Sorry, I knew what I meant, have edited it, the hospital told me I had to have the tests to see why I react so badly to medicines (I was out cold for 3 days in hospital when they gave me pain killers etc) but my GP says NO! After being so angry and P'd off I think it was the best thing she ever did.
Wicca I find it very strange and downright unethical that a Dr should say the only way one could be given treatment ( for what?) is to have an anaphylactic reaction. People die from ananphylactic reactions.Perhaps I have misunderstood your post?J
I was one of the people who was taken off Arimidex and put on the look-alike pills and suffered. I was put back on Arimidex and continued to take it for about 6 months. I began to feel much better, alas, some of the awful effects stayed with me, feeling so low, fuzzy headed and joint pains (not as severe but still painful).
In December I came to a decision prompted by my GP who told me that the only way I would be given any treatment/tests (re my severe reaction to pain killers etc) was to suffer from anaphylactic shock from medication So, in the bin they went, I feel so much better and my quality of life is brilliant. Every day I have more energy, can now think clearly, my joint pains are going and I have energy to enjoy life.
I do not suggest or recommend this for others, but I will take my chances and be happy and healthy until the big C strikes again - if it does.
Regards, and wishing that you all stay healthy, Wicca
Hi Annie, the active ingredient, in this case, anastrozole,will always be the same but if you compare the full list of 'ingredients' there are usually some differences and these(the binding agents) are thought to be the problem. However when I mentioned this to my GP he said it was more likely down to the release time of the active ingredient that would cause them. I remember reading on another thread about another generic hormone tablet and one of the ingredients was tartrazine! A well known E number that causes reactions.
Hope this helps
Ps 3 out of my 5 daily medications are generic so I'm not just a 'labels' girl lol
Interesting reading this. My doctor just prescribes the generic and the pharmacy gives me whatever they have in stock. Sometimes it has been Arimidex and sometimes something else (Arimidex this month). Reading the packet, it seems that there is no difference in the ingredients and there isn't any coating on the pills, so does anyone have a theory as to why there may be s/es with one type and not another? is it the quality of the ingredients?
Lorraine sorry I was not meaning to imply that you would have s/es with the generic form. Of course some ladies do not and there is every possibiliy that you won't either.This thread started as some of us did have probs. It was very heartening that Arimidex has worked for you for a long period J xx
Josie my Onc wrote a very similar letter to my GP x 2 after my appts in Nov/Dec. Clearly the Oncs are hearing that there are some of us having serious s/e.Obviously they have our best interests at heart in that they want us to comply with proven treatment without awful s/e. At last I have Arimidex every month with no probs. As I am a dispensing patient I never see a script and have to collect my meds at the surgery every month. I had been having to argue the point that Arimidex comes in 28 day packs so as no months in the year have 28 days (except this yr) I always had a 3 day shortfall and was repeatedly told that missing some tabs was OK !!!! finally my new ( male) GP has accepted this and I get my meds as due PHEW. The relief and reduced stress of not having to fight my corner or pay privately for the drug is wonderful and the massively reduced s/e prove the point
Lorraine how wonderful to hear that Arimidex has worked so well for your secondaries over a long period.
Debonair7 if you scroll back on this thread you will see that I was also told by my GP that she could not prescribe Arimidex as the PCT forbade it. I eventually rang the pharmaceutical advisor for the area to try for an appeal, only to be told they could only advise GPs to prescribe generic versions of drugs and it was down to the GP to decide. This is all about the GPs budget hugs to all xx
Thanks for support Nicky,I will give it a go and see if I am one of the lucky ones who has no problems with SE's. I will keep you all posted with my progress.
Hey, Lorraine, that's fantastic news that youve been on Arimidex for 11 years and it's doing it's job 🙂 All this change to medication is worrying and it is all down to cost cutting. I'd see how you go and ask to change back if you feel you have too many extra SE's. I was quite happy to take the generic tablet but over a month to six weeks did notice a change and I then found this thread so I knew it wasn't in my imagination. Luckily I have an understanding GP who change my prescription back and also my onc, who is lovely, wrote a letter to the surgery just so they have it on file to keep me on the branded form. Since changing back all the extra SE's have gone and I just have to deal with the normal ones, ha ha. For us mets girls in particular you do have to weigh up the quality of life issue as, after all, we are on these for life now.
Hi Lorraine - Please have hope - I'm on Anastrazole - Nastroza and am coping very well other than a few hot flashes and abit of bone ache nothing my pet we cannt cope with . I was very dubious when i was first put on it after Arimedex which suited me fine - in fact flippin cross especially as I'd settled well on it and then to muck about with my meds to save a few pounds but to be honest it suits me better. Give it a go for three months then trot off to your GP with a list of good reasons and hopefully they'll put you back on Arimedex - alot of the ladies on this site have done that with good success but lets hope you dont need to - let us know.
