Humira funding

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Hi my 26 year old son has been on humira for a few years now (He was diagnosed with ankylosing spondylitis and he is finding it very difficult to attend the hospital check ups, blood tests and consultant appointments and hold down a job. He works in north london and his hospital is in sidcup. My son is considering moving closer to work i.e north london and transferring to a hospital in that area so that he can get to his appointments with less time off of work. He has missed an appointment this month and his injections have been put on stop until after his next appointment at the end of August. Has anyone tried to change hospitals, did you get the funding? and how long did the process take? Without the injections of humira he wouldn't be able to work. So he is in a catch 22 situation. It is such a shame that young people that want to work are given such obstacles isnt it bad enough that they have to deal with this terrible disease without having to fight against the system as well!!!!

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  • Posted

    Hi there I'm so sorry to hear the problems your son is having its hard enough to get through the day without having all the other problems on top.fortunately I haven't had to change hospitals but I understand how hard it is to keep working and being without your medication.I had problems having to take time off for infusions and travelling to get to them. I hope you can find some support keep your chin up and big hugs xx
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  • Posted

    Have you thought about not taking this drug at all - I manage my AS on one 500mg 

    tablet of naprosyn daily and lots of excersize - swimming  and aqua classes, walking  etc. I work in a job where I stand all day and keep very active, eat anti-inflammatory foods - lemon water and avoid starches and sugar. Dont let the medical profession scare you into taking drugs that damage your body and do more harm than good - they really do not understand this illness! 

    Im 60 and have had this since my teens but have kept it at bay by staying fit.

    Hope you will try the less aggressive and more healthy route.

    Good luck.

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    • Posted

      My son has this disease very badly effecting his spine, shoulders, knees and hips before this drug he tried anti-inflammatories which gave him stomache ulcers and was taken off of two drugs because they were with drawn from the market because they had such bad side effects. We have tried a non starch diet, he juices daily and is very physically active he walks goes to the gym and swims but the only thing that gives him a life back is humira so for him this is the only drug. I appreciate your comments but without witnessing the pain that my son is in you cannot understand his plight. I am very pleased that you can control this disease with 500mg of naprosyn daily but this is not an option for my son. Without Humira he would be in a wheel chair and at only 27 that is not something he or myself wants for him. Thank you for taking the time to reply.
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  • Posted

    Hi there again I would do some research online and try talking to your sons rhumi I'm 39 and sometimes its so hard to the basics I try and keep as active as I can but the fatigue and pain make it so difficult.my head wants to do everything but my body just won't cooperate.I've been on countless anti inflamatries and tried humira which worked but only on a weekly dose.I've been on embrel,infusions and am now on cimzia,nambunatone,tramadol,steroids,co codamol.the cimzia is not working and as I work as a cleaner. The pain trying to do my jobs is awful but I talk to my rhumi and try and come up with different approaches.so I would speak to them first
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  • Posted

    I'm in the US and just want to say how sorry I am that your son has to deal with your system.

    As someone who takes Humira for her AS, and has tremendously phenomenal results with the drug, I cannot imagine how hard it would be to have to give up the drug, albeit temporarily, while the system sorts it out. Something very wrong with that system.

     

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    • Posted

      Thank you for your comments, it gets very frustrating at times, especially as a mum watching my child suffer breaks my heart.
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