the low mood has improved, I do believe the Letrozole lowered my mood and made me prone to melt downs!!  The good thing is once on Femara it's the same each time you collect your prescription, no wondering which brand you will be getting, not like the different Letrozoles. 

    You are so lucky to have a GP willing to fund the Femara. I hope you notice a difference.