I was interested in this post as I'm on Femara/letrozole and getting fed up with joint pain/stiffness and hot flushes side effects. I've been on this for about 4 months now and no sign of them improving, but onc said give it another couple of months as SE's often wear off eventually. But on my searching around trying to find out stuff I did find this on Breastcancer.org......
"Joint pain from taking Arimidex 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 women stick with treatment despite the side effects."
So does this mean that feeling like a 90 year old is a good thing? As Lulu said - BC - the gift that keeps on giving!!
Hi everyone, well still not back on Arimidex, and i have had 4 different brands now, this month its Teva for the first time. I have been to see the female doctor again, and still waiting for decision, is this whats called "post code lottery"? Glad that so many of you are back on Arimidex and feeling better.
Hi This is my first time posting a comment..I have been on Arimidex for 2 1/2 years and in February they changed my arimidex for teva which i didn't have a problem with( if the NHS can save money Great) But my joints became very sore i have arthritis in my left hip, ribs on both sides after radiotherapy and my back and neck so i thought that this was just a few bad days but it became worse and all at the same time.after 3 months of being completly crippled even breathing was painful sleep was impossible, to walk to the toilet was a dread i couldn't make out where the pain was at its worst my whole body was in agony.after many visits to the doctors i suddenly thought the only thing that has changed was my tablets.I was lucky i got them changed straight away i have now been back on arimidex for 8 weeks and i am still sore in my hip and one side of my ribs I cannot wear a bra yet.I feel so angry i have been in pain so far for 5 months and although i feel i am getting better i dont know when it will end.
Hi Libby, glad you are back on Arimidex, wish I was too! I am waiting now for my doctor to discuss at the next practice meeting if I can go back on it, but am not holding my breath. My hot flushes are getting worse (went through the change in my 40s before went on HRT, then had symptoms again when first on Arimidex 3 years ago, and now again!!), the pharmacist never did call me!
Just as an update I saw I last posted here on 9/6. Since then s/e very much worse. Developed joint aches in hips, back and pelvic bones ( can hardly sit down ay times)and fingers far worse Night sweats x 3-4 per night are awful feel like I have had a bucket of water thrown over me and need to get up and change nightie and bed.I was over sleeping every morning as so tired.Hot flushes lasting all day leaving my skin feeling like I had very bad sun burn by the end of the day. Then to top it all had PV bleeding.I explained all this to my GP and she said I had to be logical about it- I interpreted this as being told this was all in my mind.But despite my being relatively unconcerned about the PV bleeding she referred me urgently for a pelvic u/s and gynae appt. This came in 2 days and appt 13 days from GP appt have all that to look forwards to on Tues.I had just got back to aerobbics, swimming and continuing to learn to play golf and walking. All that stopped and I was dossing around the house every evening when I got home from work and for most of the week-end and still exhausted on Mon morning. Goodness had I got a young family not sure what I would do.Perhaps I am less tolerant than some of you, but all these s/e are debilitating and a constant reminder of BC and after 11 months with just nausea on Arimidex I feel that there is a connection with the generic Teva version.Meanwhile I have been lucky to get Arimidex privately and am hoping that the s/e will be reversed.Good Luck to all of you. J
Ps should have added that I have the BCC leaflet on menopause s/e and do meditation/relaxation/cold flannels during the night/reflexology/ ordered a Chillow etc etc to try to help
I saw my GP the other week for something other than BC and mentioned that I wasn't happy being on the generic form and he has now changed my repeat prescription to 'Arimidex' from 'Anastrozole'. I start them on Monday so hope that the few extra SE's I've had since being on the generic form for a few months stop. I had gradually noticed a few changes to SE's and hadn't put this down to a change in Arimidex until I read this thread and noticed what I was experiencing was very similar to how others were feeling. I therefore don't think it's psychosomatic but we'll see!
Saw onc on Thurs for routine checkup and mentioned worse SE on generic form and she asked if I'd asked at the chemists and GP surgery about sticking with the original. I told her I had but they said any change/specific drug brand had to come from the hospital ie. her. She was surprised and asked if they'd given a reason and wasn't surprised when I said cost so she's going to write to GP to ask them to prescribe the original version in the future assuming it is the change that has worsened SEs. She wasn't impressed.
