Considering stopping Humira after 17 years, looking for advice.

[Liquid Bacon]

Hey guys, I have been on Humira since I turned 18, and I'm now 35 years old. I was part of the clinical trials and have been on the drug since. As far as controlling my Crohn's goes, the drug has done a great job. I'm happy and healthy; 5'11 and about 160 pounds. I've had no major side effects to speak of, and my bloodwork looks great.

However, for years I've experienced a bunch of symptoms that might be a Humira side effect; but nobody knows for sure since I've been on the drug my whole adult life. These include:

• Constant congested/runny nose; we're talking at least 350 days of the year.
• Bad scalp psoriasis that nothing will treat. 3 different dermatologists all blame the Humira but none of them have performed any real tests to try and confirm that.
• Misc small rashes that come and go in various parts of my body, which usually require steroid creams to treat. Again the doctors blame Humira.
• I'm also more fatigued than I feel like I should, but I've heard that's normal with Crohn's even when you have no symptoms. I'm also quite active, work long hours and always on my feet, so maybe I'm expecting too much there.

A lot of new treatments have come along since I started Humira, and my gastroenterologist has suggested trying one of them (such as entyvio) to deal with the skin issues. However this is risky, because the new drug might not work like the Humira does, and there's a real risk the Humira won't work anymore if I come off it and then go back on. I'm at a point in life where I can't afford to be sick either.

I'm seeking advice for what to do here.

 

[Pangolin]

Interesting that you note runny nose. My son had a constant runny nose that started while he was on Remicade, and it stopped sometime after he went off Remicade. However, it started up again sometime after he went off Entyvio and has continued for the last 6 months, so it's unclear exactly what's going on there.

The psoriasis probably is due to the Humira, and the fatigue may also be.

 

[NewOldGuy]

Hi,

Listen, please please consider carefully. You say that you are happy and healthy.
Let me share that I am close to your age and age of diagnosis, and back then
they prescribed those 5ASA.....
I have been struggling by diets, balloon dilations, massive rounds of pred, surgery.

It’s never possible to be sure, but if humira is what kept you in a great shape up till
now, please go to 2nd and even 3rd opinion before making any changes.

I am speaking from a very low point of a bad flare up, and in my view, your long lasting
remission is a real godsend....

Keep healthy and happy, best wishes

 

[Jo-mom]

I agree with NewOldGuy. You are doing well overall. You might want to check into what is causing your fatigue. Have all your blood work checked out and see if you have any mineral or vitamin deficiencies. It might not be related to the Humira at all.

 

[Older Crohner]

Hey guys, I have been on Humira since I turned 18, and I'm now 35 years old. I was part of the clinical trials and have been on the drug since. As far as controlling my Crohn's goes, the drug has done a great job. I'm happy and healthy; 5'11 and about 160 pounds. I've had no major side effects to speak of, and my bloodwork looks great.

However, for years I've experienced a bunch of symptoms that might be a Humira side effect; but nobody knows for sure since I've been on the drug my whole adult life. These include:

• Constant congested/runny nose; we're talking at least 350 days of the year.
• Bad scalp psoriasis that nothing will treat. 3 different dermatologists all blame the Humira but none of them have performed any real tests to try and confirm that.
• Misc small rashes that come and go in various parts of my body, which usually require steroid creams to treat. Again the doctors blame Humira.
• I'm also more fatigued than I feel like I should, but I've heard that's normal with Crohn's even when you have no symptoms. I'm also quite active, work long hours and always on my feet, so maybe I'm expecting too much there.

A lot of new treatments have come along since I started Humira, and my gastroenterologist has suggested trying one of them (such as entyvio) to deal with the skin issues. However this is risky, because the new drug might not work like the Humira does, and there's a real risk the Humira won't work anymore if I come off it and then go back on. I'm at a point in life where I can't afford to be sick either.

I'm seeking advice for what to do here.

 

[my little penguin]

So here is the thing
Humira may have triggered the psoriasis
Or since psoriasis and crohns have genetic links not be related to your humira usage
However once triggered regardless of the cause
If it’s drug related - once you stop humira
33% see no change in psoriasis
33% see the psoriasis go away
And 33% see the psoriasis get worse

fatigue comes with inflammation in your case skin /gut
Have they suggested methotrexate to be added to treat the psoriasis???

stuffy nose — have you been tested for allergies by an board certified allergist ?
Folks with autoimmune disorders have an over active immune system and sometimes develop allergies including year round ones (dust mites etc..)

my kiddo was dx at 7 (now 17) used humira as long as it would work (5 plus years )
He developed juvenile arthritis while on humira
He developed rashes on remicade
Later found out the rashes were sn auto inflammatory neutrophilic dermatosis syndrome (sweets syndrome )
Rashes stayed on humira until he was given meds for the sweets syndrome

He currently takes Stelara plus mtx (last 3.5 years )
Still has arthritis /crohns and takes other meds for allergies /asthma present since age 2

not worth the risk imo to change if a med works
Next med may not work as well
Or have other issues

took 8 months of flaring to get Stelara to work when Ds was switched from humira
That’s a very long time

 

[Older Crohner]

Liquid Bacon....I feel your concern. I too was on Humira and switched to Entyvio. When I was on Humira, I had a psoriasis-like rash at my temples/hairline, behind my ears and my left wrist area. They biopsied the rash on my wrist and it did not come back as psoriasis. But, it was persistent requiring a cortisone cream. I did well on Humira with every 4 week dosing. However, I eventually had to change to Entyvio because Humira caused a demylenating lesion on my spinal cord....no other sign or symptom of Multiple Sclerosis thank God. (It is interesting to note that not only is Humira linked to MS... IBD alone places you at higher risk). Entyvio worked well with every 4 week dosing and my rash disappeared. I would not have made the change based only on the presence of a rash. I saw a Multiple Scleroses specialist in Ft Lauderdale who said I had to discontinue the drug. As with any other change in meds, I had to bridge with steroids until the new med kicked in. The nice thing about Entyvio is it is gut specific and has a lower systemic effect. However it was approx. 2 yrs of frequency adjustments and steroids with supplementation of methotrexate to get the effect we wanted ....I have very persistent disease.

I agree with others in that if a rash is your main concern or even a runny nose (no infections), is it really worth changing? A significant increase in fatigue without reason would be of more concern to me. Get your labs, including thyroid levels. Diagnostic tools are always good Second opinion is not a bad idea. These are the tools needed to make a confident decision.

 

[Guerrero]

I also had many skins and strange nose conditions (very dry inside leading to infections, i had to put specific hydrating gels continuously) while on Humira.
I’m feeling much better with entyvio on that side (no more skin or nose issues).