Anastrozole

Hi Purbrookian

I'm so sorry to hear that you've had to undergo all this twice.

The ER+ medication does seem to cause some people a lot of side effects and there's a lot of people who say that they've got them with  Letrozole and Anastrozole.  I'm on Anastrozole (it seems less people are, but I have never found out why I was on it and not Letrozole!)

I had Accord brand and found I was fine; without side effects, then one month they gave me a different brand - OMG I was crippled within a day!!!   I tested it out later (as luckily I had some Accord spare in the meantime) and the side effects disappeared when I went back to Accord.  Then when I tested one of the new tablets later in the month, the exact same pain came back.  So, from that moment on, I asked my Doctor to put on the prescription slip "Accord Brand Only" 

Then for a few months a year or so ago, Accord became unavailable - despite trawling all the pharmacies in the town/ contacting the manufacturers who were having distribution issues. So, I started looking at the ingredients of the coatings and TEVA came out similar to Accord - I was fine on TEVA too.  If you're doing 'ok' on Accord, but having some side effects - see if you can get TEVA brand next time and see if it makes a difference.  There are only tiny differences in the tablet coatings of these 2 brands, but you never know that small difference might help. When I looked at the difference in the coatings of the brand which crippled me, they were huge!  (I now have "Accord or Teva brand only" on my prescription slip from the doctors).

And yes, I think it's the breast care nurses who look after us - I had my final meeting with mine about 3 months after finishing radiotherapy if I remember right. She didn't discuss the tablets at all - it was just a 'sign off' really - even though we can contact them at any time during the 5 years.  My doctors haven't spoken to me once about my treatment since diagnosis (4 years ago in June), so I think unless we go into them and complain about anything, they think we're getting on ok.  I order my prescriptions online with my doctors, so I just put notes in to tell them to amend my prescription slip and I think 'cause it's easy to do, they do it and they haven't had to worry about seeing me.  Mine was obviously pre-Covid, so I think it's all normal that unless we contact them, they just assume we're getting on ok.  (apart from the annual mammogram of course).

Hope this helps a little,

Best wishes, Lesley x

Thank you Lesleyhelen I had one packet produced my “Mylan” that really made me have hot flushes all day and all night. My first packet was “accord” so I’ve gone back to that. It’s my Achilles’ tendons and knees that are suffering, and I can’t afford to be hobbling around for the next 5 years.

Hi Purbrookian

I've had the 'odd' knee issue, so it may well be the tablets - it's definitely worth trying different brands and seeing if they make any difference and settle for the one that is the best for you.  It may just be that something in the Accord is setting off a reaction to your tendons and knees.

Lesley I think it was the ‘Mylan’ version that made matters worse. It’s calming down with the ‘Accord’ version. I watched this video with Breast Consultant Liz O’Riordan https://www.youtube.com/watch?v=GPTDCOvHOwk. and I found some of the answers I wanted. 

The video is new filmed on the 29th March it’s the last part of the video on ‘the best tips on coping with Tamoxifen Side effects- the C List’ where she deals with letrozole.

Hi Purbrookian

I'm pleased to hear you found some answers in that video. 

This is some research I started with the coatings on the tablets vs brand.  (I can't seem to upload files since the updates), so have had to copy and paste.)  I saw that the Mylan version was awful for you (consilient was the one that was awful for me).  I hadn't got around to seeing what was in the Mylan brand's coatings.

As the Accord is better for you (although you mention not perfect because of calf muscles and achilles), if you look at the Teva, they are similar but not exactly the same.  On the Accord, very occasionally one or other of my knees 'goes' but this never happened on Teva.  I have Accord or Teva, because it's still so occasional on Accord that I'm not that worried, but maybe as things are settling for you on Accord, the Teva might even be better?  Who knows!! Unfortunately we all react differently to different tablets and it really is a case of trialling them to see what works best for us as individuals.

Best wishes, Lesley

Lesley thank you so much for this information. I can now work out ‘what’ it is that upsets my body system so much. I also had problems with Sun manufactured Anastrozole. I know that the lose of lubricant in joints has to be replaced by doing exercise, and that that exercise results in lubricant in the joints. I once had a knee injury and the physios taped my knee cap in a different position to ‘normal’ and it did the job. Maybe skipping is my next move 

Lesley thank you so much for this information. I can now work out ‘what’ it is that upsets my body system so much. I also had problems with Sun manufactured Anastrozole. I know that the lose of lubricant in joints has to be replaced by doing exercise, and that that exercise results in lubricant in the joints. I once had a knee injury and the physios taped my knee cap in a different position to ‘normal’ and it did the job. Maybe skipping is my next move.