I saw my onc last Thursday and I told him of my increased s/e from the generic Anatrozole. He told me that he had many such complaints and didn't know the reason why the s/e increased and to ask my GP to swop back to Arimidex. I have almost a month's worth of the generic left which I'll take then hopefully will have fewer hot flushes and less joint pain.
Interesting that the generic version seems to be affecting hand joints. This is exactly what I have found. Saw my oncologist yesterday who without any prompting said he would write to my GP requesting that I go back on arimidex. If I had my wits about me I would have asked was he seeing a lot of this but didn't think about it at the time. I was so surprised that I didn't have to fight my corner.
I had been taking Arimidex for 4.5 years and was finding the side effects manageable. Like everyone else, my prescription suddenly changed to Anastrozole - two different manufacturers in two months. Side effects increased - dreadful night sweats, which resulted in lack of sleep and "fog" brain the following day, constant nausea resulting in lack of appetite and generally feeling under par. I went to my GP and said that whilst I was fully aware of restraints in the NHS,I felt that my quality of life was being compromised by these increased side effects. I told her that I had started to skip the odd tablet and that I was thinking of asking my onc if I could stop taking it altogether. She tried to tell me that the generic version is exactly the same but in the end agreed to prescribe Arimidex to see if the side effects improve on the condition that I see her for a review at the end of the month. That was four days ago and already I am noticing a difference and feel more like my old self.
I actually work for the NHS and see money being wasted all the time so none of us should be made to feel guilty asking for the more expensive drug if it gives us a better quality of life. In my job I have learnt that if you don't ask, someone will always push in front of you and get their own way. Hope this helps some of you who may be worried or scared about asking their GP to change back to Arimidex. Cadi, I'll join you in that glass of wine!! Jo
Cadi that is great.
From July 2010 I was on Arimidex got nausea fairly quickly and poss slightly sharper hot flushes but was coping.
Last week I was given anastrozole when I questioned this the dispenser said as the GP practice had been 'taken over'by 2 new Docs my own semi-retired lady doc could not prescribe this for me. I then got an e-mail from my doc saying it was due to PCT 3 line whip.
Bottom line I can hardly move my fingers after only a few days on anastrozole,other joints aching legs,pelvis,shoulders ,armms.Night sweats awful,flushes during the day leave my face like I have really bad sun burn and nausea far worse, this is seriously distubing my quality of life and I work full time so am really struggling. J xx
Just returned from my GP and she has changed my prescription back to Arimidex. I am so pleased that I might just celebrate with a large glass of wine.
Have now been back on Arimidex for nearly five weeks - the joint pains
have nearly all gone just knees - but these were the worst on
anastrozole - but there is lots of improvement just a dull ache
mostly at night when I have been busy all day. Mood swings have improved. Feeling like a human being again.
Bizarrely my finger joints seem to be less painful after 2 mths. on the generic drug, but I'm noticing other adverse effects - increased emotional instability for example.
I just got my Arimidex today (it was "proper" Arimidex)and i have usually had this. But it got me thinking that on the few times when i have received Anastrozole generic brand (which I have two or three times), my joints were noticeably worse (knees especially) - but I had not connected it at all to this until I went back over this thread. I do usually get Arimidex without asking, but occasionally not, so I don't know what's going on there! It all seems completely random to me, and I'm definately going to keep track now of when my joints are bad.
I told my doctor that I would not be taking anastrozole as the side effects gave me no qulity of life. I asked to be referred back to the onc. She put me back on arimidex.
Whilst waiting in the chemist I happened to spy a leaflet called YELLOWCARD its for reporting side effects of medicine (or phone 0808 100 3352 MHRA). If everyone filled this form in then they would have no choice but to believe us, and hopefully get the recipe correct ie similar but not identical.
msmolly - altough the pharmacy must dispense branded Arimidex if the dr specifies that on the script, they can dispense whatever generic product they have in stock if anastrozole is ordered.
If someone wants to try anastrozole from a different manufacturer than they had before they would have to contact different chemists to find one stocking a different one.