Hi, first time ever on a chat site. Have been on Arimidex for 11 years for secondary cancer and am delighted to say have been on remission all this time.I have been notified today by my Dr that I have been prescribed Anastrozole forth with. After reading all the side effects that Anastrazole can cause I am deeply concerned. Arimidex has kept my cancer under control with little side effects all this time and I am concerned that changing the tablet might alter my good fortune as well as make me feel poorly. I have an excellent Consultant and she calls me one of her success stories am I worrying needlessly.
I am on Arimidex (lovely GP) - went to see Consultant last Friday
and mentioned the problems I had with anastrozole and he was very
aware and said that many patients were complaining, and it was
good that I had arimidex
Best wishes to you all - keep trying there does appear to be
awareness at to the problems but once again it is a matter of cost!!!
They do not have to put up with the consequences.
Wishing you all a Happy Christmas and New Year perhaps some of
your GP's will start listening to your problems.
Following a recent check up with my onc, I thought some of you may be interested to hear the following, which was included in his letter to my GP........"I am seeing a succession of patients who are tolerating the generics less well than Arimidex and I am very grateful that you have now kindly put her back on Arimidex".
Yes, we all know that some people can tolerate generics and yes, we all know Arimidex is more expensive but when one considers the wastage that occurs in the NHS, it's a small price to pay for a more decent quality of life.
Good luck to everyone who is having an ongoing fight to be changed back from Anastrozole to Arimidex.
Hazel - the chemists I use said anastrazole is about 3 pounds a month and the arimidex branded pills from Astra Zeneca is about 85 quid a month so yep, quite a difference. When I need my repeat prescription, I have to go to the chemists first to tell them I am putting a request in and they order it specially for me.
Debbie - point the hospital jobsworth in the direction of this thread!!
I have won round 1 - GP has given me Arimidex albeit reluctantly! She said she can only continue to do so until the PCT tell her to stop - she reckons all of Norfolk are on the generic brand (Teva). Some jobsworth at the local hospital said the only difference is some sugary ingredient in the filler or bulking agents of the two drugs and I am the only patient to complain ! yeah right ! She couldn't explain the nose bleeds and increase in joint pain so wrote a prescription there and then - phew ! Hazelmary the Arimidex is much more expensive which is why the PCT's want us on the cheap brands - I understand that the acutal ingredients of the drug are identical but something in the generic brand is upsetting us !!I am interested to hear about the difference vitamin D3 has made to some of you so will be researching that next ! Hope you all fight your corner and get what suits you, cheers, Debbie xx
Is there much of a difference in price between the generic and Arimidex, there is with Letrozole. I may be moved on to Arimidex as Letrozole does not suit me but my GP is keen that I keep on the generic drug.
Just a quick update. Saw my Onc on 22/11 earlier than planned. 1st question he asked was how was I getting on with Arimidex? Told him and also told him about my experience with anastozole. We chatted about that and he was horrified that I had had to get a private script as s/e so bad and GP declined to change me back.Loads of s/e inc. having to see gynae x3 and have scans and poss surgery! At the request of the pharmaceutical advisor for the PCT I had recently managed to get Arimidex again for 3 months and was asked to make appt with GP for a meds review just before I saw Onc that appt was 2 weeks after I saw him. By then he had written to GP and I was copied in too. He made it quite clear that I should have Arimidex. Went to meds review appt fearing the worst but had to see a different and male GP and he was great ( I am quite sure that my usual female GP would still not have agreed) He even showed me that it is written in block caps in purple on my notes that I must have Arimidex. After much tooing and froing over the last 10 months or so I felt that I might still be stuck with some of the worst s/e, certainly my fingers have never recovered but the gynae surgery is no longer needed- relief ++++.Wayne I was put on Adcal D3 at the outset J xx
just going too stick my head in the door here, my maryanne had awfull joint pain using aromasin,arimidex and any other we have had for that matter, the way too get round it is order VITAMIN D3 you want 5000iu twice a day the way i read it what your taking causes a vitamin d defficeny, a i mentioned this too our onc and he said yes he new that would help!!!! after months of pain maryannes been suffering its now more or less gone!!! and when the onc said yes i know all i can say he is lucky he did not get a bloody slap!! love and huggs too you all ,
each day passed is one closer too a cure
Debonair7 - good luck with the GP and really hope you get the 'proper' stuff again. I'm just glad my onc pulled rank on GPs and was aware of differences and believed me. Good luck with the op too.
