Survived my first remicade infusion
#325188 - 02/21/08 12:40 PM
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michele
Reged: 06/02/03
Posts: 6886
Loc: southeastern michigan
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Wow, its been a really stress full week. I found out just a couple of days ago, that my insurance only pays 80% of my needed remicade infusions. Just for the DRUG alone, not the IV or nurses or other supplies, just the DRUG COPAY is going to be at $500-600 per each infusion. Thats 2 infusions this month and than one a month for life!!!!!! My copay is going to be more than my weekly paycheck!
I started calling helplines, charities and foundations like crazy, over 20 in all and no one will help. The reason is that even though remicade has been on the market for a while, not exactly sure how long but about 10 years or so, it is only fda approved for crohn's, rheumatoid arthritis, and a few other auto immune diseases, not sarcoidosis.
I am working with an insurance agent at the moment to see about switching my blue cross plan to one that pays better on the remicade but thats not looking promising either. I have no idea how I am going to pay for these treatments but I had my first one this morning. I was exhausted and slept through most of it. Luckily, they got the IV in on the first try, I am a hard stick and was very happy about this. Then they hook you up to the drug, pretty much just like a saline drip thing and it takes about 2 hours for all the medication to go in. Since it was my first one and allergic reactions are common, they made me stay for another hour.
I am at work now, rather tired still and feeling a bit head achy and nauseous but relatively ok. I am still swollen and hurting but I know it takes time to work. Lets hope after going on 4 years of being sick and in pain, they have found the right treatment!
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Taking it one day at a time.....
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Congratulations! I sure hope it works and works well for you. I can't believe how expensive it is though. Also, that no one will help pay because it is not authorized for your condition. You would think the hospital (or wherever you go) would be happy with 80%. That's a big chunk. I hope your insurance agent is able to find a good solution.
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Glad to hear you survived the first treatment. I really hope this does the trick for you.
Sorry to hear about the $ issue. It's pretty ridiculous what some drugs cost. You were diagnosed with RA at one point. Have you talked to your Dr. about saying that is still part of your Dx so you can get more financial help? Just a thought.
You are one tough woman for going through all this and still working! Even in the same day! I'd be on the couch having a pity party for myself :P
I hope the meds work quickly and you start feeling better soon. If this treatment does the trick it'll be worth the money. And maybe you'll have more energy for a different job? If you think you need to make more money.
I hope you and your husband are doing well also.
Please continue to keep us updated as everything progresses. You're in my prayers.
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
 
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Lets hope this needle is your magic wand!! I'm glad they didn't have to poke you more than once. That's a relief in itself.
I'm sorry about your insurance coverage though. Being Canadian, I don't have that concern and can't offer any suggestions. We need a "fix Michele" foundation!
Good news is tomorrow is Friday and you can rest (hopefully) this weekend.
All the best!
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Cassandra
Live like there's no tomorrow. Love like you've never loved before.
IBS A 20+ years, Chronic Migraines, Chiari Malformation (decompressed June 22, 2010), Brachial Neuritis, and ??? the list just keeps growing, but I'm still shiny side up! 
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The boss is in with a patient so I just have a minute to respond to you all. But, I do feel better!! Not wonderful but I definitely am less sore and hurt less! My hands are still swollen but not as painful. My chest still hurts but I a sure it will take some time for the granulomas to shrink in there. I am very hopeful!!
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Taking it one day at a time.....
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Yeah!!! 3 cheers for Michele I hope things just continue to improve. Go away pain!!!
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~Mary
Had surgery for rectal prolapse in Sept. '06 and feeling good now! Loving life with our IVF miracle #1.
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Yes, yes, pain be gone. Swelling away from thee. I hope it continues to get better and better.
Susie
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Good luck with this Michele. I hope you begin to see a change for the better, very soon! Wish I had a million bucks, I'd share some!
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Ladies & gentlemen take my advice, pull down your pants and slide on the ice.
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Well I sure hope this is one big step on the way to recovery. That bill, though! Omigosh! I'll be thinking of you. I hope there will be someone out there just ready to hand over some dough to help you out.
BIG HUGS!
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Flipada - IBS-C "It's a gas, gas, gas"
**Lauren**
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Got the IV on the first try?? HOORAY!! I can celebrate that!  
Are there any doctors you know who know of studies involving the treatment of sarcoidosis? Maybe the major research hospitals know of doctors conducting studies. Are there any help groups where you can ask fellow sufferers how they pay for their treatments? Those $$$ amounts really suck. Hard. 
Maybe we should all start playing the lotto. Or buying stock in remicade...
{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}}}}
~nelly~ 
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