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Hello   ,  I must tell someone about  our drug situation at City hospital.   22months I was put  on  imatinib  after being on glivec  by norvaris . Not very pleased about it but did loose some weight, other side affects  were  horrid.  Have now been told I must change again to  Wockhardt  even the sound of it is rubbish!  I am very unhappy about this  it took a fair time to get used to the last lot.

 but we seem unable to do anything about it.  I was told intrapharm  were not making this anymore , not true I have spoken to them.

 I bet  the nhs has found a cheaper drug  and blow what the patients want. 

Has anyone else  come across this ?  

I feel they think we've  had our time  and what are we moaning about?   Anyone else dealing with this  ?

Generic imatinib is relatively new in the UK. When first available, individual trusts sought the best value generic as it as available. Month on month, different suppliers would be the most cost effective. This has led to the different manufacturers pills being dispensed. As time has gone on, and manufacturers settling prices, trusts are in a better position to negotiate longer term deals at preferential prices.

Hospitals obviously want to get the best price they can, and that is right and fair. All the generic drugs contain the same active both branded Glivec and each other.

David. 

I don't think you are a patient . The hospital may want best value for money  but we will pay  the price , it took long enough to get used

 to the interpharm  tablets . Now these are changing   + just been told that they may well change again next time I need a scription.

I DREAD THE SIDE AFFECTS ...  I FEEL WE HAVE BEEN WRITTEN OFF. I  feel  we are helpless to do anything about it.

Hi Andycat,  If you think David isn't one of us, then I think you're BARMY.  (I'm from the US, so please excuse my borrowing a word from your lexicon.)

Yeah, it's a pain dealing with changes to medication.  My PCR scores started going up after my pharmacy changed to generic imatinib, so my doc changed me to Sprycel and that hasn't been a walk in the park.

What dose are you on?  Maybe you could get by with a lower dose in order to reduce your side effects?

Kirk

At least you get your meds covered. I am on Nilotinib at a cost of £25,000 a year which has to be paid privately. My husbands company are currently paying my costs but it won’t be long before the bill comes my way to pay and I don’t get a choice. I am living in the Middle East in Oman so am not entitles to free medical coverage.it makes me very nervous thinking about the long term future but what to do??

I have asked to go on 300 mg a day  because of the side affects   my doctor agreed .

 My concern  is they want to keep on changing the make of the tabs.   They  knew the  glivec  was coming to an end  + people were producing generic ones so why is there a problem getting it?  IT is bad enough having to change after 22 months let alone be told next prescription could be different again . I  DREAD THE SIDE  AFFECTS.

Hi. I was using the Wockhardt generic imatinib for the last year until I recently stopped taking them following the Destiny trial protocol. I had another generic before that, both through Alcura. The only difference I found was in the taste of the Wockhardt coating. There is no difference in any of the active ingredients between the generics, or they would not be licensed for use. I have seen a few people talk about different side effects between different generics but I had no issues like that, and think it is pretty uncommon. I am concerned that you are so worried about this which is unlikely to be a major issue. If there is a CML nurse specialist where you see your consultant they would be a good person to talk it through with and try to put your mind at rest.

It's good that your doc agreed with reducing the dose to 300mg.  Hopefully it will alleviate your side effects.  In my limited experience, imatinib has more benign side effects than dasatinib.

If you're bored and want to read about TKI side effects, here's a paper:  https://onlinelibrary.wiley.com/doi/full/10.1002/cam4.1808

We are all CML patients on this website---- including David. Some of us have had CML for a long time and wish to help others with CML, this is why this website exists. 

If you are struggling with sided effects - whether from brand TKIs or one of the generic imatinibs - then you are not alone. All of us have suffered to a degree. Many talk to their clinicians about reducing their dose - this may be something you can do. Given your side effects are obviously a major issue for you, you could also talk to your clinician about resuming therapy with Glivec (brand name) if your NHS trust has provision for that, or it might be that you could change to another TKI.

All TKIs have side effects- in fact, all drugs have side effects to a greater or lesser degree. You need to convey to your doctor that you are suffering from this issue.

Good luck,

Sandy

HI,  Thank you for your reply. You are lucky that you've had no nasty side affects on changing tabs.  a fellow in our cml support group is the same  but my friend Ann + I have had a rotten time of it.  And we dread changing so often . Today I have spoken to our local paper + am seeing our MP next month.  I wish they would just make a decision about which brand + stick to it.  I think maybe it's about money  + also the Brexit situation  has something to do with it. 

Whatever it is I hope other people will support this concern. We have our lives back + don't want to give them up without a fight.How are other people getting on on nilotinib or dasatinib?,  feel I'm  clutching at straws,   or other trials. 

Glad of any reply .  Best wishes for the season.