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How bad is the immunosuppression on Imuran?

I read the RX info sheet... Scary!... stay outta the sun, avoid anything that could cause bruising... avoid exposure to infection... dont touch eyes or nose without washing hands ... etc

Question is... I have 2 kids that I homeschool. We take field trips and such to museums etc... just how worried should I be about exposure?:shifty-t:
 

DJW

Forum Monitor
The adjustments I made when going on Imuran:

Wear a hat outside
Put on sun screen
Washed my hands frequently
(acually none of that was really a change - I was just more vigilant)

When I was put on remicade I started carrying a smll bottle of hand sanatizer.

I'm in hockey rinks all winter with small kids. I've had no issues.
 

my little penguin

Moderator
Staff member
DS started 6-mp at age 7 ( second grade )
Switch to MTX in between
Added remicade (3rd grade) then switched humira (during 3rd grade)
Added humira plus MTX prior to 5th grade.

My point over the past three years of immunosuppresants and biologics
He was not any sicker
The dosing side effects are mainly for chemo taken at 500 times the Crohn's dose
He was my least sick kid from colds etc...and was constantly around coughy sneezy kiddos
Only the sun has been an issue so lots of hats/sunscreen
Otherwise your good

Good luck
 

Tesscorm

Moderator
Staff member
My son has been on remicade for almost two years and, so far, I haven't found that it's made a big difference in catching sicknesses. His roommate developed mono last year and was sick for a month before he was diagnosed... even in such close quarters, my son did not get sick.

He did have an extremely bad sunburn this past summer, worse than he's ever had (so I think remicade may have played a part), however, some protection/diligence would have helped avoid the burn! He was at the beach all day but, as it was cloudy, he didn't think he needed suncreen! :eek:

He was recently diagnosed with either molloscum or folliculitis. At dx, doctor was fairly certain it was molloscum - however, if this was the case, it cleared up within 4-6 weeks even though all I read was that it usually takes months! His GI did say being immunosuppressed can leave you vulnerable to molloscum, however, it certainly didn't take long for his body to fight it off. (Given how quickly it healed, I'm now thinking it was probably folliculitis.)

Although this is a bit contrary to our experience??, his GI once told us being immunosuppressed doesn't necessarily leave you vulnerable to catching things but you may have a tougher time fighting things off.

:ghug:
 
Imuran, for me, has really suppressed my immune system. I suppose I am one of the "lucky" ones. It caused Pancreatitis for me, and c-diff x2...I was taken off it during my last hospital stay. I am sun sensitive anyway, so I didn't notice that part. I was only on it for 7 weeks. My side effects doesn't mean that this will happen for you, just that those warnings can, and "occasionally" do happen.

I am around little ones daily as well, as I teach first graders. I just try to remain vigilant about had washing and wiping down surfaces.
 
Thanks a bunch yall. I try to go to people with experience on this cause those rx info sheets can cause a panic if you arent careful! Sounds like it shouldnt be tooo bad but i need to be a bit more vigilant maybe and watch the sun.. which isnt a huge deal as Im a fair skinned very light eyed girl and dont tend to do well in sun anyway lol
 
To be honest, I not really changed my routine in terms of hygiene protection. I just ensure I wash my hands after using washroom and don't put my fingers near my mouth if I been out in public I.e. Using handrails, etc. I was sun burnt last year as I didn't realize how sensitive my skin was.

I know it is a serious drug to be on but try not to worry about all the side affects as they may not all affect you.
 

hawkeye

Moderator
Staff member
Definitely go with a sunscreen with a high SPF.

I was on it for 23 years and did not notice an increase in colds and flu outbreaks. I'd get a flu shot as well.
 
Don,t you just love these leaflets!the drugs help BUT!along with IF the most annoying words in the English language these leaflets are a cover your backside effort,you,ll get lots of blood checks while on them and the disease is worse than the drugs it will make you ill so take then be informed and get well.
 
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