I see my GP tomorrow to ask if I can go back on Arimidex - I have suffered the increased joint pain, have been having nose bleeds and felt very tearful and depressed ! A woman in the pharmacy at my hospital said I must try other brands first - stuff that - I am facing an op in the new year on my spine tumor so I dont need to be seeing if other generic brands are any better - wish me luck !!!!
Good news techo - a nice surprise!! Perhaps it was a Xmas pressie from the GP???? I hope you have the same reaction to going back to the 'proper' arimidex as I did and all those horrid SEs lessen very quickly.
thought I'd just update this post as the most odd thing has just happened.I am in the same way as put in previous posts in that my s.e have hightened since being on generic anastrozole( 3 months +) instead of arimedex. Anyway went and got my prescription filled and what have they given me.....yeah Arimedex!!! I had to share this with you - I had done all my protestations about being taken off it an had been asked to take it for longer before a review. I had resigned myself to the decision an then I'm just given it. Lets hope I dont get any adverse s.e when resume
I am so lucky my doctor still states that quality of life is the
most important thing and perscribes Arimidex. Try to carry on
as best you can - is it possible to keep a diary of your day
to day problems and see if this will convince them that there
is a problem. I have a friend who is taking anastrozole and
has minimal side effects - but she has not taken Arimidex -
this appears to be the problem now that anastrozole does
not work - it seems to be only a problem if you have been
taking Arimidex for some considerable time (I had been taking
it for over two years and my body has grown accustomed to it
and the way the ingredients are presented. This is what
they seem to be overlooking.
Best wishes, hope your symptoms are bearable for the next couple
Hi Techno , your onc may be right in what she says ie all the active ingredients are the same , but are they even collected from the same source or even the same country of source ?
Phamacists in Spain have been told by the government that they have to prescribe the cheapest brand of all medicaments , they know that tis means that some spanish pharmaceutical companies may go out of business but they say this has to be done.
The pharmaceutical companies are saying that many of the ingredients in the cheaper brands have been sourced from India and China ,
No problem , so long as you trust Indian and Chinese quality control
Can I ask as it is new to me, I have been on Arimidex for 4 months and just the last couple of weeks my feet have been so sore! I put it down to walking as we did go nuts and I bought some new clothes (an extra two stone will do it!) so left it there but I have felt a bit off today and done naff all but the feet, they hurt so much and are quite red on soles?? I haven't done anything so can't figure it out as am also on 9th Herceptin so hard to pin down where this is from?? Any ideas would be appreciated Em x
Hi -my update on this topic
Well my wait is over and I have seen my consultant. I managed to explain how in the past 7 weeks I have felt my s.e geting worse after having almost 10months on Arimedex and now taking generic Anastroloze. Every s.e has hightened but reading recent posts yes my mood swings are awful. I know I'm behaving unreasonable or I feel weepy and the next its ok but mostly I remain a 'grump' for longer.Anyway we had a long chat about it all and she has asked me to continue until the new year to see if things settle down - and yes the tablets are exactly the same apart from there coating but of course Arimedex is more costly.I reluctantly agreed to carry on. She has given me some alternative thoughts to ponder on in the meantime. I can have a rest period from the drug to let my body normalise or she could chnge my path of treatment to Tamoxifen or Letrozole although she says that anastroloze is the best course for me in her opinion. I will experience similiar s.e to a greater or lesser degree either way.I am up to giving it a go as for sure I want the best result from my treatment.Will let you know how it goes.Thxs lizcat,rossco,libby2010 for your input
Hi Lazydaisy1, reading your post and side effects I could have written it myself, I can honestly say I am feeling all what you are describing. I think sometimes I am going mad. My poor husband too, a word a look just sets me off, and he has been and still is my rock, so why do I carry on like this? I know I could go to the doctors but it's not something you do like to admit to, I seem to cope and be ok in front of others, it just isn't fair is it. I have been on Tamoxifen then only had one course of Arimidex then changed to Anastrozole. Then to top it all pain in heels, toes, wrists, fingers etc, I don't want to appear like a hypo so try to carry on, hope it is going to be worth it. I have been on this since April 2011. Hugs to you and all of us junieliz
I've been on anastrozole since May - previously been on Tamoxifen then Arimidex and have managed quite well except......... flippin awful mood swings - such anger and so quick - flash temper so mega charged it frightens me . its def. getting worse rather than better - really try yo keep it in , bottled up as I know it must be hell on earth for my husband, but then come across as quiet and sulky cannot flippin win. It takes very little to spark me off -a look or a remark . None of this is easy to admit to as it really shows a weakness of character. I have only been like this for about three months and it def. getting worse in strength.
