Doctor wants me to start Humira

[treatmentskeptic]

I have been diagnosed with Crohns since I was 18 (12 years ago). I have had what I feel is a fairly moderate case. 3 doses of Remicade when first diagnosed worked beautifully and meant I could eat what I want with little concern for the next seven years or so. I even gained weight - too much weight. That eventually wore off and the Crohns flared up, causing 30 pound weight loss in a couple of months. It was bad for a year when my doctor recommended I go on Humira (previously just Imuran and Pentasa). I then discovered the SCD and, after 2 months on it, the bloodwork looked great, I felt great, and my doctor stopped suggesting Humira. He had never heard of SCD before and even started recommending it to his other patients. Since then, for the last 2 years, I can pinpoint any flare up to a specific item I ate because SCD works well for me. However, my doctor wanted a routine colonoscopy just to make sure everything was still fine even though my bloodwork continued to look fine. The colonoscopy revealed a lot of scarring and now he wants me to go on Humira again.

He did not tell me if the scarring was worse than the last colonoscopy three years ago, which I plan to inquire about. It just seems strange to go to such drastic measures when the bloodwork looks good and I can control the pain and discomfort by eating right. I have never had surgery and the doctor said even with the current scarring it would probably be another 10 years before I needed surgery at the current rate. Does Humira sound overly drastic in this situation to anyone else? Is going on Humira a life changing event for the worse when my crohns is already under control symptom-wise except for the scarring?

Finally, I couldn't find a great source for the cost of Humira to my insurance company. My remaining out-of-pocket to hit my maximum is only about $400, so my insurance company would bear essentially 100% of the cost. I don't see how they can continue that without jacking up my rates or out-of-pocket maximum. I want to prepare for having to pay significantly more in future years.

Sorry for the long e-mail. Just sitting here on the eve of needing to make this huge decision. Any advice would be greatly appreciated! Thanks!

 

[Raeganhill]

I've been on humira it's for the last 4 months and it's easy to take and I don't feel as though it's been a life changing event. I'm on humira because I had a lot of swelling and got an abscess so a different reason than you'd be on it. I can understand your apprehension because it's so expensive. I didn't feel sick at all when they put me on it. I was so confused that I needed to be on something so strong when I felt fine. Get a second opinion if you aren't sure about being on it.

 

[Miss Underestimated]

Your health insurance premium is not based on your claims history.

 

[jjk308]

Your experience with SCD is typical. Regardless of diet Crohn's does not go away and even if your gut feels better the damage of Crohn's will increase.

Try Humira - so far its proven superior to other treatments with fewer side effects. And your insurance company should be happy since a bowel operation every few years would be a lot more expensive.

 

[Jennh]

I have been taking humira shots for over a year. I only have a $5 copay for a three months supply and my rates did not go up. I have federal employee insurance though. The shots are not bad, and actually were life changing for me since this was what my dr went straight to after finding out I had crohns. I went from those excruciating-labor-like pains to no symptoms in a week (this doesn't mean crohns went away just relief). 6 months after starting humira my crohns was in remission. Hope this helps. Also some people get a crohns related arthritis (I am one of those lucky ones) Humira helps that as well.

 

[afidz]

You have to remember that Crohn's can do damage silently, so even if you are feeling great and your blood work is great, your body is still at war.
SCD is a great diet, I have heard great success stories from people who have tried it, but I don't think its enough on its own. If you continue to leave it untreated you risk severe complications from a flare you didn't know was going on until you find your self in the ER screaming in pain and then waking up the next day from emergency surgery. It sounds scary but it happens all the time. Crohn's is a very serious, very complicated disease that needs to be taken seriously. I hope I am not scaring you, but I just want you to look at it from a different point of view
As for insurance, I have BCBS, plus I think I am using the prescription card so I get it for $5 a month