Newbie to CF

[pwulfing]

newbie to CF

hey everyone, as you can tell from the title, i'm new to this forum. i guess after years of having crohn's, and no one to talk to about my personal struggles, i've decided to join. i'm not one to look for sympathy, but i guess it's nice to talk amongst people who know just what it feels like to go through the pains of crohn's disease. i was diagnosed sometime in 2006. it started with severe lower back pain. i was working in restaurants at the time, so i was sure that this pain i feeling was due to lifting heavy pots of boiling water and things like that. i had to call into work bc it was so painful, and during my off time from work bc of my back, i got really sick. sever stomach pain (ulcers), diarrhea, weight loss, you know, all those fun and attractive symptoms of this wonderful disease. i was prescribed asacol which did wonders for my abdominal pain and overall well being. speeding things up a bit, to this day, i rarely take asacol, i've had zero GI issues since my first flare...now i'm left with the arthritic pain in my lower back, knee, leg, neck, wherever it feels like hanging out in my body. prednisone i'm sure has put weight on me, but truly seems to be the only thing that relieves the pain...reading the side effects of prednisone just give me nightmares, so i try not to think about that...but weight gain, cold sweats while i sleep, mood changes...those are hard to ignore. just wanted to share a quick story of where i'm coming from. looking forward to sharing stories and simply relating with people on this forum. :smile::smile:

 

[Crohn's 35]

Hi there welcome :bigwave: yes we can relate to all of your symptoms. Arthritis is connected to Crohns and boy it is nuts. Have you tried the biologics, Prednisone is a nasty drug, the longer you are on it the worse the side effects. It is a temporary bandaid but tests can deter true readings because it 'hides" it. Never mind what it does to your body and bones.

What meds have you tried? Welcome aboard, glad you joined our community and keep us updated on how you are doing!

 

[pwulfing]

i know, like i said, reading the side effects of prednisone are just haunting. i haven't tried any of the biologics. all i've ever really taken for crohn's is Asacol. to be honest though, i have not been taking that as regularly as i used to. i wonder if the Asacol would help with the arthritic pain of crohn's...but it seems to only help the GI portion of this disease. that is why i haven't been taking it.

 

[Jessi]

Hi Pwulfing! Welcome to the family.

I was on pred and Asacol until I started Remicade, which is one of the biologics. Now I am in remission and take nothing but the Remicade. It's great that I don't have to take pred anymore. I'm crossing my fingers and hoping that it lasts! Everyone is different, so it may or may not work for you to try one of the biologics, but it's worth a shot, in my opinion.

It's really great that you're feeling well at the time. I hope you can stay healthy for a long long time. :hug:

 

[pwulfing]

thanks for the kind words. it's nice to know there's support out there. yeah, i've heard about remicade. i'll certainly ask about that when i go see my rheumatologist for the first time tomorrow. i'm crossing my fingers that the remicade lasts for you. let me know how it goes as time goes on...keep thinking positively. i know at times that can be a little hard.

 

[Jessi]

Yeah, it can be hard, but we're made tougher than average people.

Humira is another biologic. There are a couple others, I think, but I don't know of them personally. Good luck finding the right drug for you.

 

[pwulfing]

yeah, humira is another one ive heard of. like i said, my appointment with my rhuematologist is tomorrow in the afternoon. i'll certainly post how it went, and maybe they will prescribe me something other than prednisone. i don't particularly like waking up in the night drenched in sweat. i will ask about those two biologic. keep YOUR fingers crossed for me now.

 

[Jessi]

I will.

By the way, Cimzia is another one I just remembered.

 

[xJillx]

Hi Pwulfing and welcome to the forum! I think you'll find the forum very helpful. I have learned so much about Crohn's by being a part of this awesome community. And it just helps speaking to others who know exactly what you are going through.

Good luck with the rhuematologist tomorrow. I hope they can offer some advice as to get the joint pain in check. As my friends suggested, you may need something stronger than asacol. Let us know how it goes!