Just geting upto date with this post as I had some time back had issues with my GP / chemist giving me anastrozole instead of arimedex with no notice. It was reversed so no probs. A few weeks ago I was contacted by a hospital clinican on the phone who was somewhat anxious. She told me that I was the only one in my county left on arimedex and that percentage wise there would be no difference to my s.e ( hot flushes, aching joints etc)I did ask for some honesty and that the reason to change was cost which she agreed was a contibuting factor. Anyway I agreed to swap and give anastroloze a go. Am now in week 2 and all my s.e have been hightened and what was previously doable is becoming not. How long should I trial this alternative drug? She stated I could ask to be put back on arimedex if this occured but would need to go through my consultant.Welcome any input.....
Libby 2010 - I also think it's an appalling situation. I too work for the NHS and I'm sure like me, you see money being wasted every day. It must be so stressful for you to have to fight for your prescription every month. I hope you are successful in your plight.
Libby 2010 - can't believe the problems you are still having. It's unbelievable and I feel so angry on your behalf. Fingers crossed someone will take control of the situation and you'll get what you want and need.
Hi just another update after the long battle to get Arimidex and just before BH week-end when it was not available and being told that it did not matter if I missed a few tabs !!!!!!Had I been an insulin dependent diabetic would he have said this? Finally got A-Z Arimidex after my private supply ran out Went back yesterday and told surgery too busy to order it in!!!! and in any case was too early for a month script (but it is a 28 day supply )come back later still not available and they are very disinclined to let me have a prescription to take elsewhere come back in the morning ie. today still not available- come back later when I told them I would def need a script to take elsewhere if it was not in got a 'glare'it was available this evening felt I needed it sorted before the week-end and am on holiday next week anywayI work F/T and cannot keep going back this often for my script.I am currently drafting a letter to the practice manager as I feel that it is unacceptable to have to face this stress every month and keep jumping through all these hoops to get a drug which a) keeps the cancer at bay b)has manageable s/e and keep on doing this for 4 more years c)prescribed by Onc.Yes I do know that the NHS has not go a bottomless pit of money I work in NHS and would take generic version if I could.
I have considered changing surgerys but I live in an hamlet between 2 towns and am way too far away from one to get registered with a GP there and the next nearest doesn't take patients from as far away as me and I ave been with this surgery for 30 yrs and they have been great up until now. Need to mend bridges me thinks. Love and hugs to all who need them. J xx
I also switched back to Arimidex from a generic one and noticed the difference, not as quickly as you did but definitely felt better after a week or so. It's a tough call about the spending issue but, as our oncs like to say, we do have a quality of life issue here as well. When SE's get so bad that they do affect our quality of life I think we should be able to take the version of the drug that is best for us.
Quick update - had my 3 month check-up with onc today and she asked how I was on the 'original' arimidex after she had written to GP to tell them I must have it. Told her I'd seen improvements within 3 days of the switch back and she wasn't surprised. She said it proved that the generic version can give awful side effects that must be down to the extra ingredients. I'm to stay on Astra Zeneca's version for as long as it works now. Just glad onc doesn't think I'm imagining or exaggerating the side effects and is aware that swopping brands can have an effect on people.
Hope you are all managing ok on whichever brand you are on. If you are struggling and believe it to be down to a change of tablets, insist on going back to the originals.
Re rossco's point; I have been on Arimidex for nearly three years and started on the generic version 6 weeks ago with no problems- as I suspect is the case for most people (my side effects remain the same- hot flushes.)
I am really sorry for the people who have had problems changing over and feel they should not have to go through a lot of hassle to convince their GPs that the new version is disagreeing with them. This is just not what we need when we are trying to get on with our lives and put BC back in its box.
