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  #1  
Old 12-14-2012, 07:04 AM
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Default Start Remicade tomorrow

So along with my million other health issues I have Hidradenitis Suppurativa (really gross and painful if you don't know what it is google will tell you, ill save you from the gory details) I have been battling it for 6 or 7 years now and it is in the worst possible stage (4). I have tried every recommended treatment out there besides remicade, it just all made it worse. My dermatologist has been trying to get me approved for remicade on a passionate basis because government medical will not cover it (At almost 30 grand a year, no one in my family can afford it). It has a 70% success rate, so I am hoping it will work. I get it intervienously every 8 weeks, after the first 3 doses which are done 2 weeks apart. I have been reading up on all the side effects and am extremely worried. I do not have much choice besides live off of morphine forever. So I need to try this. Has ANYONE had this medication or known someone who has? Hopefully this turns out okay I need relief from this
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Old 12-14-2012, 12:38 PM
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Oh my, I did not know what that was so I looked it up.... You poor thing! That looks/sounds extremely painful! I hope this new treatment helps you!


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Old 12-14-2012, 01:02 PM
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Oh geez , I hope you can get the new meds. That must be so painful. I am wishing you the best of luck and a little prayer.
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Old 12-14-2012, 04:38 PM
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Here's hoping that you can get the medicine. Alot of the side effects listed are very rare. They have to list everything that popped up in the clinical trials. I would try it if I was you. Good luck.
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Old 12-14-2012, 05:08 PM
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I don't know anyone who has tried that medication, but I just wanted to say that I really hope you're able to find a way to buy it! It's crazy that our basic medical won't cover some expensive meds that would improve quality of life significantly. My grandma was in a clinical trial and was lucky enough to be one of the people actually taking the drug and it improved her life considerably, but now if she wants to continue with it, it's $3,000 per month.

If there are extreme side effects, you need to decide whether the risks outweigh the benefits you would receive from the drug. It's a tough call, but continuously taking morphine also has some serious consequences.
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Old 12-14-2012, 07:21 PM
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Oh it was already approved for coverage. I'm getting my first infusion right now actually. They approved it for 6 months for now to see if it works and then well get it for longer if it does. This is the last medication I can try for this as I have tried everything else. If this doesn't work I think I may possibly be living on morphine forever. As I am only 24 I really do not want that to be the case. So far I feel good but it's only been about 30 minutes. I have another 3 to go! Wish I could've brought bailey but she will get lots of cuddles when I get home!
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Old 12-15-2012, 03:36 AM

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I hope you find a successful treatment. Good luck!
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Old 12-15-2012, 05:38 AM
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Denise, sweetie you are in my thoughts, I hope with all my heart that these
treatments work for you! Stay strong and brave, and remember that you can
always chat or vent with me. Keep us updated!
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