UC and Remicade Side Effects?

Hi all - long time reader, first time poster...

I've had UC for ~25 years having been diagnosed early in high school. Over that time, I feel like I've tried everything under the sun. I started with Asacol and then Colozol, neither of which worked (had Steven-Johnson Syndrome with the Colozol), and eventually found my way to 6MP, which worked very well. Note that I'm still on 6MP (75mg/daily), and the same dose I'd been on prior to my recent flare (described below).

In 2013, I had my first flare-up in 8+ years. Even though I had been on prednisone to arrest flares in the past, I had to go on a much higher dose than I'm used to (80mg). That seemed to aid somewhat, but it didn't completely stop the flare up. After discussing with my long time GI, we agreed to start Remicade in early 2014.

During the next ~10 months or so, I was dealing with several stressors including the unexpected passing of my dad, and transitioning to a new role professionally (going from a high stress position to a higher profile, more demanding role). I'm working through those issues separately, though all physicians are in the loop with each other.

It wasn't until about ~4 months or so ago, that I realized that my body felt very off. I used to be able to wake up at 5AM without a hitch - no longer; I never had anything like jock itch (gym 3-4 times per week for the last several years) - now twice in 6 months; I was rarely tired for any period of time - now I'm exhausted by 3PM; I've never been the type of person to feel cold - now there aren't enough sweaters/sweatshirts in the world; and more importantly, my libido is totally shot (was never a problem before).

I realize that in one's late 30s thing change, but I have ZERO desire to be intimate with my wife which is posing quite an issue. Prior to the disaster that was my 2013, we had started trying to have a family, so you can imagine her frustration. Part of the problem, and a very small part at that, is that she has no idea what havoc UC wreaks on someone, but I just don't have any desire to be affectionate. Elizabeth Hurley could crash through our skylight wearing a Catwoman suit while sporting the Princess Leia hair buns, and I'd probably say, "meh" and go back to whatever I was doing.

The only thing I can connect this change to is Remicade. While the libido issue started when I started to flare, I think I chalked up all of the issues I've been having to my body fighting off a flare. I was distracted professionally and healing physically, so I was willing to accept some of those other things. As things have stabilized again (finally!) I've seen no improvement on any front.

I realize that Remicade is an immuno-suppressant, so the jock itch makes sense to me. But the rest of it is driving me crazy. I feel like I'm learning about UC all over again and it's so frustrating. I can't tell you how awful and confused I feel (though I'm sure some of you have been there and know exactly what I'm talking about). I feel there's nothing I can do to get ahead of this again and have another long period of remission. I just feel defeated.

My question(s) to you are - has Remicade affected you in a similar manner? What about with respect to libido/drive? What about the other issues I'm having - have you had similar problems specific to your lifestyles that allow you to relate to my story?

I'm sorry for the long rant of a first post, but I feel so lost and don't know what to do. I'm also very scared of dropping the Remicade because it has been effective for me, but I'm more scared of having to go through another flare after experiencing one after a long run of success. I know I need to discuss this with my GI, but I want to be sound in my mind (statistics and warning labels apart) and know if other people are going through this before I have that conversation.

Thank you for your time and guidance,

TC

Try taking an antihistamine, I've been taking it to aid with my Humira headaches (thanks for the suggestion ks/Keith) and it's helped tons and I bet it'll will help you with the itching as well. I just use any generic brand (from either walmart, safeway, shoppers drug mart, etc) but you should still discuss any issues with your GI while you're on biologics cuz you never know for sure what the symptoms you might be having from it are really behind it.

Best of luck, and I hope you don't have to stop taking Remi!!

Thanks for your feedback, all.

iPoop (lol) - I've ruled out the antidepressants. Ironically, the one I'm on is actually supposed to increase libido. I've done a lot of searching and there seem to be other in the Crohn's forum that have experienced similar loss of drive. While medication affects different people differently, I am wondering if Remicade's affect on libido is more than just an isolated occurrence.

pb4 - I've thought about it but all anti-histamines knock me out. I used jock itch only as an example, but I've had my first sinus infection and ear infection that I can recall. I'm also concerned with how quickly I feel fatigued. I've generally been very active in life, and I had a tough time skiing this past season, and I'm curious how my golf game is going to react (from a stamina standpoint, I've always sucked at golf!), but I don't think I'll be able to play weekly at this point.

platinumpixie - Thank you for your post. At first I really thought my decreased interest in intimacy was related to my body and mind doing just too much. As things have started to turn around, and I've been able to get back into my "normal" rhythm of life, I really think the Remicade is playing a part in this matter. I wish you the best of luck going forward.