But .......on the wider point - I'm sure we must all be glad that generic versions of drugs become available to reduce the huge NHS drugs bill. I feel really strongly re all the wasted money in the NHS;
J have just read the previous posts so pleased that you have got
your way - but what a battle!!! I also have to have my
Arimidex ordered by the pharmacist as they only stock the generic
version. Hope that your life is now getting back to normal -
I began to feel better within a few days after taking Arimidex
it was quite remarkable the difference it made.
best wishes Pat
I have a friend who was diagnosed earlier this year and was
given anastrozole - and has been taking it for three months now
and has no side effects at all. This leads me to believe that
if you have been taking Arimidex for some considerable time your
body is used to it. I have been taking it for 2years and eight months
less one month on ~Anastrozole- which was sheer hell' The posts
on this site indicate that we have all been taking arimidex for
some considerable time before being changed to the generic
anastrozole and this could be because our bodies react to the
Here's a weird thing -
I was given the branded Arimidex last time after being on the generic for a few months (chemist must have been out of generic) and since taking the Arimidex the pain and stiffness in my fingers has definitely got worse than it was on the generic.
The mood swings which I experienced on the generic, however, seem to have gone.
Ladies thanks for your support. Well said Liz that there is a difference. I had proved this for myself having paid for a private script but obviously I cannot keep doing that.Am relieved at least for the time being.J xx
J - I am so pleased you've finally got what you needed and should have been able to have without all this stress, strain and running around. I hope the side effects of the generic ones wear off as quickly as they did with me.
I've just put in the script for my second lot back on the originals and have to let the chemist know so he can order it direct from AZ for me. The difference has been amazing so don't let anyone tell me either that no-one notices a difference between the original and generic versions or that it's all in the mind!!
Let us know how you get on. I think it's important that as many of us as possible put our experiences on here to reassure others they are not alone or be fobbed off.
It is awful that you have had to go through all this additional stress and inconvenience J but glad you have at last got the outcome you wished for.
Well just an update on the sorry Arimidex saga.
Had spent a fretful week-end and really did not have much sleep last night worrying about all this.
Rang pharmaceutical advisor at 8.15ish this morning thinking that I would be leaving a message but one of them answered.
They had spoken to the GP practice and promised to do so again when dispenser on duty. Told them she started at 8am. Phoned her myself to tell her that she was going to get a phone call. By then the practice manager had also been galvanised into action too. Not sure what got the ball rolling.
Of course it is not for me to seek permission from the PCT for a drug but for the practice to do this as the PCT pointed out. I took all their names and e-mail addresses and followed this up with and e-mail copying all of them in with dates etc, identifying how difficult this had all been made.
I knew that the drug had to be ordered by 10am to be available today at the surgery dispensary, and it did not go down well when I said if not I would have the prescription to take to a pharmacy were I know that they have some stock available. Upshot got a supply this afternoon and I have been assured that I will not have to jump through all these hoops again.Will be there a week prior to needing next script. So help me if anyone else tells me these meds are the same they will be asked how they got on with anastrozole.
It might also have helped that I said I would have to seek another GP as they were not allowing a patient who had had BC a drug she was told she needed by a cons Onc, and had manageable s/e. Only person who does not know anything about this is my own GP as she only works on Weds. I feel very disappointed in her as she clearly lied to me in the first place.Fortunately I hope not to be seeing her again. Many thanks for all your support ladies. J xx
Oh Jackie it is so unfair that this is still going on. It's not as if you didn't give the generics a try. You could understand if you had just said I don't want to change but no, you did try to get on with them. You must keep fighting them. It is not right that you have to pay privately for what we can get on nhs prescription. As you know my gp put me back on arimidex after my se's increased on generic anastrozole. Do start writing those letters and good luck with your fight.
It just doesn't seem right if a medication brand change causes so much distress and you hit a brick wall trying to get original brand. In my case I am fortunate. My arimideex started 5 years age, prescription has always read anastrazole-I have always received arimidex and still do. Makes no sense.
Thanks Kris and all you gals.BC is bad enough but having to fight like this for a drug which works and has not got too many unpleasant s/e .If one more female GP tells me that they are the same so help me !!!! J xx
Hi just popped in as I thought I had had a mega rant (unreasonably)last evening thank you Liz,Pat and JWStaff after sleeping on this I will def be sending e-mails to all concerned they are on my radar/global internet.Might just copy in my Onc and Theresa May.So thank you Ladies for helping me to realise that I am not being difficult. J xx
Oh Jacq it´s so unfair is´nt it ? It´s bad enough having BC , but when the doctors start messing around with your tablets it´s just incredible .
