Starting Humira

[Cronie1]

Hi everyone

Over the past few months I have been trialling azathioprine (25mg) which I was intolerant to and then 6MP (25mg) which I was also intolerant to. By intolerant, I mean I suffered awful side effects (blacking out, bleeding, frequent urination, frequent infections, etc).

My GI is now recommending I try Humira, but given the reactions I've had to the other meds so far, I've very anxious about the possibility of side effects with such a strong drug. What do you think the chances are I'll experience significant bad side effects?

I currently weigh 38kg, so have started liquid diet only (modulen) to bridge the gap in the meantime. Are there any other alternatives that anyone could suggest? I'm just worried that my body will react badly to any immunosuppressive drug.

Although I can take budesonide ok, it was just less effective the second time for me. Any thoughts appreciated.

 

[ronroush7]

Hi. I would say you could try the Humira and then if you notice side effects let the doctor know asap.

 

[Deleted member 431298]

I have had a positive effect from Methotrexate after anti-TNF was no longer an option for me. Maybe that could be worth considering?
I wish you the best of luck and hope you will find something that works.

 

[Cronie1]

Hi OleJ

Thanks for your response. We were hoping to start a family in the near future which is why methotrexate wasn't considered (I assume)...also anxious as with the previous side effects my IBD nurse just ignored my reports for 2.5 months and I just had to live with them...

 

[Deleted member 431298]

Hi OleJ

Thanks for your response. We were hoping to start a family in the near future which is why methotrexate wasn't considered (I assume)...also anxious as with the previous side effects my IBD nurse just ignored my reports for 2.5 months and I just had to live with them...

That makes alot of sense. MTX and getting pregnant is a nogo, regardless if the male or female is taking it. If it is the male who is starting treatment he a sperm sample made prior to starting treatment, and frozen for later use, may be a solution. Obviously that is not possible for the female part.

 

[my little penguin]

Ds was on humira for over 5 years without any side effects
From age 9
No extra infections
He only stopped due to surgery (no Crohns related )
Which made it ineffective once it was restarted

He is now in Stelara

Good luck
Modulen takes 6-8 weeks to work to reduce inflammation
Afterwards to gain weight
We used formula plus food with humira
Once humira is effective if you supplement food woth

 

[Cronie1]

Thanks mlp, that's a bit more reassuring for me I guess. It's just difficult when my nurse doesn't listen to me about side effects, and I know it's normal to expect some. It's just when they are very bothersome, that it's worrying to me. Thanks for your reply.

 

[my little penguin]

Remember everything has POSSIBLE side effects
Including Tylenol
Most docs don’t list them out for you like they do for humira
We love biologics here