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Treatment around the country

Hi Everyone,

this is my first post so hope I’m doing this right! I was wondering if anyone who has CML in Wales or Scotland could let me know how they find their treatment and ease of receiving their imatinib supply and which generic is available? I’ve had CML for 10 years but I’m finding London living is too much for me now so I’m looking to move to a quieter more healthful environment, but obviously I’ve got nerves about leaving my consultant and hospital here where I’ve had great treatment. I’d be really grateful for any advise or heads up about things. Thank you!

Hi I've moved from England to Wales while being treated and had no problems. I signed on swiftly with the GP where I moved to, and my consultant where I moved from gave an extra month's worth of imatinib (4 months not the usual 3) to tide me over in case of delays. Got an appointment with the haematology consultant at the new hospital in about a month; one thing I did was to take a copy of my history to the first appointment with the new consultant as the NHS isn't good at getting the records moved. Both the hospitals involved used Alcura to dispense the drugs. These arrive by courier so as long as you are not moving to a tiny island in the outer Hebrides that should be OK. I am now getting the Wockhardt generic imatinib, but have had another one as well. Hope this helps.

Thanks Alistair, that’s really reassuring about the speed of setting things up and great idea about taking a copy of your history with you. We’ve been wanting to make the move for about a year but my husband has been reluctant as he’s scared I won’t get as good attention somewhere else, but I really want that fresh air and slower lifestyle! I don’t know the Wockhardt generic, do you have many side effects etc? I was on Gleivec (forgotten how to spell it already!) until last summer, then moved on to Novartis generic which I think is basically still Gleivec with no new side effects but I’ve heard some of the generics have caused a lot of new aches and pains other than usual cramps and tiredness. I saw you’ve moved down to 200mgs daily, I’ve just done that too at my own request as I’d love a bit more stamina! Thanks so much for answering my query, can’t wait to show my husband your post! Starting to work out how many boxes I’ll need!.....

Hello

I live in Edinburgh, and I get Sandoz imatinib from the Western General Hospital.  They provide it at every quarterly check-up, and it is, I believe, made by Novartis, so is the same as Glivec.  If you need to go to the Scottish Centre of Excellence for cml, you would need to be in or near Glasgow, but I don't know which generic they supply.  I have never had any problems with the staff at the Western, and I see the same consultant, Dr Maung, each time I go.  added to that, Edinburgh is a great place to live!

Olivia

Hi Olivia,

Sandoz imatinib is, as you suspect, the very same as branded Glivec. It comes off the very same production line and is just put into a different packet.

About a year ago a bunch of generics (from all around the world) were tested in a lab to see if they all contained the exact same imatinib molecule, and if so in the right dose. I think the suspicion was that some might not quite be perfectly dosed, but they all passed with flying colours. 

David.

Thanks Olivia, love Edinburgh! but need to make the pennies stretch so I’m thinking of going to Skye! Really embracing nature! I think if we do decide on Skye I’d better contact the nearest hospital and do some more research on which generic I’d get and Alcura options! I think I’d be making a trip to Portree or even Fort William to pick them up from a collection point. Thanks for the info about Glasgow too. I’m on the Sandoz too at the moment and find it really suits me, which is why I’m nervous of switching to another generic. So many things to weigh up! Thanks again and take care.

Thanks for info David, I’ve read on here about people developing bad joint pains once moved on to some of the generics and I believe one of them was about the coating used on the tablet! It’s that sort of thing I’m hoping to avoid, I think in these cases the consultants moved people back on to Glivec but not until 6 months or so of pain and it’s just something I wanted to find out a bit more about.

Hi, I moved to the Wockhardt generic on 400mg about 18 months ago and had no adverse impacts compared to the Novartis Glivec. Went down to 200mg 6 months ago. Maybe I am just lucky. The one thing I would say about them is the coating taste is not pleasant, so I put the tablets between my teeth and wash them straight down with water without them touching my tongue.  

Thank you Alistair, if that’s all I have to worry about I will think myself very lucky! Medicines supposed to taste bad, right?!

It is indeed possible that the excipients (fancy word for the non-active ingredients) in the generics could cause some people problems. But also people sometimes get health issues and are quick to point to a generic when it might be totally unrelated. I'm not saying that generics never cause issues - far from it - but for the vast majority of people they work just the same as the branded version.

Remember, very few people will go online and post a message to a forum (unless asked) saying "I changed to a generic, and nothing has changed". You tend to mainly hear about problems people have, which can in a way go toward overstating the issue in your mind.

David.

That’s really true David, thanks, I can sometimes over think it all! It’s just when you are making a big  lifestyle change and it’s non reversible you want to cover all the possibilities - I just better start chilling!