I'm putting it down to Anastrozole ,am seeing Onc later this month - if I'm not locked up before hand!! Might ask for a 'holiday' to see if that makes a difference. Quality of life at the moment with these mood swings is nil. Most of the time I'm great - happy and moving on but when these hit Life is rubbish for me but mainly for my husband.
Hi Hazelmary I too started to have side effects when changed to generic version of Letrozole my pharmacict said that sometimes these things happen so my g.p now writes script for Femara and I have found aches and pains gone also I was getting headaches and these too have eased. ask your gp to prescribe femara for a few months to see if you notice a difference jmr x
I have been on Letrozole for 2 1/2 years after 5 years of Tamoxifen and apart from a "clicky" finger have never had any aches and pains so I am a bit worried about this report in the Lancet. I do have other problems but not aches and pains.
I am on the generic version of Letrozole for the first time and the side effects that I have have worsened(sore mouth etc) but as Femara is so much more expensive than the generic I don't know if I will be able to change back (My pharmacist reckons its all in the mind),but I have checked the ingredients and there is a difference.
I suppose it might help , I think it would depend on what Stage / grade your dx was and just how debilitating the s/e´s are . Also , do they just go when eventually you are able to stop taking the medication , or do you stop and the s/e´s remain with you .Not always easy to justify .
I think I posted on this thread some time back. I read this on the US breastcancer.org site and I think it refers to a Lancet study....
"Joint pain from taking an aromatase inhibitor can be troubling. But a 2008 British study suggests that women who experienced joint pain while taking hormonal therapy medicine were less likely to have the breast cancer come back (recur). Knowing that this side effect might indicate a reduced risk of the cancer coming back may help some people stick with treatment despite the side effects."
Helps me put up with the crxp. Saying that I'm about to try acupuncture next week.
Had a routine 3 monthly appointment with my onc today (who has been really good with me over last two and half years) and told him that I am really suffering joint pain on the generic brand - he just shrugged and said, "well its still doing its job well" (my tumor markers have dropped back to normal)and turned back to the computer screen ! I was stunned into silence ! I guess I'll have to shut up and put up with it for now - will give it one more pack to see if things settle and then I am going back to GP!
As I said in my previous post, the penny only dropped when reading the posts re arimidex that my se seemed to be caused by the teva generic anastrozole. Called in at my surgery this morning to have flu jab, but had a word with the receptionist about the probs I have been having. Just had phone call from surgery to say that my new prescription for arimidex is waiting at the the chemist for me to collect this afternoon. I feel so relieved and hope that most of the se will now disappear and I can now concentrate on trying to live a normal life.
Hi only just catching up as been on hols.Techo so sorry to hear of your probs. I agree with Lizcat some of us do not tolerate the generic version of anastrazole very well. Have to screw up my courage again this month 3rd month in a row to go to surgery to ask that they order A-Z Arimidex for me, 4 days before I need it, they do not seem to have an advanced ordering system, plus they say that it is a month supply, NO it is a 28 day supply, which does make a difference. So many hoops to jump through as I am at a dispensing surgery and I never see the script. This is the last month I will do this if it is not ready this time I will be making a complaint and asking for the script to take to a pharmacy.Been on hols and was able to enjoy it on Arimidex.Need to watchmy step methinks as I see from the news that some patients are being put off their GPs lists according to the news. Hope not as I have been with my GP for a very long time and have only had probs because of this.
The s/e of anastozole kicked in very quickly for me so knew there was a difference.
Lizcat thanks for your supportive comments. At least I know am not going mad. Love J
I was prescribed Arimidex 18 months ago and only had slight SE to start with, hot sweats and aching joints. I only noticed about 6 months ago that the generic anastrozole had been prescribed, without any notification to myself, but didnt query the reason. I just took the tablets. Since about 4 months ago I have had unpleasant SE including exhaustion, anxiety, feeling jittery,light headedness and insomnia. Having read posts about tiva I am convinced that it is the cause of my problems. The penny never dropped before now. I am seeing my oncologist eary November and will ask to be put back onto Arimidex, but I will also phone my GP tomorrow to ask if he can prescribe Arimidex again. Will keep you posted.
techo - that's bad. I lasted 3 months on the Teva lot (no idea how I managed that long!!) and what you describe is exactly as I was. Hope the wait is finally worth it and you get the same almost instant relief as I did back on the originals.
