Remicade and Anxiety

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Regular Member

Date Joined Jun 2011
Total Posts : 205
   Posted 11/20/2011 9:38 PM (GMT -6)   
I had my first infusion Friday, everything went fine, no reaction, came home and felt pretty tired but I pre med with 500mg tylenol and 180mg Allegra per my GI. Prior to starting the medicine I did all the reading I could and of course when you read things like increased risk of infections (which happened to me almost immediatly after starting Imuran, though I think that was an allergic reaction) it tends to scare you. In my case it really scares me. If I could avoid it I would, but my symptoms don't seem to like it when I go under 20mg of Pred.
I've been a Crohnie for only 6 months and so far the mental toll has been far greater than the physical one. It doesn't help me that I'm on such a potent med, I realize it can really help but the side effects keep getting in my head... I really admire those of you who have dealt with this for years. I have my good days but my bad days are a mess, and it's not the CD... I rarely have pain, my BM's are mostly normal... I just get so upset and afraid of things getting worse, or getting sick, etc. it tends to take control and the anxiety leads to things like chest pain or weakness which fuels the cycle.
Anyone else feel similar when they started Remicade? I feel like I'm just waiting for something to go wrong, and that's the worst thing I could do... but I can't seem to remind myself that I'm actually doing rather well. shakehead

32 - DX 06/11
Meds - Prednisone 30mg, Pentasa 2000mg, Xanax
Pancreatitis from Imuran.
Currently doing well

Regular Member

Date Joined Jun 2011
Total Posts : 82
   Posted 11/20/2011 9:58 PM (GMT -6)   
Oh GOD ! I understand you !
It's been around 8-9 months since I got my DX and, well, I had being through a lot of mental state too.. I had a small depression, anxiety, rage (come with the other one).
I still have some but I managed it way better, but still. I didn't even fully accepted it, sometime I'm still doing the ''I can't really have that''.
I understand your concern about the meds, since I too have been doing good since the DX. And it's why it is probaly harder to accept the med, since it doesn't come with a relief feel.
And the fear of getting really bad one day is probaly what did the worst to me. For this I'd say : Well, yeah, it MIGHT get really bad one day. But since now you're doing not that bad, don't let that anxiety make you having a bad moments, so if it get bad one day, you'll have lived better before.
I'll have a second scope in a couple of month to know if the Pentasa was enough with the mild inflammation I had and if I have to go with an other med and I fear those too because I fear them to make me feel seeker than the crohn's actualy make me feel. (No D, 1-2 BM a day, can eat almost everything, I just have baby cramps than almost don't bother me)
You're not alone !!

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 11/21/2011 9:53 AM (GMT -6)   
You are not alone! I have had Crohns for over 36 yrs and I suffer with anxiety myself. I take a low dose of Xanax when needed and it really helps.

As for the meds, no I do not fear them. I fear what life would be like without them as I have had some bad experiences happen to me becuz I didn't want to take the meds. So now I am a good girl and take my medications. The other side of the picture is too ugly to even think about. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 36 years. Currently on Asacol, Prilosec, Estrace, Atenolol, Percoset prn, Zofran, Phenergan, Probiotics, Calcium, Vit D, Folic Acid, Magnesium & Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis. Currently my Crohns is in remission, but my joints are going crazy

Veteran Member

Date Joined Nov 2010
Total Posts : 567
   Posted 11/21/2011 9:46 PM (GMT -6)   
I can completely relate!! I started cimzia last week, and had a little anxiety attack later in the day when I was feeling lightheaded and nausea. I have a couple of friends that I joke with about the side effects, and it helps me to try and make light of it. It's not to say every twinge doesn't send me worrying, but sometimes my brain works on overdrive. I try to just stay in the moment as much as I can, and focus on what I can do to feel better and not what might happen. Oh, and when I'm on prednisone, I'm moody and irritable and I worry and obsess way more than I would normally!

I will tell you that I work with kids in a public library, and I've been on several different immunosuppressants, and I haven't noticed any increase in infection. *knock on wood!*

Xanax has been a life saver, and sometimes it helps just knowing I have it and I don't have to take it! I've also found guided meditation/hypnosis CDs to be very helpful. I use one a few times a week to get to sleep, and I've been trying to listen to an IBD one everyday. Talking helps too!! I really kept things to myself too long--influenced by ex and my family. This forum has helped, and I've opened up to more people and feel like I have more of a support system that I ever had.

Hang in there!

Diagnosed w/Crohn's in 2005. Currently on 40mg Pred, Pentasa (2pill, 2xday), synthroid, allergy meds, B-12 (liquid), multi-vitamin, probiotics, and xanax, ambien and vicodin prn. No surgeries. Have tried: sulfasalazine (developed a mild rash), Asacol, entocort, imuran (rash, nausea), humira (joint pain/fatigue), remicade (serious joint pain/fatigue stopped after 2 doses), 6MP (not effective)
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