Pred didn't work!

[scifi-enthusiast]

So, after being on & off the pred for 2½ years (around 22-24 months of actually taking it), I am once again having a flare up after tapering to 15mg 3 weeks ago and tapering to 10mg a week ago. I'm experiencing fatigue (past 6 days), arthritis (over a month), the big D every couple of days (the Lortab keeps my bowels solid most of the time since it causes constipation), sometimes bloating, bleeding hemorrhoids, and colonic pain.

I saw the GI and he said that I may have to get on something stronger. He scheduled a colonoscopy for me on Oct. 8 to see the extent of the damage.

Now my question is, what's the next step up from a combo of Lialda (Mesalamine), Pred, & Imuran. Is it Humira, Cimzia, Remicade, or another pill combination I haven't tried?

 

[Lucy]

Sorry to hear your meds not working. I hope you can find the one that works for you.

 

[Jennifer]

I really don't know what drugs he may try next, it really just depends on the extent of the damage and you'll find out everything after the scope. When Pred didn't work for me and I was on it for so long with everything being damaged over and over, no amount of medication was going to fix it so I had to have surgery. Its possible that you may have to do the same. Not trying to scare you but its something to keep in mind. Let us know how the scope goes and what the doc says.

 

[ThanksP]

When Pred no longer worked for me, my doctor put me on Cimzia. But every illness is different and it seems so are the doctors. Best of luck to you. I hope you are able to find something that works for you so you can get relief...quickly.

 

[scifi-enthusiast]

Hopefully I won't have to go through surgery. Now, what I'm worried about is Humira, especially since I'm prone to getting ear infections every couple of months. I haven't looked into the side effects of Cimzia yet, and the only problem I have with Remicade is that my doctor says that once you get on (and it does well) you can never get off.

 

[ThanksP]

Looks like to me the side effects of Humira and Cimzia are pretty much the same (Remicade too). Difference is Cimzia is once a month, and not as painful, whereas Humira is every two weeks and more loading doses.

 

[Momof2EW]

Sorry Im not much help but hope that you get to feeling better soon!

 

[Entchen]

Hi Scifi: So sorry the Pred wasn't effective; hoping that your procedure goes well and that you find a new treatment regime that works!

 

[saidinstouch]

It isn't surprising that you flared during the taper from pred. Most people get a rebound or rubberband effect where the symptoms return near the end of the taper since the effects only last while the drug is in your system. Your next step would be on of the biologics. They shouldn't really suppress your system any worse than the pred has been, so humira, cimzia, or remicade are all options for you. The statement your doctor made about remicade is true in that if you stop you cannot go back. This used to mean it was a lifetime commitment. However, now that Humira and Cimzia are approved to treat crohns, have nearly equal efficacy to remicade, and work in almost the same way as remicade, you don't have to fear stopping the remicade. Five years ago you had no other drug you could go onto after remicade. That isn't the case anymore, so if you are okay going to remicade over humira, then that is probably a good path to choose. Ultimately, the ear infections are probably the result of being on the pred, but should not be worsened either once you are on one of the anti-TNF agents.

Hope that helps you make a decision about what to do next. Don't worry about the remicade forever problem anymore, because it isn't really a big deal anymore.

 

[scifi-enthusiast]

Ultimately, the ear infections are probably the result of being on the pred, but should not be worsened either once you are on one of the anti-TNF agents.

I've been getting ear infections every couple of months since childhood. The pred actually helped the frequency I would get them (since it helps allergies), meaning I would only one every 8 months to a year, instead of every 2 or 3 months.