I understand wheat Topsymo and Broomsticklady are saying , but taking a generic paracetamol or ibruprofen when you have a headache is very different to having to take a much different class of drug daily for five years , in fact I´d go so far as to say that there is no comparison .
I´m very pleased that for them there are no s/e that cause them great pain or distress , that is what we would all wish for .
I agree that with age we can all expect some aches and pains , but some people ( myself included ) go through the menopause at 40 , why would a lady in her 40´s or 50´s expect aches and pains ? I´m just 60 , and I certainly expected before BC to be fit and active ,( I walk over an hour a day cross country with my dog ) Perhaps at 70 + I will take it as normal .
I do not think it´s right to deprive any woman of a drug that she has been on for some time and is comfortable about taking , just to change her to a cheaper version .
By the way , did you know that one of Britains biggest pharmaceutical companies is now going to set up production in Iraq ?
J - the way you are being treated is appalling - as well as feeling
terible on anastrazole you are having to fight to get it changed
back to something that at least gives you a reasonable life. You
are obviously going to have to fight your case - can "PALS" help.
I have dealt with them in the past but this was a complaint about
someone who was in hospital. I would contact Theresa May she
should also be concerned about her constituents - she must have
a Secretary or someone who could point you in the right direction.
J - that is so incredibly appalling. Make a formal complaint. As I said before, I thought I had a bit of trouble getting back to branded Arimidex but your situation more than takes the proverbial p$ss. It is beyond belief that the GP says it's ok for you to miss a few doses - they wouldn't like it if it were them in your shoes. I would have burst into floods of tears there and then the way I felt on the anastrazole - or just lost it completely.
I know it's all down to cost but they surely realise that you need these pills and in the long run it will actually save money and what about all these prescriptions they dish out willy-nilly to people who never take them??? Or other groups in society who go to the front of the queue and get drugs without problem on a long-term basis when they have never worked etc, etc?? Think you guess what I'm getting at here - it's my soapbox again.
Sorry I can't split my prescription with you but mine are monitored and I have to tell the chemist I'm putting the prescription in so they can order direct from Astra Zeneca. All wrong, so wrong.
I am feeling so fed up. Called at surgery this am for my meds told not ready was on way to work, come back after 4pm. Called on way home from work and anastrozole only available. Queried this with dispenser and she went into see GP who re-iterated that it was up to PCT YES YES I know that, Allegedly the practice say they have not heard from pharmaceutical advisor,she pa, tells me that she has spoken to them, they say they cannot go ahead without her say so!!!!! GP actually sent a message via the dispenser that it would be OK for me to miss some doses while they get this sorted out!!!!! Staggered out almost in tears. It’s Friday and am worn out work FT in NHS !!!!!!!
I will be e-mailing the lot of them on Tues morning. Someone, somewhere is tellling fibs couldn’t care less who I just need meds to keep at bay my 100% hormone receptive tumour without too many difficult and cripplingly awful s/e.
AND I am now so seriously cheesed off I might just write to my MP but as that is Theresa May I think she is a bit busy with rioters and the like sorry I don’t normally rant but this is so important and I am becoming worn out with the struggle ,all I want is a med that works and has manageable s/e..OK rant over thanks for ‘listening’ J xx
I was put back onto Arimidex - after 1 month of hell on anastrozole
my GP said that there was no problem with going back to Arimidex
it was the patient's welfare that mattered - there are some considerate
GP's out there. I considered myself to be very lucky. It can happen!!
I am sorry to hear that others are struggling to get Arimidex. It is deeply unfair that some do and some don't.
I think I have got to the bottom of why I am getting Arimidex again (after only 1 prescription of generic anastrazole) - one of the female GPs in the practice has had BC. I suspect she has tried the generic and thought s*d this!
