Opinions requested re: dr & meds

[ruhereyet]

Hi all -

A little background...

I was dx with Crohns about eight years ago. I was put on Asacol, and not realizing the importance of sticking to a maintenance drug, I stopped after about three months (after my flare was over).

Fast forward to August 2013...

Terrible abdominal pains and diarrhea. CT Scan and Colonoscopy show that Crohn's has manifested throughout my entire colon. The entire thing is diseased. New GI puts me on Prednisone and Humira. The Prednisone gets me into a quick remission, but the side effects are bad, so I taper and stop. The Crohn's symptoms come back. Humira isn't cutting it. GI adds Pentasa, Entocort, and strongly encourages me back on the Prednisone, which I do (I've been on all four of these since mid-January).

In the meantime, I've developed high blood pressure and occasional migraines. My primary care doctor says this could be a result of the Humira. GI doc says he doesn't think so. But, I've added Metaprolol (for BP) to the cocktail of meds.

I tell my GI doc that Humira isn't working for me. I've never been on other biologics before. He says he wants to test me for the Humira antibody. If I have it, then he'll switch me to Remicade. If I don't, then he'll increase my Humira dose to weekly (opposed to every other week). His office staff is working with my insurance carrier to get this test approved, which will now take 3 additional weeks.

This past week, I developed Pneumonia. My PCP contributes it to a weakened immune system due to Prednisone and Humira, and I am getting downright frustrated that I'm continuing to take meds that aren't helping my Crohn's at all.

If you were in my shoes, would you get a second opinion from another GI Doc? Mine is reputable and was referred to me by my PCP, but I'm starting to feel as though he's so sold on Humira that he's not willing to consider other treatments.

Am I being unreasonable with all of this?

TIA -
Cathy

 

[afidz]

I am sorry you are having a hard time finding the treatment that works best for you.
How long have you been on Humira? It can take around 3 months for it to reach theraputic levels in your body, sometimes longer. It is not uncommon for a dr to up the dose to every week if the body is not responding to it the way that it should.
One of the side effects of Pentasa is headaches, did they start before or after you started taking it?
As far as getting a second opinion, it never hurts. Its your body and the more information you have to make an informed decision on how to treat it the better, in my opinion. Your GI doesn't have to know that you are getting a second opinion either.

 

[ruhereyet]

I've been on Humira since Oct 1 - so five months now.

Headaches came before the Pentasa.

Thank you for your quick reply.

 

[afidz]

Do you feel like the Humira helps at all or is there absolutely no change after your dose? or in the opposite direction, do you notice you feel worse right before your next dose?

 

[ruhereyet]

I feel no change at all. And, I'm not sure if the Pentasa and Entocort are working, either, since I've been on Prednisone for the entire time I've been on those two.

I was about to start to taper the Pred, since my stools were becoming more solid, but with the antibiotics I was given for the Pneumonia, the diarrhea has come back, so I have to start counting days again (GI says I have to have solid stools for seven consecutive days before I should taper the Prednisone).

 

[afidz]

Pentasa is generally used for UC, but doctors do like to use it in conjunction with other meds for Crohn's, but its tough to say whether or not it is effective, it is only treating the first layer of your intestinal wall