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Question about immunosuppressive medicine

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Crohn's Disease
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Posted 10/15/2015 4:05 AM (GMT 0)
I just started Entocort and do not have a lot of direct experience with medications like this. I understand this drug lowers the immune system and I need to be aware of that. What is it like getting sick when you are on an immunosuppresent? The drug phamplet makes it seem like I am supposed to be worrying every time I have a cough or sore throat, so Im confused because that seems silly. I am not sure what it would even feel like if I am not having a fever, etc. Can anyone shed some light on this? I am going to talk to my doctor more as well but of course it takes forever to get in and she doesnt have Crohns herself to explain it firsthand.
Posted 10/15/2015 5:43 AM (GMT 0)
Basically you have to be a bit more careful so you don't get sick from the same things that you normally would have been able to fight off. Things like colds, flu, sinus infections, Uti etc....
I would maybe avoid raw eggs/fish/milk ( but many GI say that all ibd whether on steroids or other immune suppressing agents should avoid those things)
Don't be too worried as anxiety actually can lower your immune system as well helping you get sick.
Also entecort is not as systemic as other steroids so it shouldn't you affect you as much.
Posted 10/15/2015 8:48 AM (GMT 0)
Just get on with life and don't think about it too much. Many of us have been on immuno drugs for decades ... The key is they lower (to varying degrees) your immune system not destroy. Just be sensible in who/what you avoid.
Posted 10/15/2015 2:48 PM (GMT 0)
They're generally pretty targeted, only blocking certain barriers (usually the one in your guts) to prevent your immune system from getting in there and wreaking havoc.

Just be more conscious about the usual things you're supposed to be doing anyway- washing your hands, don't touch your face w/o washing your hands, cough/sneeze into your elbow, etc. All that super basic public hygiene stuff.
Posted 10/15/2015 3:51 PM (GMT 0)
I have had recurrent staph infections along with swollen lymph nodes, and pick up bronchitis very easily on it.

Oddly enough the steroid part helps me breathe easier when I pickup bronchitis.

The main issue is that it takes much longer to get over things.

I really dislike antibiotics, and will just suffer through things.
I have had no choice but to use them while on entocort.

It is still much better than prednisone.
Posted 10/15/2015 6:10 PM (GMT 0)
Unless you are elderly and have multiple health conditions, don't worry about it. I was on Remicade and high doses of pred at various points, but my immune system took everything in its stride. I rarely got coughs and colds and when I did, they didn't seem to be any worse than usual.
Posted 10/15/2015 7:32 PM (GMT 0)
Thanks everyone! That doesnt sound too bad. Im prone to sinus infections anyway so that may suck but Ill just keep doing what I usually do for that. I work in a call center hence the initial anxiety.
Posted 10/15/2015 7:36 PM (GMT 0)
It depends on your line of work a bit - I was a middle school teacher, so I was a bit OCD about wiping down desks, washing my hands, etc. But basically, when you get a cold it just tends to hang on a bit longer than the average person. It can also turn into a sinus/ear infection a little easier, which can mean antibiotics, which sometimes can cause c. diff. Not super common, but a little more common for people with CD. So I take a probiotic every day (Florastor is the best), and when I do get an infection and need antibiotics, I go up to 4 Florastor each day.
Posted 10/17/2015 2:39 PM (GMT 0)
It seems like there is a lot of worry about antibiotics. I havent had antibiotics since Ive been having problems with Crohns. Is the concern from c diff and drug resistant bacteria? I visted my GP just to make sure I didnt have an ear infection; Ive been having sinus issues even before the Entocort and it was getting worse, not better, and I was starting to get a lot of ear pain and sinus pain. She automatically gave me an antibiotic even though she said the ear didnt appear infected. I kind of feel like I should wait to take it until I talk to my GI doctor....
Posted 10/17/2015 10:47 PM (GMT 0)
I would hold off a bit since she said it didn't seem infected. It could just be pressure from being congested. Have you tried using a nasal rinse? Also, I am not an essential oils fan, but DoTerra's Breathe is more amazing than Vicks Vapor Rub to help decongest.

Antibiotics are hard for the reasons you mentioned (c. diff. and resistant bacteria), but it can also cause a flare, or just upset our intestines. Even super healthy people have the very common side effect of diarrhea and upset stomach when they take antibiotics, so it affects us a bit worse than the average.
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