Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 <<Can anyone in the UK tell me if dofetilide is used here? I did a search last night and see that it has been approved here. There was lots of mention on QT etc and administration, but there did not seem to be any strict rules related to prescribing it - as they have in the US (but then I may have missed it). I just want to have some info up my sleeve for my next cardio appointment. >> Hi Fran, its' still only available in the uk on a named patient basis. The hospital has to have been trained by pfizer in administering it so it's only available from a few hospitals in the uk (the only one I know that is actually shipping it out is St s in London. I know my local hospital (Leeds General Infirmary) know how to administer it because they were involved in some trials but I'm not sure they are actually giving it to anybody at the moment). I think you may have to twist a few arms to get hold of it. All the best -- D (33, Leeds, UK) AFibbers Database http://www.dialsolutions.com/af AFib Support Group http://groups.yahoo.com/group/AFIBsupport Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Fran: C., one of our Moderators, was on Dofetilide at one time and he is in the UK. You might want to give him a shout. Just a note here: and I went on Dofetilide just about the same time in the Fall of 2000. I was never so scared in my life. I was a basket case...and walked me through it. He will always hold a very special place in my *heart*. I love you . Ellen 68 NC **************************** > Can anyone in the UK tell me if dofetilide is used here? (snip) Fran **************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Fran there are only tow Hospitals that use this drug in the UK. In on a named patient basis only. I believe that Pfizer has to have proof that you have tried at least three other meds one being Amiodarone and failed on these drugs. Yes there are very strict guidelines in the UK. You've to stay in hospital for three day for this treatment. I was on this for a year before my ablation in France. C Dofetilide in the UK Can anyone in the UK tell me if dofetilide is used here? I did a search last night and see that it has been approved here. There was lots of mention on QT etc and administration, but there did not seem to be any strict rules related to prescribing it - as they have in the US (but then I may have missed it). I just want to have some info up my sleeve for my next cardio appointment. Thanks if anyone knows Fran - ********************************************************************** This message may contain information which is confidential or privileged. If you are not the intended recipient, please advise the sender immediately by reply e-mail and delete this message and any attachments without retaining a copy. ********************************************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2002 Report Share Posted March 21, 2002 Thanks everyone. C. - What are the names of the two hospitals and the Dr's who can prescribe it? I only ask because my cardio is not a cardio and I am hoping he will refer me to an EP. We don't have any specialist cardio's or EP's in our health area, so I am going to have to be referred on. Probably to Glasgow or Edinburgh. But maybe they can send me further a field - to England - if I present my case well enough. I wouldn't try amioderone in a million years. Especially after the breathing problems I developed on sotalol. At present I am doing fine (I think) without medication (Have been on five and none worked). But I just feel so run down and tired all the time, and this must be because of my irregular heart, even though it does not race anymore. I need to feel that there is an option open to me for the future. I hoped I would go from strength to strength, but I think that my initial feeling better was down to loosing the awful side effects when I stopped meds. Now I have been off meds for three months I know that the way I feel now cannot be blamed on anything - but my health. Does anyone on dofetilide have any problems with sleep. I have got my sleep pattern back now (which I lost with sotalol) and would hate to loose it again. Fran > > Fran there are only tow Hospitals that use this drug in the UK. In on a named patient basis only. I believe that Pfizer has to have proof that you have tried at least three other meds one being Amiodarone and failed on these drugs. > > Yes there are very strict guidelines in the UK. You've to stay in hospital for three day for this treatment. I was on this for a year before my ablation in France. > > > C > Dofetilide in the UK > > > Can anyone in the UK tell me if dofetilide is used here? I did a > search last night and see that it has been approved here. There was > lots of mention on QT etc and administration, but there did not seem > to be any strict rules related to prescribing it - as they have in > the US (but then I may have missed it). > > I just want to have some info up my sleeve for my next cardio > appointment. > > Thanks if anyone knows > > Fran > > > - > > > ********************************************************************** > This message may contain information which is confidential or privileged. > If you are not the intended recipient, please advise the sender immediately > by reply e-mail and delete this message and any attachments > without retaining a copy. > > ********************************************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 on Thu, 21 Mar 2002 at 20:27:19, Codling, wrote : >Fran there are only tow Hospitals that use this drug in the UK. In on a named >patient basis only. I believe that Pfizer has to have proof that you have tried