How does everyone else do this?

[No crohns]

In October 2012 I pooped myself at the grocery store. I had been feeling some discomfort and constipation prior to that, so I went to my doctor who sent me for a colonoscopy. The colonoscopy showed patchy lesions on the ascending colon with friable lower colon. It was diagnosed as Crohn's, though it has some features of ulcerative colitis. I got progressively worse in December, and was admitted to the hospital in January. My C-reactive protein was 189.5 on admission and I was running a temp of 103. I was started on Remicade while I was in the hospital and tomorrow is my 3rd infusion. I didn't feel any different, after the infusions, but I am hoping that was because I had so much inflammation. Has anyone had similar experience? Did the subsequent remicade infusions help? I am so worried that nothing is going to work.... I am currently taking predisone 20 mg (tapering), Apriso 1.25 mg, azathioprine 150 mg, Rowasa enemas, and hydrocortisone enemas.

 

[Angrybird]

Hello and welcome to the forum

Have you noticed any improvement at all since starting these meds - for example when you were on the higher pred dose? How long have you been on them and what type of diet are you following at the moment? What symptoms are you still getting specifically and how often are you seeing your GI for check ups?

AB
xx

 

[AckMac]

You're in the right place. This forum is amazing.

You may want to check out the Remicade Forum (it's under Treatment) as others on Remicade hangout there and can share how long it took for them to respond to Remicade.

You are among friends now. Friends who understand.

 

[Jim (POPS)]

keep your head high, you will get better soon.

 

[No crohns]

I have improved, but I am on so many drugs that I am not sure what is working. I think it may be the prednisone, now that I am tapering I don't have that extra energy boost. I had my infusion today, but am starting to feel a little crampy. Hopefully just tiredness after a long day... Thank you all for your kind words, I know that you all "get it."

 

[Angrybird]

It may be worth also asking your doc to check your vitamin levels as a deficiency in this area could contribute to your fatigue. When will you next be seeing your doc to discuss how things are going?

 

[Jennifer]

Hi No crohns and welcome to the forum!

For some people Remicade can take many months to start working and it also possible that the dose/time frame may need to be adjusted. I'm still in the middle of my loading doses and will be having my third infusion next week. Thus far I haven't noticed it doing anything for my joint pain yet where with Humira my joint pain went away within 2 weeks of starting the first loading dose. Keep your GI posted if any symptoms get worse or don't seem to be improving. Here's the link to the Remicade subforum if you'd like to check it out: http://www.crohnsforum.com/forumdisplay.php?f=58

Since you're tapering off of Prednisone you may notice symptoms returning around 15-10mg. Its very common so what will happen is your GI will put you back on the previous dose and then slow the taper down. Keep in mind that 5mg tabs can be cut in half and that it also comes in 1mg tablets if needed.

Keep us posted on how you're doing.