Hi everyone, I have at last had a letter from my GP after they had their PCt meeting and I am back on Arimidex!!! So its worth keep trying I think. Good luck to you all and hoping you get the same!
Hi just to update I have been holding fire as after the PCT pharmaceutical advisor told me that the GP practice would let me know whether they would prescribe Arimidex (AZ) they didn’t (worried about this) so next week I am due to collect my repeat script.I still have some very expensively acquired Arimidex and I know this real Mc Coy has made a really big difference for me.I will be following this up if The real Arimidex is not made available.I do so hope that it is.Fighting for drugs which work and do not have horrendous s/e is so tiring. AND I work in NHS too so my going off sick would surely cost more?
Norberte hope you feel OK soon enough to post ? Hugs and Love to all J xx
I posted a few months ago to say that most of the time i have received Arimidex, but not always ... now i have received a letter from the GP practice to say that from now on it will be generic anastrozole. I'm going to keep a close eye on the se's - hopefully will be fine. But clearly, this is now the practice across the country, i guess. Mo
libby - sorry only just seen your reply. Is there any way you can take it further with either surgery or onc???? Tell them how desperate you are. This cost thing is dreadful when you look at the amount of money that is wasted on unused pills etc being dished out willy-nilly. Another of my rants!!
Hope you can get somewhere and get what you need on prescription.
Hi Liz as I am not due to see my Onc until Jan 2012 I sent him a message via my BCN. The response was that whilst he ( Onc) can recommend AZ Arimidex to my GP it is their budget and therefore their final decision.Interestingly the dispenser at my surgery had told me that as there were 2 new partners at the surgery and my GP has partly retired it is the new docs who have vetoed the drug. I really don't care about the reason I know I could not cope for another 4 yrs as I was. Thanks for taking the time to reply. J xx
libby 2010 - can you explain the situation to your oncologist or someone in the onc dept? My GP practice would only go back to the AZ version for me after onc had sent a letter to them telling them I had to be given it rather than the generic version. Difference has been amazing (see my post on last page).
After 3 requests to my GP to have Astra Zeneca Arimidex having been on it for 11 months( I had been paying for a private prescription after a terrible time on Teva anastrozole) she refused and said her ‘hands were tied’ as the pharmaceutical advisor of the PCT had had a meeting with all the GPs and told them quite categorically that they were to prescribe only generic anastrozole. So I rang the advisor to be told that was not what she had said, I was asking her if there were any circumstances that due to numerous and severe s/e I could have Arimidex again. She told me she would speak to the practice. She rang me the next day to say the practice would ring me. That was 2 weeks ago and still no call. Nor a letter chucking me off their list. I will follow up at the beg of next week. My private supply of Arimidex is due to run out late next week and I need to get some more. Heres hoping, as the cost is crippling but so where the s/e.
Am a bit concerned about Sheil’s post with the quote that increase in s/e mean it works better.
Hi Broomsticklady- good to hear from you: I tend to share your view -as you will see from my original post!
After 2 years + on Arimidex I have just had the first dreaded -TIVA script - so maybe I will have to eat my words- we shall see.
Like everyone else I have had hot flushes but have found these have moderated over time- and sometimes they seem worse than at other times - and for no particular reason.
I also suffer with joint pain in my shoulders and knees for which I take paracetamol and co-codamol- but I had joint pain long before BC; arthritic pain is SO common in people of our age (post menopausal) - and sometimes my arthritis seems worse than at other times . My knees are painful at the moment- if I'd already started on my 'new' drug maybe I'd be blaming the change of drug on that..........?
I will keep you posted!
Hi Topsymo - that's me!! I really feel no worse or better than I did on Arimidex - my knees are pure hell but they were then too, so grin and bear it - or rather cocodamol, ibuprofen and tramodil...
I must confess to posting on this thread much earlier, questioning whether those people who wanted Arimidex proper thought twice about buying themselves non branded paracetamol, ibuprofen etc, but my post was thought inflammatory and deleted so don't know how much longer this post will survive!!