Mention "hot flushes " to anybody and they think you´re mad . It´s the old "good gracious , all women have them , put up and shut up ." having gone through it all once at 40 , I know that hot flushes caused by pills ie chemicals are way way worse that anythiing nature trew at me , and i thought that was bad enough at the time .
Hi msmolly, thankyou for your reply, I did call the BCN yesterday to see if they could do that, but she said that the budget is with my surgery even though I said he had prescribed Arimidex, she did suggest I go and see a female doctor which I have made an appointment for on Friday. Im on my 3rd pack now, but my own GP wasnt very helpful at all. What else could be causing the hot flushes if not a change of tablet? Havnt had them for ages!
Shirley - as someone suggested on here earlier in the thread - how about trying your onc? A letter from an oncologist will surely compel the GP to do something.
Meanwhile just be a thorn in his side - say you agree to taking the generics for a while BUT you want a different brand of generic to see if that makes a diference. As Sarah says - some of them detail different components. My understanding is that pharmacists have to dispense exactly what is on the prescription - make the GP do his homework!
Out of curiosity I had a look at the patient information leaflets for some of the different brands anastrazole now available and found that all of them contained exactly the same ingrdients in the tablet itself as are listed for Arimidex. Some of them also had the same ingredients for the film coating, but some of them were different. I only did a spot check but found, for example, that Actavis and Winthrop had the same coating but Discovery brand is different.
Yes, my SEs had got alot better too! Thats how I know now that it must be the new tablets, the hot flushes are awful again, cant sleep for them, and throughout the day. I really hope you dont get changed off Arimidex, Wicca that article was interesting. I dont know what to do now as its obvious my GP isnt going to put me back on Arimidex.
It may be of some comfort to know that I have been on Arimidex for 2.5 years and the SEs are considerably better now than they were a year ago. They have definitely diminished as time has gone on.
W1zzy , sorry , but letrozole is very similar , i have painful hands and toes , also get reaaly really bad cramps in hands , feet and legs , both calves and even worse , thighs .
I asked my onc if there would be any benefit to my changeing tablets , my hotflushes and sweats are just horrendous , and he said "no , they all work the same way , with generally the same side effects ." Whoopee !! four more years to go !!
Just found a website that may answer some questions, it looks legit if you cannot get through on that type in generic cancer drugs then go to generics, or merck magazine. http://magazine.merck.de/en/Life_and_Assistance/biopharma/biosimilars1.html?wt.srch=1
I have at last been to see my GP today, thought I would give the tablets a good try - been nearly 2 months since the change fromArimidex, I have awful hot flushes now at night they are just like they were when started on arimidex and throughout the day too. He looked at me like I was mad! and said that he would get the pharmacist to see me, so that will be interesting. His parting words were "Its part of the NHS cutbacks" - I was only in there 3 minutes! I know that I didnt have the night sweats and hot flushes before changing - so what else could it be? (Had to leave cos felt like I was going to sob!)
I was also on Arimidex (Anastrazole) for 2 months then the pharmacy started supplying Anastrazole. I have just queried this with my surgeon and she explained that Astra Zenica who made Arimidex has lost the contract so it is now open market. However as my hands have been badly swollen and very painful, especially during the night, I have been changed to Letrozole. Is there any chance that these side effects will diminish?????
Please go back to your GP and relate all these problems to him -
don't pull any punches just tell him how it is - if this does
not work go back to the oncologist to see if they can help you.
I suffered very similar symptoms to you but had a very sympathic
GP who put me back on Arimidex (just over two weeks) the pains in
my joints have almost subsided |(just knees to go but these were
the most painful)but these pains are bearable I can now walk up
stairs but going down is still a bit painful. Do hope you
get someone to listen to you and you can go back on Arimidex
then have some sort of life again.
Best wishes and regards
"Liar liar pants on fire !!"
Well blow me down . After posting on here , and having been on Letrozole almost 15 months and rarely having the same brand two months in a row , and never ever having had Femara , I went to my usual pharmacia yesterday to collect my shipping order , and what did I get ?..........................Femara !!
These are the real macoy , Novartis ( Barcelona ) Now how come I´ve got these ?
I have to say I really wish , I could have the same brand , how on earth can you tell if any of the different makes suit you better than another ?