at least >three other meds one being Amiodarone and failed on these drugs. I am not sure about the amiodarone part of this, . I went on dofetilide without having been on amiodarone, but then I may have clinical indications against amiodarone (I certainly mentioned various concerns about it). Fran, I think you would need to get a referral to St 's Hospital Medical School AF clinic or maybe see one of their Drs privately if you had problems with NHS contracts etc. I am not sure which the other hospital is referring to is. Your lovely site with all the doctors on it should have them, but also see : http://www.sghms.ac.uk/depts/cardiology/groups/Camm/camm.htm http://www.sghms.ac.uk/depts/cardiology/groups/rowland/rowland.htm and the other pages linked to there. >Yes there are very strict guidelines in the UK. Not just the UK! >You've to stay in hospital for three >day for this treatment. Though I can understand people's concerns about the possible risks of Dofetilide, I think they are well understood and provided your creatinine clearance and QTc are monitored, you will be fine. Note that *most* anti-arrhythmics are in the class of QT-lengthening drugs. There's a site somewhere (can't find it in my bookmarks right now) something like www.qtdrugs.org - suggest you Google for it. Best of health to all, Vicky London, UK, 1954 model http://www.vagalafibportal.fsnet.co.uk/ " Nothing in life is to be feared. It is only to be understood " - Marie Curie --------------------------------------------------------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 > > > > > > Fran there are only tow Hospitals that use this drug in the UK. In > > on a named patient basis only. I believe that Pfizer has to have > > proof that you have tried at least three other meds one being > > Amiodarone and failed on these drugs. > > > > > > Yes there are very strict guidelines in the UK. You've to stay in > > hospital for three day for this treatment. I was on this for a year > > before my ablation in France. > > > > > > > > > C > > > Dofetilide in the UK > > > > > > > > > Can anyone in the UK tell me if dofetilide is used here? I did a > > > search last night and see that it has been approved here. There was > > > lots of mention on QT etc and administration, but there did not > > seem > > > to be any strict rules related to prescribing it - as they have in > > > the US (but then I may have missed it). > > > > > > I just want to have some info up my sleeve for my next cardio > > > appointment. > > > > > > Thanks if anyone knows > > > > > > Fran > > > > > > > > > - > > > > > > > > > > > ********************************************************************** > > > This message may contain information which is confidential or > > privileged. > > > If you are not the intended recipient, please advise the sender > > immediately > > > by reply e-mail and delete this message and any attachments > > > without retaining a copy. > > > > > > > > ********************************************************************** > > > > > > > > Web Page - http://groups.yahoo.com/group/AFIBsupport > > FAQ - http://groups.yahoo.com/group/AFIBsupport/files/Administrative/faq.htm > > For more information: http://www.dialsolutions.com/af > > Unsubscribe: AFIBsupport-unsubscribe@y... > > > List owner: AFIBsupport-owner@y... > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2002 Report Share Posted March 22, 2002 > There's a site somewhere (can't find it in my bookmarks right now) > something like www.qtdrugs.org - suggest you Google for it. > > Best of health to all, > Vicky > > London, UK, 1954 model > http://www.vagalafibportal.fsnet.co.uk/ > > " Nothing in life is to be feared. > It is only to be understood " - Marie Curie Thanks Vicky I think I had it bookmarked. Was it http://www.qtsyndrome.ch/index.html which leads you to the drugs checker. It is a very good informative site. It also has the details of a swiss Dr who will read 12 lead ECG's for free. Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2002 Report Share Posted March 25, 2002 Cheers Vicky Also I wonder if this reply will show up. My posts from the last couple of days haven't been taking. I don't know why or where they have gone. VEry frustrating. As a reply I'm hoping this will show. Fran > on Fri, 22 Mar 2002 at 19:52:37, fross2001 <fross@e...> wrote : > > > >I think I had it bookmarked. Was it > >http://www.qtsyndrome.ch/index.html > > > >which leads you to the drugs checker. It is a very good informative > >site. It also has the details of a swiss Dr who will read 12 lead > >ECG's for free. > > Also check http://www.mikecowley.co.uk > > Best of health to all, > Vicky > > London, UK, 1954 model > http://www.vagalafibportal.fsnet.co.uk/ > > " Nothing in life is to be feared. > It is only to be understood " - Marie Curie > -------------------------------------------------------------------- ------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2002 Report Share Posted March 26, 2002 > Guys be warned on contacting Pfizer direct. > > 1. They are not helpful, (It may be because of the animal rights people but no names are given out and they are very touchy on speaking to you on the phone. > 2. I managed to work out there email address and they did not respond. > 3. I received a written letter from their Md asking me to stop calling them faxing and Email as they we breaking the law speaking to me . > I contacted pfizer at the U.S. 800 number on their web site and they were very courteous. Maybe because I was asking general questions about dofetilide and not specific ones about my medical situation. Quote Link to comment Share on other sites More sharing options...
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