Tuesday, January 27, 2015

GI Doctor Visit and decisions

I went to my Gastroenterologist (GI) doctor and talked to him about many topics.  However, a summary of the meeting is:

  1. I still have fungal pneumonia
  2. The doc wants to know how active my CD is
  3. I'm approved to start biological therapy
I get to sign up for Remi infusions again. Doctor and infusion center working on the details. I'll post my date when they call.  This will be my fourth infusion appointment :| I had to cancel the previous three appointments due to last minute discoveries of complicating infections.

My Fungal Pneumonia

The big thing I'm wrestling with right now is I have one of those serious infections that can kill you if you start Remicade. After 4+ months of intensive therapy, my infectious diseases (ID) doc has approved me to use Remicade (I'm responding very well to anti-fungal therapy). My GI wants me on combo therapy - Imuran (an immune suppressant) and Remicade (also an immune suppressant) to get the CD under control.

I've decided to push back on the use of Imuran and insist on monotherapy with just Remicade until I've completely cleared the pneumonia and there is no sign of infection.

I figure if we err on the side of caution, I'll still be around to fix the medications and dosing problems. If we err on the side of too aggressive treatment,
then it could kill me in rather short order and I won't get a chance to learn from my mistakes.

Interesting side-note about the pneumonia - back in September the blood titer for Cryptococcus tested positive.  The research I've done indicates this means the organism is circulating in your blood stream and could be spreading.

My latest blood titer for Cryptococcus tested negative.  This does not mean the infection has resolved.  However, it does mean the organism is no longer circulating (which is still very good news).


My Crohn's Disease

Because I've had surgery and my CD has become active again, my GI wants to get a new colonoscopy of the affected portion of my bowel.  He'll be better able to judge the level of activity and use the images as a baseline point for the biological therapy.

However, I also suffer from
gastroesophageal reflux disease (GERD) and have not had that looked at in over ten years.  Because I've mentioned some problems with this, he recommended that I get an endoscopy at the same visit as my colonoscopy.

These are scheduled for March.




Starting Biological Therapy


Remicade has been around longer and more data has been collected about it. Remicade shows better effectiveness over the first 12 months of treatment than any other biological. However, after 12 months the biologicals all perform similarly. I also believe (but am not yet certain) that it performs better on fistulizing CD.

Remicade has an increased risk of allergic reaction compared to other biologicals - however, you still have a risk of allergic reaction if you use other biologicals like Humira.

Today, I chose to start with Remicade over Humira but I don't feel that strongly about one over the other.



This is my Humira vs Remicade pro/con list:
Remicade - 

  1. has more data for treating Crohn's Disease
  2. has more data for healing fistulas
  3. better chance of remission in the first year, 
  4. (for me) medication is substantially cheaper 
  5. GI prefers Remi -> Humira transition over Humira -> Remi transition

Humira - 

  1. same odds of long-term benefit as Remi 
  2. (for me) is over-all cheaper (no nursing or infusion center costs) 
  3. less chance of allergic reaction to the drug

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