20+ Years Crohns Vet

[Stoner]

I'm new to blogging but an old vet with Crohns. I was diagnosed in 1993, after having my appendix removed. Back then they started you on Prednisone. Adventually added sulpha. Had an allergic reaction to sulpha 18 mths. later. Been on Asacol ever since. Have tried pretty much all the pills out there, but none as successful as Asacol. I continue to take Asacol HD to this day. I started Remicade in Feb. 2011 and continued through May 2014. I quit taking Remicade because my lips started being red, burning and chapped. I developed a rash of red, then puss like bumps along my hairline. Had a biopsy of the hairline bumps but they never came up with anything. I then developed staff infection in my nose after having nasal surgery for a deviated septom. They put me on anitbiotics for the staff. It not only cleared up the staff but the hairline rash. Lips had greatly improved but not completely back to normal. I started Humira in Aug. 2014. It's not helping the Crohns pain yet and low and behold I'm in a full blown mess with my lips again. The lip problem is what brought me to this forum. I've been dealing with it for over a year now and seems to be much worse being on Remicade and Humira. Has anybody else experienced my lip experience as a side effect?

 

[DJW]

Hi and welcome.

 

[lilac]

Hi Stoner, my lips often dry out with Prednisolone. I'm on Humira so hard to say if that's contributing to it just now, only advice I can offer is ice when you get the burning lips - I've made some "interesting" popsicles. Usually just water and crushed vit E pills. The ice lollies look better than constantly running ice cubes over you mouth (and help avoid eating bad stuff when watching tv :ycool. I make them a bit more interesting by putting edible flowers, the odd gummy sweet or something so that I'm not just sucking a massive ice cube.

And I just use the usual vaseline for the chapping and make sure I gently brush the lips with a baby toothbrush.

welcome to the forum

 

[Stoner]

I've wondered about vitamin E myself. I've thought about popping a hole in a vitamin E capsule and rubbing it on my lips. I've also found people talking about B vitamin suppliments.