Had my first Remicade infusion today

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disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 4/25/2008 4:55 PM (GMT -7)   
and accept for the part where I had to pay $500 it went very well, the only annoying part was they kept taking my vitals every 20 minutes so napping was out of the question.  And the fact they made me sit there for 1/2 an hour afterward to make sure I felt OK.
 
It's been about 4 hours and I'll only have a mild dull headache, but that might be from the hour of trafffic I sat in the get home.
 
Now once Remi-start reimburses my $400 of the $500 I paid I'll be happy. 
 
Round 2 is in 2 weeks I'll be cycled of PRED by than too!
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort
40 MG Pred cycle stating 3/26


tjf
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Date Joined Dec 2005
Total Posts : 3238
   Posted 4/25/2008 5:09 PM (GMT -7)   
Thanks for the update! Keep us posted on how it is working. Especially your experiences w/ Remi-start so we can share w/ other members.
Tabitha (Tab)

100mg Azathioprine, 2 Fibercon, Colazal-9 a day, Acidopholis Pearls, Nexium

http://www.healingwell.com/donate
Co-Moderator UC Forum


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 4/26/2008 5:00 AM (GMT -7)   
My main concern about, the Remitstart program it will take awhile for them to processing my claims i think I will be on my 3rd infusion before they start kicking me money back.

I feel good this morning, no headache or anything, they said I may feel light headed but I don't as of yet. I opted to refuse any bendryl or other medication.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort
40 MG Pred cycle stating 3/26


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 4/26/2008 6:28 AM (GMT -7)   
I didn't take bendryl of tylenol for my first 2 infusions and it didn't make a difference. i took some before my third and it just made me kinda sleepy.

Glad to here remi start is helping out. Sucks that it takes so long but at least it's available. 500 is a great deal though!!! Out of pocket for me would be about 10,000 for one infusion.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
Remicade started 3/1/08...just had 3rd infusion


Meesh
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Date Joined May 2006
Total Posts : 619
   Posted 4/26/2008 12:32 PM (GMT -7)   
They took my vitals every 20 minutes the first time and made me hang on a bit after I finished as well, but subsequent infusions they just take my vitals a couple times throughout the process and I can leave as soon as it's done. I'm usually there two and a half to three hours, depending on how quickly they get me hooked up and the Remi up from the pharmacy.

Here's hoping to good results!
Diagnosed UC April 27, 2006
7 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08
Lialda, 4 tabs in the morning; Protonix; Lexipro 10 mg; Prednisone 4/27/06-present, tapering now, alternating 5/0 mg. daily. Xanax as needed. Daily supplements: multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; 12/1 - 12/29/07 weekly Venofer (iron) injections; Off of the following:Entocourt EC; Rowesa; Asacol; Colazal; Imuran (extremely bad reaction 2/07)


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 4/27/2008 5:21 AM (GMT -7)   
10,000 is pretty insane Kelly, it really bothers me to see so much disparity in health coverage in this country.
 
 
My self-employed parents may hundreds sometimes 1000's of dollar a month in medical where as I working for a large corporation pay all of $20 a month pretax
 
I wouldn't have even had to pay the $1000 for remicade if I had elected for my company's best plan, something I will do in 2009.
 
My main issue is that I feel like my health needs are keeping me chained to a job I don't really care for.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort
40 MG Pred cycle stating 3/26


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/27/2008 5:27 AM (GMT -7)   
Disco, one improvement in the whole insurance thing is that you can change jobs now, and the new employer's insurance has to cover you with no waiting period. Prior to about ten years ago, there was usually a 12 month wait for coverage on pre-existing diagnoses with a new employer, and in some cases you could even be denied insurance. You'll just have to do some detective work on the company's insurance coverage, as you don't want to ask too many questions about it in the interviews.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 4/27/2008 6:44 AM (GMT -7)   
I know that but if I switch jobs I have to start over with paying off a new deductible and out of pocket maxium with the new insurance plan.

currently my ded is $500 and my out of pocket max is $1000 ($1500 total) if I were to switch jobs I'd have to start over again with what ever the new plans terms are.