Arimidex went generic out here in Spain at least three years ago to my knowledge , so there are proberbly many varieties just waiting for you as petal says .
I think it´s perfectly reasonable for users (us ) of these tablets to want to be able to stick with the exact same brand . I think it´s unreasonable for anyone to expect us to be happy being swapped about , too much goes on in our lives that we have no control over , at least let something remain the same !!
Wicca with regard to a few of your questions. It would be unlikely that the original company would reduce their price as they may still have patents in other countries remember this is a world wide business. New drugs are always trialled and tested but these generic tablets are not new drugs. The anastozole was trialled and tested as branded arimidex so it has done all it's trailing. The coating isn't subject to any restrictions as it is "harmless" and doesn't need a drug licence. Your symptoms sound terrible hope you get some relief soon. Pam.
Topsymo, probably like you in the last 40 years have only visited a Doc about 5 times (until the cancer). Working, Riding, Swimming and walking about 5 miles a day.
Had no time for people going through 'the change' every person going to the docs unless for life saving surgery was a waste of space and money.
How the gods can punish! On the anastrozole I wake myself up screaming in pain. Often now I have to go down the stairs on my bottom cause my knee joints are not up to it. I will buy Arimidex off the internet - that is if the severe mood swings dont get me first!
One thing that does puzzle me if the new companies can sell this drug for pennies why is arimidex not priced the same, surely they have got all their Research and Development money back and will go out of business selling the same drug for £70.00 more per month, or is there something more that we do not know? Also were these new drugs trialed/tested in any way? Food for thought? Regards, Wicca
Hi msmolly and Petal5, thanks for your reply, I was a bit confused but now I understand. I am only just experiencing the side effects hopefully they will wear off, I have got my repeat prescription and will have to see what I am given, as long as it does what it is supposed to do, and the se dont get any worse. Take care junieliz x
Hi junieliz. Sounds like you have the original Arimidex. Arimidex is the trade name and anastrozole is the actual drug compound. It's like Nurofen which is Ibuprofen so will have the trade name in big letters and then what is in it, in this case ibuprofen somewhere on the packaging. If yours has Arimidex it must be the original.
I think it is very difficult to say if there is any difference between the different brands as I find my symptoms change from month to month anyway. I have been on them for ten months now and to start with it was my knee joints that were badly effected. However, recently they have been a bit better and it is my hands that are really arthritic. Same with the hot flushes, some months are better than others.
I would assume that as it is a big market there will be other generic versions out in the future so some of these might suit people better. As someone else has said it is the coating on the tablets that is the difference not the actual ingredient.
If your packet says Arimidex then you have got Arimidex. Arimidex is the brand name - anastrazole is the drug.
Hi all, I changed to Arimidex following tamoxifen 6 weeks ago, and I am now feeling side effects, mostly joint pain. I was wondering which tablets I am on as have had two prescriptions and they say Arimidex in large letters and underneath anastrozole. Thanks in advance, best wishes to all junieliz x
I can only add that I changed from arimidex to anastrozole and the
side effects were unbearable - obviously some ingredients and the make
up suit some people better than others - after all we have different
degrees of tolerance to certain drugs. I don't think it is only a cost
problem I believe it is also quality of life and if I had not been able to change back to arimidex I would have had to find a way to fund arimidex myself. Fortunately, I have a very sympathic Dr and was
changed back to arimidex without any problem.
Excuse me adding my twopennothworth .
I live in Spain , and was prescribed "Femara " .
I have never had it , I´ve always been given Letrozole which is the generic version , so I cnnot comment on whether the se are better or worse .( I have many and some are awful ) But month after month my letrozole comes from different pharmaceutical companies, not only different companies , but also from different countries !
Unfortunately it seems to be something I have to put up with . I don´t like it , I don´t care whether it´s Femara or letrozole , but I would at least like some continuity in these tablets after all they are important , it´s not just like taking any old pill for a headache that we are talking about is it ?
I will really really begin to worry if they try to palm me off with pills from China !
One day it will happen .
Excuse me from gatecrashing your thread .
topsymo - you probably won't need to ask to go onto the generic brand as it will be decided for you.
