can't get things under control, questions

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Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 3/9/2010 12:25 PM (GMT -7)   
I'm on Remicade and Methotrexate, but I'm flaring pretty badly. I was in the hospital last week, because my fevers were out of control, 103.2, and I was dehydrated and almost delirious. My CRP was 150.

The doctor did a test to see if I have developed antibodies to Remicade, but it takes a week for the results. They doubled my dose of Remicade while I was in the hospital, which temporarily brought my temperature down, but now not even a week later, I'm starting to get fevers again.

My GI is out of town, so I'll hopefully get in to see another GI, since they told me to call if my fever got over 100, which they are 101.3 right now. I'm assuming they'll try Prednisone, even though before it didn't really do much for me. But in your experience, if you get fevers with your Crohn's, does Prednisone bring them down?

Also, my GI mentioned dosing with more Remicade (if I haven't developed antibodies yet), so not a regular schedule but more of a loading type schedule. Has anyone done that before, and if so, has it been successful.

One last thing, my GI planted the seed in my head of possible surgery. That scares me to death, especially considering I haven't even had this disease for a year and already they can't get things under control with the hard core meds. I'm confused about surgery. It doesn't really guarantee remission, does it? (I guess nothing does). And, I've heard that once you have surgery, it usually leads to more surgery.

I'm really freaking out. Does anyone have any words of encouragement?

coolgirl09
Regular Member


Date Joined Sep 2009
Total Posts : 21
   Posted 3/9/2010 2:30 PM (GMT -7)   
Hi Octobergirl,

My story is really similar to yours. I was diagnosed in August of this year and prednisone did very little for me. I was hospitalized in September b/c my ins. refused to approve the Remicade w/o a waiting period, and I couldn't wait any more (10-15BMs/day, blood loss, 15 pounds lost in a month, etc.). Within a week I was in clinical remission and feeling great.

Right now I'm 14 weeks pregnant, and I've started to see blood and mucus in my stool. That's my only symptom at the moment, but it has me freaked out. My SED rate is up from 8 to 19 (not super high), which the doctor says may just be from the pregnancy. Right now they want to avoid steroids until later in the second trimester.

All that to say, I wasn't planning on moving through biologics so quickly, and I'm feeling pretty disappointed. Maybe all I need is my dosage upped, I dunno. When I was on steroids before, I was really only on 40mg of pred. at one time. I'm wondering if more would do more for me (or you, if you needed it). Did you get IV steroids at the hospital?

Also, did your doc. suggest you move to another biologic? I'm wondering what surgery would mean for people like us (i.e. most of my colon and a bit of my terminal illeum is affected). Would they just take the whole thing out?

If I were you and my doctor was suggesting surgery, I would definitely seek out another opinion. I'm waiting to see what others tell you (and me) about all this because I feel scared, too. You're not alone. I wanted more time to get used to having this disease before it needed new treatment. Grrr...I go from being okay to being angry to being scared and back to okay. Right now I just feel like I need hope.

And now I'm worried I hijacked your post, which I definitely didn't want to do with my own blabbering. I guess all I can say is that you're not alone, and there are other people out there with your exact questions (sorry I don't have more answers) :-(. I really hope you can get everything under control really soon! (and let me know how you did it...maybe it will work for me, too!)
Dx'ed with CD in 8/2009
currently on:
prenatal vitamin for the baby I'd love to have
Zoloft for my craziness
Remicade for CD
Imuran so the Remicade keeps working!


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 3/9/2010 3:18 PM (GMT -7)   
Hi Coolgirl,

First of all, congrats on your pregnancy! I would love to be able to have a baby in the near future, but this disease has stopped my periods, so I really need it to get under control before I can even think about having a baby. I'm so sorry though that you are dealing with a flare during pregnancy. I can't imagine how stressful that could be.

I didn't get IV steroids at the hospital, because the fevers went away. They were planning on giving me IV steroids if they didn't, but since the fevers stopped when I was in the hospital, they didn't. I'm seeing my GI's Physician's Assistant tomorrow. They want to put me on Prednisone at 40 mg which is what I was on before that didn't seem to do much. I'm hoping maybe this time they'll work, but I don't know. Maybe 40 mg isn't enough to see improvement, I don't know. I guess I'll see.

