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Date: 05.05.2011
From: Amy

Subject: enbrel

Hi all, I am on methotrexate injections at the moment only at 10mg but it's really making me ill. Can be sick for days and my hair is starting to fall out slightly! I've read a lot about enbrel and queried it with my doctor and was told that this is a very expensive drug and about a years waiting list to get on it? I've got an appointment with my rhuemy next week to see what he says but I'm getting the impression that they just pass me from pillar to post at times! Getting a bit annoyed with it all. I know I'm maybe not as bad as some people but when I have my flare up's I struggle to do anything pretty much! Sorry for the rant! x
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Date: 05.05.2011
From: Curtis

Subject: Re: enbrel

Hi Amy I'm i don't know about enbrel but I'm on cimziabat the moment and im seeing some really good results from it, iv been off work about 6 weeks with the worst flare up iv ever had I could barely walk, my feet an toes were a real mess but after a couple of week on cimzia I'm feeling alot better an not in half as much pain, just another option for you rather than wait a year for the enbrel
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Date: 05.05.2011
From: Patricia

Subject: Re: enbrel

Hi Amy! I am not on enbrel but haven't heard about a years waiting list. As far as I knew if you had tried two Dmards (methotrexate being one of them) and had reactions to them then you would be put forward for the anti tnf/biologic drugs such as enbrel. I am on my second Dmard now and it is working a bit but not fully. If this continues then I am expecting, at my next appointment, to be offered the 'enbrel' type drugs from what my rheumatologist has said. Don't let them mess you about Amy. Look on the NRAS site. I think they list the criteria for the RA drugs from NICE. Yes, they are very expensive drugs but if you need them then they should prescribe them. You can't keep on a drug that is making you ill. Your Reumatologist is the one to talk to Amy. Best Wishes....x
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Date: 05.05.2011
From: cookie

Subject: Re: enbrel

Hi amy i was in the same boat as you but on oral mxt didnt get on well with it so they changed to leflunomide that was the same hair loss pukibg etc so they refered me for assesment for anti tnfs. The process is simple examination (non invasive) and blood tests then a furthur assesment a month later you have to reach certain critetia i.e raised esr and x amount of painful joints etc. The goverment via nice i think set the criteria you have to reach a score of over 5.1 on thier scale. My score was 6.7 so i was lucky. You certainly dont have to wait a year i waited 13 weeks for my first app.they may want you to try an alternative before refering you for anti tnfs but you maybe like me and really dont get away with them.dont let the fob you off forever i gave the leuflounomide 4 month and told THEM enough was enough. I am waiting for my cizima to be delivered. Hope all goes well hon but dont let them push you around xx
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Date: 06.05.2011
From: Amy

Subject: Re: enbrel

Thanks everyone for your advice. I sometimes feel because I am only 22 that they don't really listen to me. I don't want to be passed about any longer it's not them that have to put up with my bad days! x
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Date: 08.05.2011
From: Jonny

Subject: Re: enbrel

Hi. Keep trying and pushing to get on Enbrel (or simular). For a lot of ppl including me, it is almost a miracle drug. Fight your very best!
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Date: 09.05.2011
From: Curtis

Subject: Re: enbrel

Hey Amy I know exactly how you feel I'm 28 and I've had this crappy disease since I was 26, is really no fun is it! I was getting messesd about and fobbed of till I finally put my foot down and really let them know how much pain I was, my girlfriend was there with me at the time and she started then aswell lol she told my rheumy how it was ruleing my life and I could not do anything with my 2 year old son she also said I was always down and depressed, it shouldn't really of come to thet but hey it got results and now I'm doin ok still haven crappy days but at least I can walk properly most of the time, it does really suck getting arthritis in your 20 or even younger

Good luck
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Date: 10.05.2011
From: Nadia

Subject: Re: enbrel

Hi Amy

Although I'm in Australia, we have the same battles here to 'get through the red tape' to get the 'real big boy drugs' like embrel and Humira.
The best advice I was given by my rhumy is to understand the system, the criteria and how to 'play the game' to get what we need, as cookie mentions. I compare it to the analagy of passing a driving test, you just have to do what it takes for the examiner to tick their boxes and you pass. So - make sure you get as much info as possible, understand the road you have to take, take control, and you WILL get the result you need. Go for it!
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