As someone said earlier the problem is that the drug content of the preparation will be the same but the rate it is released may be the problem for some people. I personally have found that my digestive system doesn't seem to deal with it as well as it did Arimidex and I have noticed emotional effects which may be hormone-balance related as well.
Topsymo - as I understand it, the basic active ingredient is the same it's all the rest of the stuff that goes into the pills (same with any drug) that can have different SEs on different people.
I was happy enough to have the generic form but the SEs have deffo worsened for me on it, including some of those attached to my bone mets, hence the current request to go back to the 'original'. Whilst I accept that the SEs can be a small price to pay for keeping the cancer under control as much as possible, I agree with my onc and surgeon who both say why struggle with SEs that are impairing your quality of life when there could be an alternative or additional drug that may help relieve those symptoms, be it branded or generic.
PS - When I was on tamoxifen I was actually better on the generic form rather than the Nolvadex-D that was the more expensive one at the time.
I really don't understand this thread! A number of people have contributed - and written with some knowledge - that there is NO difference - but others are still saying their side effects are worse. How can this be the case? .
I am still on Arimidex but even on Arimidex, my SEs do vary from time to time- that's how it is.The drug is the same- and if we beleive it will keep our BC at bay we just have to get on with it - hot flushes, bad joints, etc etc
I actually object to the NHS (and my GP) wasting OUR money paying over the odds to Big Pharma. In fact I will be suggesting that I go onto the generic anastrole next time I need a prescription.
Like one of the earlier people on this thread I always choose the generic brand if I have to buy over the counter medication. Why wouldn't you?
I was at clinic last week and mentioned I had been given the generic version now and side effects seemed to be worse. I too was getting even worse mood swings and wanted to cry although I'm on prozac to help with those SEs anyway and I was getting really horrible dreams/nightmares that only started with the anastrazole. Nurse is going to get hospital to write to GP to say I must have Arimidex branded tablets. Mentioned in chemist's today and he said the difference in cost is quite a lot and they don't get reimbursed for the difference if say the GP writes the generic name and they dish out the branded ones. Something like Arimidex is £90 a month approx and anastrazole is £2 a month.....
Had similar symptoms to you - except no hair fall out -
suggest you go to your Doctor and explain these problems.
I did this last week (but spoke to triage nurse) who
explained everything to the Dr and am now back on arimidex
and the joint pains are now subsiding and my mood has
improved dramitically - no more wanting to cry.
It is possible to change back to arimidex.
Good luck and persevere!!!
Have now been on two different makes of anastrozole. Very different side effects to arimidex. One severe mood swings, hair falling out and terrible pains in joints, then Teva, fury face wanting to cry four or five times a day and eye watering pains could not tell if it was bone or muscle - any one know just how many drug companies are marketing this??????? My doctor says that they are both identical to Arimidex!?
Just seen my GP for a routine repeat prescription review and was given Arimidex again (two months' supply- wonderful!)
No mention was made of any change.
Found all your post so interesting - Especially since I received a letter from my G.P this moring informing of the change to my prescription. I can understand why they want to change it - makes good economic sense BUT if its not agreeing with some of you why oh why do you have to jumps through hoops to get back to Arimidex. God we have put up with enough mind blowing stuff - enough is enough. Too many Doctors tend to think 'side effects' are in our heads and dismiss our problems as the winging of weak women.... but of course they dont actually say it in so many words but the look or body language says it all. Ha rant over - normal service is resumed!
Just collected my latest prescription from GP expecting to find some more generic anastrazole - so am very surprised that I have been given Arimidex again.
I didn't request it so perhaps my GPs have had a change of heart.
I think I would be inclined to Email my Oncologist, and ask if the substitute meets with his/her approval.
If the Oncologist thinks you should have what they originally prescribed, then the GP will bow to their expertise, but if you raise it with your GP, you won't have any clout.
Thankyou all for your comments on Anastrozole I thought it was just my imagination that since I was being supplied with these instead of Arimidex I have felt bad side effects limbs and joints like lead etc. I suffered no noticable side effects with Arimidex. Also my nails and skin are just awful. I will make an appointment to see my Doc tomorrow and ask for Arimidex.