Can really use some help.

[kasper87]

So i started remicade last monday. im 21 with osteoporsis and my right hip is absolutly killing me. Pharmacist said I have to live with it till I reverse it. understandable.. I appreciate that honest answer..

I havent slept in a week because my doctor said I am adjusting to the medicine.

I urinated ALL day today every 5-30minutes. Weird. Supposedly normal.
After all these normal things I dont get why its so hard..

Done with that rant...

My question is..
1. Has anyone else dealt with these symptoms?
2. Is it normal to have occasional Crohn's symptoms and or stomache aches even though you are on remicade.. (i have only had 1 infusion and felt better the next day)
3. I really want this to work for me, I want my first remission in 8 years and trying to stay positive..

Any advice for me?
thanks all!!

 

[danman]

Hiya Kasper,
I used to find when I went into remission through Pred or Infliximab(remicide) or Humira, I would constantly want to pee.

I always put this down to the fact I would be on the toilet 10-15 times a day and pee'd naturally at the same time. So I would get used to not having the urge to pee.
Also, when I Would go into remission, the bowel is able to absorb more water, the BM's are not as watery, therefore I needed to pee more.

This is only my own surmising, but I was always happier when I started to want to pee again, as it meant I was going into remission.

I found that when I was on Infliximab/Remicide, I was on an 8 week cycle. Bad for a week before the infusion and bad for a few days after, then 6 weeks of bliss.

Good luck with the Remy.

 

[kello82]

hello!

hmm never dealt with the extra peeing sorry!
but i was on remi, it was a good one for me, gave me some relief for a couple years. even then though, every bm i had was painful. not horrible, just cramping and uncomfortable. normal to have stomachaches while in remission though? not sure, i never called myself in complete remission.
but! i felt better but still had some moments throughout the day where i was bothered. that sums it up i suppose.

good luck and welcome here!

 

[kasper87]

that makes me a lot happier i guess..
I have been having some bloating, and cramping because my stools are actually forming.. Via pieces..

Still a bit of blood because of hemmies i think...

maybe the 2nd infusion will work even more. I havent had any swelling but i will admit that i have had a lot sodium type foods.. maybe my kidneys were getting rid of the water today.

 

[kasper87]

im Def not in remission..
i just need someone to tell me that remicade takes time and stomache aches are normal before remission..

Why? because i failed cimzia and humira.. remi is all i got left now.

 

[danman]

No you are right, I always had swelling around the tummy too.
It felt like I was full of gas, sometimes it got quite uncomfortable.

But the positives outweigh the negatives.

 

[kello82]

hmm you did cimzia and humira first?

i just find that different, most people ive heard from and remi is usually the first attempt at the biologics.

humira was a bust for me too.

oh hey theres a thread called "Remicade Club" in the general ibd discussion forum (i think its in that one....). anyways theres a bunch of people in there who are on remi right now and lots of posts and experiences with it. check it out!

 

[kello82]

oops scratch that!

its in the Treatment forum.

 

[kasper87]

I have and def. learned a lot from it.

Im just tryin to see if I can get some individual questions answered. I guess its only been a week and should be thankful I am eating double what i used to.

I guess it takes time.

 

[danman]

I think it took me a week or so the first time too.

Enjoy life again...

 

[My Butt Hurts]

If you are feeling even a teeny bit better after only a week, I would say that's a good sign. My nurses have said that RA patients can see results right away, and Crohn's patients usually take until the 3rd or 4th infusion to see full results. I failed Humira too, after 4 good months on it, and I am doing very well on Remi. About to get my 5th infusion next week!
Good luck, sounds like you just need some more time on it.

 

[Guest]

can't offer any advice on those meds, Kasper, as i've not had them, but just wanted to say hang on in there.. inflammation takes time to subside, no matter what the cause or treatment. it's great to hear your appetite has improved - that's a really good sign

 

[kromom1]

Kasper - Hmmmm, now that you mention it, I remember my hips hurting a lot while on Remicade, but only at night while in bed, laying on them was very difficult. Now that I'm off the Remicade, I am not having that problem anymore. Don't know if that was Remi-related or not. I didn't have the other problems you mentioned, though.

Good luck; I hope you get the remission you so desperately need!

 

[kasper87]

means a lot to hear that Kro

 

[Lom]

I wouldn't worry about the stomach aches Kasper. I still get them whilst on Remicade (even though I have felt the best I ever have since having Crohn's)
In terms of the urinating- have you been weening of Pred? When i started tapering I was urinating like there's no tomorrow! Probably down to the Pred causing fluid retention.