Humira Advice

[SomeoneILoveNeedsACure.]

My partner has had Crohns disease for about 5 years now, he's tried numerous treatments (including surgery) without any success of achieving remission.

He has been recommended Humira, but we are both terrified of the risks involved...cancers and lymphoma, especially as he is mid thirties and we hope to start a family.
Every doctor we see says different things and we just don't know what to do

Can anyone share their experiences with Humira? Good or bad

 

[Scipio]

I'm not on Humira, but I am on another biologic drug, Stelara. My advice is to try the Humira. It provides the hope of real remission, one that hopefully will last for years. Biologics are the most powerful and effective drugs currently available to treat Crohn's.

I know the side effects and risks of the drug sound scary. I hesitated for years before starting on a biologic. Now I wish I had started much sooner. The side effects from Humira a real but they are very rare. The intended of effect of putting Crohn's into remission is also real and very common.

Look at it this way: the biggest risk to health of a Crohn's patient is not the side effects of any of the drugs. The biggest risk is the complications and lasting damage that uncontrolled or poorly-controlled Crohn's will do to the patient's gut.

 

[my little penguin]

So my kiddo is almost 16
Was dx with crohns at age 7
He was on humira from age 9 to almost 14 so 5 years
Through all of grade school (think lots of runny nosed kids)
He was fine
No issues
He had to stop due to non ibd surgery and humira didn’t work when he restarted it
So he was switched to Stelara

good luck

 

[SomeoneILoveNeedsACure.]

Thank you for sharing your experience with Humira. I hope your son is doing well on Stelara

 

[SomeoneILoveNeedsACure.]

I'm not on Humira, but I am on another biologic drug, Stelara. My advice is to try the Humira. It provides the hope of real remission, one that hopefully will last for years. Biologics are the most powerful and effective drugs currently available to treat Crohn's.

I know the side effects and risks of the drug sound scary. I hesitated for years before starting on a biologic. Now I wish I had started much sooner. The side effects from Humira a real but they are very rare. The intended of effect of putting Crohn's into remission is also real and very common.

Look at it this way: the biggest risk to health of a Crohn's patient is not the side effects of any of the drugs. The biggest risk is the complications and lasting damage that uncontrolled or poorly-controlled Crohn's will do to the patient's gut.

Thank you for your advice, they do say the life threatening serious side effects are rare and that biologics put many crohns suffers into remission. It's just a shame there is so little research available at the moment

 

[aypues]

The patients that got the worst cancers were all on combination therapy for over 2 years with an anti tnf and either 6mp or imuran (thiopurines), AND were mostly young men (90%) under 35 years old. Sounds like you‘re in the clear.

I was really worried about this too when I first started since I was 38 but nothing ever happened to me on humira, remicade, stelara, or entyvio now, and I can’t tolerate immunomodulators.

There is newer conflicting evidence that combination therapy isn’t in actuality more effective than just getting tnf levels correct with proper dosing. It seems like the thiopurines are more to blame for the aggressive cancers than the anti tnf’s - documented cases with thiopurine monotherapy.

 

[voiceforrecovery]

not sure if your partner has started humira but I was on it for around 5 years. After mesalamine stopped working and I had to get resection surgery my doctor recommended it. I regret the day I ever agreed to take it. I developed Hodgskin's Lymphoma this past April. Lucky I caught it during stage two. I wouldn't recommend this medication to anyone. People take the side effects lightly because the doctors try to assure that only a small percentage of people will develop those symptoms. The only thing Is what if you are part of that small percentage.

My partner has had Crohns disease for about 5 years now, he's tried numerous treatments (including surgery) without any success of achieving remission.

He has been recommended Humira, but we are both terrified of the risks involved...cancers and lymphoma, especially as he is mid thirties and we hope to start a family.
Every doctor we see says different things and we just don't know what to do

Can anyone share their experiences with Humira? Good or bad

 

[SomeoneILoveNeedsACure.]

I'm so sorry to hear that. Did you take any other treatment with Humira? I think there is higher risks with combination treatments.
They told us the chances of Lymphoma were almost none!

 

[SomeoneILoveNeedsACure.]

The patients that got the worst cancers were all on combination therapy for over 2 years with an anti tnf and either 6mp or imuran (thiopurines), AND were mostly young men (90%) under 35 years old. Sounds like you‘re in the clear.

I was really worried about this too when I first started since I was 38 but nothing ever happened to me on humira, remicade, stelara, or entyvio now, and I can’t tolerate immunomodulators.

There is newer conflicting evidence that combination therapy isn’t in actuality more effective than just getting tnf levels correct with proper dosing. It seems like the thiopurines are more to blame for the aggressive cancers than the anti tnf’s - documented cases with thiopurine monotherapy.

Thank you, that was really helpful!
He isn't on a combination treatment as I know that can increase the risks.
He is only 34 so I'm still terrified, but if this works it would be worth the anxiety

 

[voiceforrecovery]

I was only on humira and it did manage my Crohn's well for the first three years. After that I had a few flare ups but nothing major then came the lymphoma. If u have any history of cancer at all I wouldn't take it. I had no prior history of cancer but that can definitely inc your chances of one developing FM the drugs. Good luck to you both.

I'm so sorry to hear that. Did you take any other treatment with Humira? I think there is higher risks with combination treatments.
They told us the chances of Lymphoma were almost none!

 

[SomeoneILoveNeedsACure.]

Thank you for sharing, there is so little information and I don't trust our doctors much. We agreed he will only take Humira for a few years max while we have a family, as some of the other treatments can cause infertility.
I hope you find a better treatment! It is a horrible condition