Bottom line is I might not be able to stay on remicade long term, who knows if I'll have the $1500 next year, Remistart only helps you for 1 year (to get you hooked)

The thing should just be covered like any other prescription. Plus God forbid I ever want to go in to business for myself, I'll never get covered.
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort
40 MG Pred cycle stating 3/26


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 4/27/2008 7:21 AM (GMT -7)   
Yes the "clauses" in insurance policies will kill us. Mine is covered the same as a specialist office visit ($35 copay) because it is done in the doctor's infusion center. If I went to the hospital to get it done, it would kick in the deductable, then would pay 90% after that. I'll be moving soon, and I hope I can find a practice that operates their own infusion center.

And yes, we're pretty much uninsurable. I was turned down for long-term care insurance because of the UC.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Asacol, Rowasa, Pentasa, Prednisone, Entocort, Azathioprine
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
The information I share on this forum is based only on my own experience and study. It is important to consult your health care provider when making health-related decisions.


surfing sw
New Member


Date Joined Apr 2008
Total Posts : 1
   Posted 4/27/2008 7:07 PM (GMT -7)   

 

I am scheduled for my first Remicade infusion in a couple days.  I am a little nervous.  What should I expect.  I travel alot and am going to the rain forest in a couple of months.  Anybody have any advice?


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 4/27/2008 8:34 PM (GMT -7)   
Disco, My husband is in the same boat. He doesn't like his job but must stay so I have health insurance. I haven't been able to work for awhile and he's been a rock. Our insurance sucks but as soon as I can get a full time job teaching we will be set. Great insurance through the gov't. And then I have promised him he can do anything he wants. We are already thinking about business he can open or other feilds he might like (he works in insurance oddly enough and hates it!)

Even if i dont'find a job this year he is switching to another company but not until fall/winter becuase we too are paid up for the year and if we switch now we end up paying more. If the system uses us, we use it right back.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, 5mg pred, 150mg Imuran
Prontonix once daily for acid reflux, zofran twice daily for nausea, darvocet for pain
Remicade started 3/1/08...just had 3rd infusion


disco
Regular Member


Date Joined Jan 2008
Total Posts : 154
   Posted 4/27/2008 9:19 PM (GMT -7)   
surfing sw said...

 

I am scheduled for my first Remicade infusion in a couple days.  I am a little nervous.  What should I expect.  I travel alot and am going to the rain forest in a couple of months.  Anybody have any advice?


It's a peice of cake if you tolerate well, basically you get to relax for 3 hours, read a book, watch a DVD what ever.  Just don't count on napping because they check your vitals every 20 minutes + my nurse was a 'talker' 
Diagnosed in spring 2005 at age 28
Currently on 12 asacol pills a day + Entocort
40 MG Pred cycle stating 3/26


Meesh
Veteran Member


Date Joined May 2006
Total Posts : 619
   Posted 4/28/2008 4:45 PM (GMT -7)   
Disco, the infusion itself is a piece of cake, but your immune system will be compromised and you're going to be susceptible to infections, fungus, bacteria ... be careful of the water, wash your hands frequently, etc.

Judilyn, I bought long-term care insurance for myself and my husband when I was 43 and he was 48. While the younger you are when you buy it, the cheaper it is, I was a little worried I was buying it TOO early and would be paying the still hefty premiums for many years longer than we'd be needing to. Well, a year after I bought it and I even qualified for a discount for being so healthy (!!) I got diagnosed with UC and would not be able to purchase it. Well, now they're stuck with me, aren't they!

Meesh
Diagnosed UC April 27, 2006
7 Remicade infusions: 7/21/07; 8/18/07; 10/13/07; 12/15/97; 1/26/08; 3/8/08; 4/19/08
Lialda, 4 tabs in the morning; Protonix; Lexipro 10 mg; Xanax as needed. Daily supplements: multivitamin w/folate; Culturelle; Fish oil capsules, calcium chews and/or Tums; 12/1 - 12/29/07 weekly Venofer (iron) injections; Off of the following: Prednisone 4/06-4/08; Entocourt EC; Rowesa; Asacol; Colazal; Imuran (extremely bad reaction 2/07)

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