How to know medication is working?

[WAdesert]

I've never had symptoms of Crohn's except epigastric cramping a couple times a year. I vomit, then it goes away for another 6 to 12 months. Yet because I have 2 small bowel strictures and the pill cam, and DBE biopsy showed active inflammation, one of the GI doctors says I have Crohn's. He wants me on azathioprine and prednisone until the insurance approves the Humira. Which I'm almost certain they won't because they require other drug protocols to have failed before it's authorized.

With no flares and no symptoms, I so very afraid all of these medications are going to make me feel like crap. Plus, I have no way to know if anything is working because I have nothing visible to "get better". I don't want to take any of them.

Can anybody out there who is asymptomatic (not in remission but never had most Crohn's symptoms) tell me about what medications they've taken, side effects experienced, why the medications were prescribed; how you know they are helping? I'm trying to decide whether to do the drugs or opt for the surgery the other GI doctor recommends - who says I don't have Crohn's.

 

[Catherine]

Do you have any signs in bloods test. Eg anemia. Or faecal calprotectin?

We know my daughter medication is working because her anemia got better on azathioprine.

 

[WAdesert]

This odyssey started because I was microcytic iron deficient anemic in May. But that's now resolved. Whether it's because I've been taking oral iron (325mg 65 elemental iron) twice a day or because I'm no longer have (occult) bleeding in the gut I have no idea.

All my blood work comes back **COMPLETELY normal** including c-reactive protein and sed rate. The only elevated marker is the fecal calprotetin which was 210. I did have both negative (in May) and positive (in August) Fecal Occult Blood tests.

How did your daughter feel on the prednisolone? Does she have any symptoms from the aza? I see that she did have a fistula. Was that treated only with these medications?

 

[george john]

I've had Crohn's since i was 18 had 2 surgery's. I'm now 62 had all the conventional treatments was on Prednisone for over 30 years, with all side effects. Since 2005 been on Humira, started with shot every 14 days This past year I started shots every 7 days. I was never told that if i stopped taking Humira my body could build up Immunity Resistance to Humira. This past April I couldn't shake a head cold so I quit taking Humira for 4 weeks. thinking I would get over the head cold, and start injections again. WOW I got so Ill from stopping, and the flare was one of the worst ever. Pain's in my lower left side and all the other fun effects of a full blown Crohn's flair, that put me in the hospital for 7 days.When I told doctors why i stopped the Humira, that's when I was told about body building a Immunity to Humira after lot of blood testing to check if i built Immunity to Humira, had double loading dose of Humira. i was ok no immunity to it. so now I will keep on this stuff till new medicine comes along.If I can help anyone with information just ask. George

 

[WAdesert]

I'm so scared of all these medications I don't want to take anything. I keep reading about the taper from pred making people feel bad. It seems most likely from the disease flaring if I read things right.

I'm supposed to start pred at 40mg and taper for 11 weeks. Asymptomatic so if I start feeling bad when the drug drops to a lower level I would have to believe I've made myself hurt because of taking it. Of course I'm looking forward to all the pred side effects too.

 

[Catherine]

When Sarah was remission she could maintain her iron without supplements. In October her faecal calprotection tested at 398, she had no symptoms. We add a new drug Melazaline and increased azaphrione. She has started to experience pain that she associated with Crohn's again it's last about 8-12 hours. She iron levels have dropped. She does not have anemia but some numbers on full bloods are out of range.

She has no side effects from medications either, accept when she did a 50mg course pred with a 4 weeks at 50mgs.

As far as we know she still has a small to small bowel fistula. As it giving no symptoms they will leave it alone.

At this time we have no other drug options as her CDAI is too low to qualify for other medications.

Crohn's without any symptoms is very dangerous. Our journey to dx.

http://www.crohnsforum.com/showthread.php?t=60021