Out of remission after resection... :(

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jmiller056
Regular Member


Date Joined Feb 2009
Total Posts : 57
   Posted 3/2/2009 6:33 PM (GMT -7)   
Hey everyone. My CD returned after my resection 4 years ago, and I have some questions about treatments I have not tried in the past. My doctor had mentioned Humira until the appt right before my scope when he talked about a newer drug with some risks. I am concerned that he wants me to try Tysabri, but the risk of PML has me too scared. Also I don't understand the why they watch you so closely when you are on it because once you contract PML, you are essentially screwed am I right? What do Tysabri users have to say about this? If my doctor does want to put me on Tysabri, I think I will ask for Humira instead... Finally I had a question about course of the treatments. My dad's insurance plan will only supply me with 5 years worth of Humira. My question is, how many months worth of the drug does one normally take before stopping the injections. Also, I never really understood what remission means... Does it mean your CDAI is just lower or do the ulcerations actually heal?

Thanks for reading.
Dx Crohn's Disease in 2001 at age 14. Lost 3 inches of colon and 7 inches of ileum in 2004 bowel resection.

CD returns in October 2008 at age 22.

Current meds: Pentasa: 3000 mg; Fibercon: 2 pills 3x; Imodium: 2 pills 3x

Ineffective Drugs: Imuran, Entocort, Remicade


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/2/2009 6:44 PM (GMT -7)   
??!! They will only supply you with the drug for five years? That's absurd! Did they say why???

Indignant on your behalf,

Ivy.
Co-Moderator Crohn's Forum.


jmiller056
Regular Member


Date Joined Feb 2009
Total Posts : 57
   Posted 3/2/2009 7:06 PM (GMT -7)   
The limit is my understanding, but maybe I misunderstood. On the insurance website it mentions a cap on coverage after 5 years. But I guess I could have misunderstood.
Dx Crohn's Disease in 2001 at age 14. Lost 3 inches of colon and 7 inches of ileum in 2004 bowel resection.

CD returns in October 2008 at age 22.

Current meds: Pentasa: 3000 mg; Fibercon: 2 pills 3x; Imodium: 2 pills 3x

Ineffective Drugs: Imuran, Entocort, Remicade


Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 3/2/2009 8:15 PM (GMT -7)   
How is it that you will be able to stay on your father's health insurance for another 5 years? It is my understanding that most children covered under a parent's policy have until age 23 if in school fulltime. otherwise they are off once they graduate high school or turn 18. You need not answer those questions - I am merely just curious.

Humira is prescribed to a patient for as long as they continue to benefit from the medication. Since Humira was onl;y approved for CD in about 2006, there is not a lot of information on patients being on it for really long periods of time. RA patients have been taking Humira for longer than CDers so I would imagine some have hit the 5 year mark.
Moderator Crohn's Disease Forum
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, and a host of other medical problems.
 


jmiller056
Regular Member


Date Joined Feb 2009
Total Posts : 57
   Posted 3/2/2009 9:04 PM (GMT -7)   
Well, I get booted from my dad's current plan in about two years when I turn 25 provided I am still a student and he doesn't lose his job to the recession/depression. So if there really is a cap on my current plan, it really doesn't matter. The reason I asked that is because if it is a common practice to put a cap on drug coverage, I wondered if patients go long periods without Humira and other expensive drugs after remission so that they do not meet the cap too soon.
Dx Crohn's Disease in 2001 at age 14. Lost 3 inches of colon and 7 inches of ileum in 2004 bowel resection.

CD returns in October 2008 at age 22.

Current meds: Pentasa: 3000 mg; Fibercon: 2 pills 3x; Imodium: 2 pills 3x

Ineffective Drugs: Imuran, Entocort, Remicade

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