My GI did say if the Remicade didn't work that he would try Humira. He mentioned before though that I would have to wait 4 weeks before starting Humira after getting my Remicade dose before switching. I really hope that if that's the choice we go to that the Humira works. But I know what you mean, I didn't think I'd be running through the biologics so quickly.

I know, if surgery is suggested again, I'll definitely get a second opinion. I know nobody wants surgery, but I am having a hard time dealing with the possibility of surgery already while on the big guns. I want to exhaust all other resources first.

Don't worry about hijacking. It's at least nice to know that other people understand what I'm going through, though I'm sorry you have to go through it too. I know the feeling of going from anger, fear, hopelessness. Ugh. I'm hoping to get things under control for both of us. I'm trying the SCD and I was hoping that would really help me out, but so far it hasn't been enough to take the fevers down.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 3/9/2010 4:05 PM (GMT -7)   
Have they done scans etc to check for possible infections, abscesses etc, Octobergirl?

What sort of surgery is your doctor talking about? Is it resection, or an ostomy?

You said that you wanted to exhaust all your options before you tried surgery. We do have some people here who have long remissions after surgery, and we have others who have started to flare again quite soon after their operations. I'm wondering if perhaps it would be a good idea to keep one or two meds / treatments in your arsenal, just in case you have problems after your surgery and need something to help your disease get back under control?

I understand your fear of surgery - I have felt that way myself - but it is possible that an operation is just what your body needs. My gastro doc has told me that sometimes people really do need to have the worst-affected section of their bowel removed, and then the rest of their body & gut heals too.

All the best,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 3/10/2010 7:42 AM (GMT -7)   
Hi Ivy,

They did a CT scan and lots of blood test to check for infections. They said my case is a bit strange, because my fevers get so high- 103.2, and usually that's not the biggest complaint with Crohn's. I wonder if there is some other inflammatory response that is causing the fevers, because the D isn't that bad, but I don't know what it could be.

I'm really not ready for surgery. He said a resection, but to me that means I'm that much closer to an ostomy, and I honestly don't think I could emotionally handle that. Plus since it doesn't guarantee remission, I'm not that thrilled about the possibility.

What type of surgery did you have? Did you find it helpful? How bad did it get before you had it?

Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 3/10/2010 7:43 AM (GMT -7)   
Hi Ivy,

They did a CT scan and lots of blood test to check for infections. They said my case is a bit strange, because my fevers get so high- 103.2, and usually that's not the biggest complaint with Crohn's. I wonder if there is some other inflammatory response that is causing the fevers, because the D isn't that bad, but I don't know what it could be.

I'm really not ready for surgery. He said a resection, but to me that means I'm that much closer to an ostomy, and I honestly don't think I could emotionally handle that. Plus since it doesn't guarantee remission, I'm not that thrilled about the possibility.

What type of surgery did you have? Did you find it helpful? How bad did it get before you had it?

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/10/2010 10:49 AM (GMT -7)   
Hi Octobergirl - I'm not sure I really have any advice but I wanted to wish you well... Sounds like you're going through a really hard time. You're not alone in fear of surgery, but if it's a resection maybe Ivy is right. Your temps are so high.

Like I said in another post, my temps tend to be around 100. When I'm really bad, more like 101. A couple times at 102.5. No matter where they are, oral or IV steroids seem to kick them right away. As well as the hydration you get while you're in the hospital on IV steroids.

I hope you're feeling a bit better at least soon!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 3/10/2010 1:28 PM (GMT -7)   
Thanks, sr5599. I just started Prednisone today so hopefully that keeps the fever at bay. I'm so not ready to have surgery (not that anyone probably is), but especially not this soon in my diagnosis. I'm keeping my fingers crossed that the Pred helps keep the inflammation down.

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 3/10/2010 3:11 PM (GMT -7)   
I'll send good thoughts your way! IV and oral steroids have pulled me out of deep holes and away from knives. Hopefully they'll get you under control soon!
1 fistula, crohn's colitis, limited to large intestine
Compounded budesonide 3mg/daily, Cimzia, MTX . Dx Osteoporosis 10/08 started Forteo 1/27/09


Octobergirl
Regular Member


Date Joined Aug 2009
Total Posts : 377
   Posted 3/10/2010 3:20 PM (GMT -7)   
Thanks, sr5599! I really appreciate it! :)
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