Just catching up after my hospital appointments. No futher forward with changing back to arimedex - my consultant is on holiday an I need to go through her to change back. So week 5 on alternative and s.e no better, in fact overall outlook I feel generally worse. Have emphised to the clinicians an nurses this week about such but have to go through the main person, so to speak before any action can be taken. So another 2+weeks and I have my appointment.S.e are worse in so much that I have had some time out from work and my mind is really 'confused, forgetful' in so much I am amazed that I can put this comment together.On that note I will sign off with maybe better news next time.
Great news an well done to all of you who have not experienced a change - I really wish I was the same
I am shocked and also feel a little foolish. I was on Arimadex, had been for about 8 months and then Boots changed my prescription. I only noticed because the packet changed to pink and the blister pack was different. Haven't been on the forum for quite some time and when I came across your posts I checked and am now taking generic Anastrozole Teva. I must say I haven't noticed any difference and maybe feel better than when on Arimadex. I just think it should have been pointed out to me at Boots to allow me to make a choice. I have a good relationship with them and will pop in today for a chat. I was diagnosed on my birthday Jan 2010 and am doing ok.Got lympho which I am distressed about but plodding on though arm drives me bonkers. I wish you all well and try to keep strong. I think I have the capacity to shut down my brain and pretent this never happened.
Lots of Love. XXX
I've been given another generic brand too - 'accord'. Pharmacy delivered to my door so it was too late to say yea or nay. Will try them and see if I notice anything untoward.
I started this thread back in March when I was changed from arimidex to the generic version made by Teva. Fortunately I haven't had any problems on the Teva brand so have been quite happy to carry on with this. Today, I went to Boots to pick up my prescription and they gave me yet another different brand, which I think was Arrow. Now I have been lucky so far but didn't want to chance another change and asked if they would order some of the Teva brand in for me. Boots told me this was not possible unless my GP stated 'Teva' Anastrozole on the prescription. As I didn't want to chance yet another change of brand I refused the Arrow brand at Boots and took the prescription to another pharmacy and was very surprised to actually be given Arimidex again. The pharmacist agreed that it is best to stay with the same brand you are used to. I just hope Arimidex is still ok with me now!!
Sorry to hear that some of you have had so many problems on the generic versions. Good luck to you all.
Lizcat and techno
I was advised to complete the course of anastrozole by a Bc nurse
as it was possible the side effects would gradually wear off and be
acceptable. By the end of the third week I was a terrible mess
could hardly walk down stairs and quality of life was unacceptable.
I was very lucky my Gp was on maternity leave and not due back
for a couple of weeks and was advised to speak to the nurse at the
surgery, she was most sympathic and changed my script there and then
and had to collect that p.m. Am still on AZ arimidex but the chemist
where I obtain my scripts from has to order it in specially therefore
there collect my script from the surgery and I then collect on a
specified date - so far this is working absolutely fine. No S/E
it is amazing the difference a good Gp makes. Mine does make
it very obvious that quality of life is very important and I feel lucky.
Techo - my onc referred to the generic version as the 'fake' ones before quickly saying, well the generic ones rather than the Astra Z ones - you know what I mean !!! She's great. I was concerned at first that I was being over-sensitive re the changes and thought my body would adapt but it didn't and then I read this thread and knew I wasn't imagining it. It's only come to light recently cos of the generic ones now being available under that licensing thing.
You are not imagining it !!
Thanks Lizcat & Wicca
Am not a push over but wasn't sure if I wasn't giving the change a chance.You kind of get the impression you are being humoured when you raise issues about an alternative drug that they say is exactly the same. Appt. to see my consultant next week so will keep forum posted. No improvement at present so can't come quick enough. yes agree that my clinical team should have asked to see me and not by an unknown at the end of a phone.My faith in some of the system is being challenged.
I think I would be somewhat anxious about the hospital clinicians medical training, had your onc medical team discussed and approved this? Harrassment by phone, giving out medical advice without seeing you. Plus is it true about you being the only one in the County, are the rest of us so special and rare, me thinks not as it only seems to be a few that are escaping these awful side effects. For what its worth me thinks that if I was in the same position I would be phoning the above help line then putting pen to paper to the Medical Council and MP's - this type of phone call could seriously damage some more timid persons health and life expectancy!
I am from Cumbria and on Arimidex.
I do hope you are feeling better soon and get this sorted.
Technician - get them to change it back asap. The SEs altered within a couple of days both when I went on to the generic form and again when my onc swopped me back. You may have to be forceful about it but if the SEs keep getting worse, you will be at the end of your tether. Been there, done that!! As I mentioned in an earlier post, my onc wasn't surprised about the change in SEs and was more than happy to insist GP prescribes the originals.