Would be interested to hear from anyone who has been put onto the generic Anastrozole and who ISN'T experiencing any worse side effects then they had on Arimidex
Letrozole is now off licence mypharmacy was all 'gung ho' to give me the generic which I refused as I have enough SEs and do not want to take the chance of developing more!!! Thankfully my GP changed my prescription to read Femara.
That was just like me Nicky , and i did´´nt know it would be any different on the real Femara , thought they would all be the same , So very different , it was just much better for me .
I did not feel like "ME" on the letrozole , my head seemed to have been taken over by someone else , like nicky , I was panicky , nervy , so many nasty s/e .
If you say to your doc or onc , they say "oh no, they are all the same ". Well unfortunately they are not , and ladies who have had problems know this to be true . If only they were , we could all be chenged to the cheaper ones saving everyone a fortune , cos if i want to stay on femara , I will have to buy it . I definately won´t be taking any more generics , don´t know why they don´t like me , but they don´t , time is a precious quality , I don´t want to waste it feeling awful , aftre BC I want to embrace my life
I have been taking Arimidex for 3 years. I had the usual side effects,hot sweats, stiff and painful joints and sleeplessness which were manageable. Four months ago I was given Anastrasole by Teva. I had no problem with this, if it saves the NHS money and is effective,thats fine.
In the first week I noticed very little change but gradually the side effects became increasingly worse. These included:-
Awake until 4 or 5 am most nights
Dreams and nightmares- I even fell out of bed, hitting my head on the bedside table... the first time ever!
Severe cramps in legs. constant exhaustion.
Feelings of extreme anxiety and panic. Very tearful and jittery. Unheard of!
Hot flushes - up to eight an hour. Burning sensation on face.
Very high and erratic B/P, rapid irregular pulse - very frightening.
I watched my diet and exercised daily, I don't drink or smoke. It continued to get worse. After two months my GP changed me back to Arimidex. Three weeks later all the awful side effects had gone!
I suggest anyone else experiencing side effects notifies their GP and chemist,in order to help others in a similar position. I hope this has been helpful.
Unfortunately , I now understand that "Femara" has just come off licence in the UK , so the chances are that anyone now on "Femara ", will be prescribed letrozole in the future . Will be interesting to see if the "Femara " ladies experience the same problems on the generic form as do some of you .
I was initially prescribed Anastrazole/Arimidex in October and did not have side effects until Jan/Feb which became progressively worse. The penny has only now dropped that I had also been given the generic Anastrazole no doubt due to cost effectiveness of the Pharmacy. When I saw my surgeon in May she immediately asked about my joints and hands and when she saw my swollen hands changed my prescription to Letrozole/Femara - not perfect but much better. No severe nocturnal pain keeping me awake. Side Effects abate quite a bit during the day.
Having just read the whole of this thread I'm now extremely worried. I am told I'll get Letrazole but as I already suffer with a dodgy knee, left hip and both thumbs and at 59 yrs would like to remain active and enjoy my family. After this very crap year would expect our gps to be more supportive. Will fight from my corner if I have to. My hospital(rad) onc is very good will keep her in the loop as and when. Chris
jackwagstaff, msmolly, BessieBoo - Many thanks for your comments re the SEs. On Letrazole my SEs have not gone but are no worse. It was also suggested to me by my surgeon that the effects often subside or is it that we just get used to them?
Well I finally got the prescription from the GP that specified Arimidex by Astra Zeneca about 10 days ago and am happy to report that the anxious attacks/nightmares/insomnia etc have gone. Woo-hoo!!! Hot sweats still bad but they were anyway.
I'm glad I persisted in getting the old tablets back and would say to anyone struggling to get in touch with their onc team and explain the situation and ask them to write to GP to insist on branded arimidex. It was the only way I could get it.
I have now been back on Arimdex for just over two months and
thankfully am now almost back to normal. But, I have
now been disganosed with osteoarthitis in my left thumb joint
into the wrist, the symptoms just seem to keep on coming.
I was very lucky my Doctor said that quality of life was far
more important and changed me back to arimidex without any