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cra43
Regular Member


Date Joined May 2008
Total Posts : 172
   Posted 6/25/2008 2:43 PM (GMT -6)   
Hi everyone.   I wrote back awhile ago, asking about Remicade.  My son is sick of taking Prednisone, and he has a flareup 3 months after he is done tapering off.  His present doctor isn't keen on the Remicade.  He said he'd have to keep getting blood work etc... Before my son was taking 6 Asacol a day and 3 6MP's (Purenithol)  a day.  Now the doctor wants him to just take 4 Asacol every OTHER day, but still take the 3 tablets a day of the 6MP's.
Does anyone else take such a dose??  My son is still tapering from the prednisone now, 20mg a day, until he is down to 1/2 pill a day (5mg)  so he is kinda in a remission. It always heals him quickly,  But after that, in 3 months, he'll start to flare again.  Same ole routine.
Now, he has only 5 B.Ms in the morning, with no pain or blood.  Now, this may sound gross, but all you guys are in the same boat, so I gotta ask this.  My son starts out in the morning, with a fairly normal BM. solid, and no mucus.
Then the 2nd, 3rd, still kinda solid, but a little more loose.
by the 4th or 5th trip to the bathroom, he just has a pile of mucous, that looks all stringy etc but still the urge to go.No pain.  Then he knows he is done for the day.  He has to get up at 6:00 a.m.  just to finish all the bathroom trips before he leaves for his jobs around 8:30.  He doesn't want to have to stop at a gas station.
I know all this because I , as a concerned mom, made him tell me exactly what is going on. Trust me, I don't look, just take his word, since I witness all the trips in and out of the bathroom.  :-)  It is hard to watch this though.
Anyway, I also mentioned that he has no insurance and someone gave me the number of PAP.  I called. talked to the lady.  She sent me the forms for Remicade assistance , if he qualifies.  Then my son's doctor nixed the idea of Remicade.  My son, may have to change doctors if he wants to get it. Does anyone on Remicade have to get constant blood work?  And his doctor also told him that if he missed a dose, he'd be in trouble, and he couldn't start it up again.   He just wants him to stay on the 6MP and The Asacol Does anyone out there do that, and is it helping?  This is getting nerve wracking but I like to hear all or your experiences.  Thanks for reading this long post,  I appreciate any answers.
Just a mom.
 

jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 6/25/2008 5:08 PM (GMT -6)   
When I was on both Remicade and azathioprine, I had blood work every 2 months. That was the same as when I was on just the Azathioprine. Now that I'm off the Azathioprine, I just get blood tests every six months.

As far as missing doses of Remicade, that is a problem because he'd probably go right back into flare. If I'm more than a week late, I'll start feeling different. And about 40% of people who stop Remicade aren't able to tolerate it if they try to restart, but that's by no means a sure thing.

Be aware, though, that there are other costs involved with Remicade. There are charges from the doctor, hospital or infusion center that would have to be covered. These will vary greatly depending on where the med is given. You might also look into Humira, it's another drug in the same category as Remicade, and you give it to yourself at home, so the additional costs aren't there.

I've been on Remicade for more than two years, and it's given me my life back. I hope this works out for your son. One bit of unsolicited advice: just about everything they treat us with is expensive. If there's any way at all he can get insurance, it would be a really good idea. Maybe through a different empolyer, or some states have special high-risk pools.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from steroid therapy.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 6/25/2008 8:44 PM (GMT -6)   
He still should be getting blood work with the asacol and 6 mp. You need to be careful when you take those 2 together....the asacol opens up the reseptors (or so it was explained to me) for the 6 mp, so you might need a lower dose. You don't want your liver to become toxic, so keep getting your blood work done.

I have been on remicade for almost 4 years now. It has given me my life back. I was once 5 weeks late for an infusion because I was sick, but I was still able to get it, and resume my schedule. The dr. means that if you are off of it for a year or more, then you might have problems starting it again....reaction or it might just not work.
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