Hi all, Off to the Doctors in morning, Meds changed to flutiform 9 weeks ago, and just found out it's a trial drug started last month in uk. Just a bit annoyed that I was not told this or asked, I probably would have consented anyway, but it would have been nice to have been asked. And also I have no futher appointment with the consultant who prescribed it, which I think is odd. will let you know what my GP says but not holding my breath, (not that I can) ha ha Nannyb xx

6 Replies

  • Hi nannyb how are you getting on with this new drug? Do you think it is helping? By the way I like your quote about holding your breath. I am getting desperate to get something for my Husband. He has said a couple of times in the last few days that he doesn't like feeling ill. We are going to a pulmonary fibrosis Meet the Experts Friday. I hope we can learn a bit more. I haven't heard of anything miraculous yet. I will let everyone know if they have found anything. I'm not holding my breath! Ha! Ha!

  • Hi Mavary I get dizzy, and I'm clock watching for my next meds, still get breathless but I surpose its early days other wise fine. I'm not upset that I'm on it, just that I wasen't told, and how are they surposed to be monitoring me with no further appointment. Well that's my wingeing over. Sorry about that. Feeling ill does get you down. If it wasn't for my hobbies I would be pulling my hair out. Hope they have some worthwhile news friday, i'll let you know what the GP says tomorrow. Nannyb xxx

  • Hi Nannyb I would be angry if I hadn't been told it was a trial drug. Like you I would probably agreed to it but it is nice to be told it is a trial drug. Also I think it's wrong you are not being monitored. If you don't get satisfaction with your gp, call your consultants secretary and tell her you need to see him regarding this med. It's important they keep an eye on you! M x

  • Let us know what the Doc says - I would feel the same as you; you haven't been treated with respect. Good Luck TAD xx

  • This failure to talk it through with you is outrageous and entirely inappropriate. What is the point of a trial if you are not being monitored? Also often consultants/gps etc are paid by drug companies to enrol people in trials. Could there be a financial incentive in your case?!

    Mocarey's advice is good - if i were you i would call the consultant's secretary.

  • It is appalling that you were not consulted. Any new drug being trialled needs to be monitored. I fully agree with Mocarey's suggestion to call your consultant,s secretary and tell her you need another appointment, if only to tell him what you think of what he has done! x

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