Remicade side effects and choices

[sunflower]

My Crohn's is flaring pretty bad and I need to be on something more again. Several years ago, I tried Remicade. It was a miracle! Only a couple of infusions and I was feeling like a human again for the first time in YEARS!

Then the sinus infections began. They became so frequent that I could not be off of antibiotics, so regretfully I stopped taking Remicade and eventually my sinus symptoms got better. I stayed in remission for several years, though and I have never forgot how good I felt while taking it.

Now I am strongly considering doing it again, but I would like some input. Since then, they have discovered that I am allergic to a certain mold and that allergy causes me to have a fungal infection. Weird, I know. But I guess they found out about it and Mayo has been letting the ENT's know. I had to go thru months of hell to find out, but at least now I know how to deal with it.

So, here is the delimma. I know that Remicade made my sinus worse. It is one of the possible complications. Another potential complication is a systemic fungal infection. Now, since my sinus problems are cause by a fungal infection - would it be risky to try the Remicade again? I would SO love to be well again! But I don't want to kill myself getting there, either. LOL!!

For the big guns, I have only tried Remicade and 6MP3, which was destroying my gums so I went off of it. I have not tried Humira, Methotrexate, Imuran or anything else. I am leary of Imuran and I don't know why. It has always just bothered me, so I don't want to take it. Didn't really want 6MP3 either, but I did try it.

I go in Wednesday to discuss my options with my doctor. It will be interesting to see what he has in mind, but I would like to have some ideas of my own, too. Sort of mentally prepare myself, I guess. I do feel like I need a stronger medicine, though. I have never had strictures start before. It is uncomfortable, and I am already backing up even though I have been eating almost nothing.

Thanks for any advice - and good and bad experiences. I have been reading, too.

 

[SdN]

I'm not sure I can offer any advice but I do know that they say Remicade can be especially risky for people who either live in areas where fungal infections are common or who are themselves prone to fungal or respiratory infections. As far as that goes it's really just a roll of the dice as far as I'm aware. If you did take Remicade you would need to be extra vigilant with any preventative measures you have at your disposal to prevent the sinus infections.

 

[sunflower]

I guess I just needed to think out loud. The side effects do not outweigh the benefits, and though this is my worst flare, according to doc, it is mild compared to most. I am just upset, in pain and scared. He is not. LOL!! doesn't want to do anything drastic right now. He thinks we can control it pretty easily.

Just one weird thing. I listed my Pentasa (new doc, new chart) as I am taking 4 pills at 250 mg 4 times a day. So, he prescribed the "new" 500 mg Pentasa and told me he was going to up my dose. I didn't think he was really hearing me. He kept talking about me being on only 1000mg, and I kept saying yes, four times a day. He said he was going to up my dose by 1000mg. The new dose is 2 pills at 500 mg twice a day, which is only 2000mg. I guess he really didn't hear me. Sigh. I hate it when this happens. Now I have to call and try to explain to the nurse that I was already on a higher dose than that. Grrrr. She doesn't listen too well either.

He doesn't want to do Methotrexate, either. Whew!