Do we get enough support and advice from our drug companies?

[Miss-A-V-P]

Hi all,

This is a question out of my own curiosity!! Do you think, as transplant patients, we get enough advice from the pharmaceutical companies making our immunosuppressant medications?

What more could Pharma companies do to support us better?

[manbreak]

Hi I think when we first have our transplants its hard taking all the information in I know that as time has gone on I have started to have side effects from long term predisolone use eg had cataracts removed a few months ago..........but we really don't have a choice if our transplants are to last I think for me anyway they do give you all the info they can.......its good to know that someone in the business is looking out for us xx

[Methusala in reply to manbreak]

There is no way I would agree to continue taking Predisolone, a steroid, as part of my treatment. Steroids are bad news and have serious side effects. I have been on Mycophenolate and Adoport for 8 years and impress my consultant with how well my transplant is doing and how good my health is and I am in my seventies.

[manbreak in reply to Methusala]

I have been taking prednesolone for 33yrs when I had my.first Transplant they didn't have as many immune suppressions drug I have got not choice but will have to carry on taking this drug for the rest of my life........

[Traceyh22]

Same here manbreak, 26 years post transplant, 25 of them on prednisolone & azathioprine as, back then their new wonder drug cyclosporine didn't have the desired affect. I deal with the side effects as the alternative doesn't bear thinking about!

Yes more info would have been good but as others have pointed out, you have so much to take in at the time it's impossible to process everything you are told.

33 years!! Well done you :0) hope I can make it that far too ( and more)