I keep flip flopping.

[Lydia]

So I am on meds for the first time in about 4 years. I have been on pred and immuran for a week now. I know the pred is what is making me feel better and now that I feel better I dont want to start my remicade next week. I am afraid to try remicade. I am allergic to so many drugs and I here that people tend to have allergic reactions to remicade. I am allergic to penicillin, sulfa, flagyl and codeine. I am really paranoid about having bad reaction and dying. Also he has me on immuran along with the remicade which makes me afraid I will get cancer. I think his theory is that the immuran will prevent me from becoming allergic down the line. I know the pred is masking how bad I am. I had a scope the other week and I was really bad off. But still I am feeling really good right now and I am wondering if I really need the remicade.

Also, I think he wants me on remicade for a long time, but I would much rather be on it for a year or so to heal the damage and try to keep a drug free remission like I did last time. Am I being naive? I hate the long term implications of all these drugs and I have a long life ahead of me, hopefully.

 

[kenny]

My GI disease management guy explained to me last week that the chance of cancer related to Imuran is an increase of 0.6% for every 24,000 (or was it 240,000) Patient YEARS! I share your feelings of concern but I look at just how small a risk is associated and it helps keep that feeling of concern from spreading into a feeling of dread.

I can't offer any help for Remicade but when you look at the remicade club here it sure looks like there are a lot of happy people around using that treatment. I hope you have good luck with it

 

[Crohn's 35]

Hi Lydia, first the Prednisone will cause symptoms to appear as you taper... it just goes that way. As for the Remicade, I hear you on the allergic reactions, I am allergic to sulpha and almost all drugs so far are not tolerated. The is MY OWN opinion reguarding Remicade. If you are like me and I had a choice, I would try the Humira first, it is made with human protein not mouse. I ended up in ER on my 3rd infusion. It scared that bejeezes out of me. I reacted to Imuran, and most others so I am like you I am very cautious. There is Cimzia too, but it is not here in Canada.

So many have done so well on Remicade, and Humira was milder and did work for a spell. Another thing to keep in mind, studies from reactions and allergic reactions are a must even if they are on a placebo. Also all of us are different in our disease severity and drugs. I am NOT trying to discourage you either way, it was my experience only. I understand your problem though. Either way you still have to have an xray prior to Humira. The good thing of Humira, it is done at your convienence. Good luck!

 

[Lydia]

My husband really wants me to do the remicade. I think he really wants our life back. I do too, of course. I got the cost covered from blue cross and his insurance so I may as well give it a shot. Plus my bum was really bleeding/draining this morning which reminded me why I should do this. Fistulas are not fun and if I can heal it up with the remicade then its worth it. Besides they have all kinds of stuff to bring me back to life if something goes wrong, right?

 

[Astra]

Hi Lydia

I am so glad you put this post on, because it echos all my reservations about Remi too, I don't know what to do.
I have researched Remi lots, and I believe it works wonders with bleeders, but I don't bleed, i believe that I don't need Remi, but this might be because of the Pred (20mg) masking my symptoms. I know I need a long term maintentance drug, I don't want to stay on Pred forever. I have researched Humira and Cimzia too, and altho all 3 are TNF-alpha blockers, they both seem less invasive and self administered, compared to Remicade.
The other thing I can't decide on, is which immuno supressant to have too, if I do have to have one, don't want to stay on Pred for another 4 months with a biologic.
I'm allergic to Aza(Imuran) and Budesonide (Entocort) did nothing.
Decisions, decisions?
My head is cabbaged over all this, so I know how you feel

Joan xxx

 

[Lydia]

Hi Lydia

I am so glad you put this post on, because it echos all my reservations about Remi too, I don't know what to do.
I have researched Remi lots, and I believe it works wonders with bleeders, but I don't bleed, i believe that I don't need Remi, but this might be because of the Pred (20mg) masking my symptoms. I know I need a long term maintentance drug, I don't want to stay on Pred forever. I have researched Humira and Cimzia too, and altho all 3 are TNF-alpha blockers, they both seem less invasive and self administered, compared to Remicade.
The other thing I can't decide on, is which immuno supressant to have too, if I do have to have one, don't want to stay on Pred for another 4 months with a biologic.
I'm allergic to Aza(Imuran) and Budesonide (Entocort) did nothing.
Decisions, decisions?
My head is cabbaged over all this, so I know how you feel

Joan xxx

I am gonna do it, even though I am terrified. I just keep picturing having this terrible reaction to it, but from what I have read here, even if you do have a bad reaction they can usually bring you back. My mama called today and told me she is going to come in from the city to hold my hand. Yep I want my mama. lol. I mean what if it works? Then I will have been glad to have done it. And if it doesnt work or it doesnt agree with me then I will just keep taking the immuran and the pred for awhile longer until I figure something else out. I figure I will try the first infusion and decide what to do from there. Baby steps, right?

This is also so consuming, I went from feeling good for years to being on 2, soon to be 3 drugs. I dont even like taking tylenol if I dont have to. My head is cabbaged too. I keep feeling happy, then sad, then hopeful, then ready to write a letter to my kid incase I die, then sobbing, then hopeful again. This really really sucks.

 

[Astra]

Hi Lydia

Glad you've made a decision, I'm still pondering!
Good luck! Don't worry about immediate reaction, I'm sure the docs will know what to do, they do this all the time, right? And, nothing like having your mum there to hold your hand, we all need our mummies!

Let me know!
Lotsa love to you
xxx

 

[ameslouise]

Awww, Lydia, you sound so distraught. I know how you feel. I flip-flopped for months and was really miserable until I finally made a decision and stuck with it.

I tried Remicade about a year ago... and my Mom and Dad came down and held my hand during my first infusion! It didn't work for me - because I had taken a few infusions many years ago, we knew there was a chance for a bad reaction but I gave it a shot anyway.

There's lot of info about it really helping with fistulas so I really hope this is the case with you.

Good luck. Stay strong. -Amy

 

[Lydia]

I am having a bad day. I am having a weird side effect. Its like without pain my guts have forgotten how to move. I feel very bloated and light headed and weird. I felt this way yesterday too. I had a BM this morning and it wasnt very much and there was a lot of bloody mucus after that I think came from a fistula. It doesnt help that I am afraid to push really hard since I had the scope. I think I am going to go pick up some colace tomorrow. Its nice not having crohns related pain but I really hate the side effects. I probably should not have ate so much, but the pred made me hungry and sad.

I suck at this. I am hiding in my room from my family because I suck.

 

[Crohn's 35]

Sorry Lydia, we all have those days sooner or later... I have had alot in the last year. It is so hard to find the right drug, or supplement for our individual disease of Crohn's. Hiding will not make it go away but I think everyone should tell a family member something so they know how to deal with your situation and take you to the hospital if need be. I am on 25mg of Pred too and my symptoms are baaaaaaaaaaack. Hang in there ok>

 

[Astra]

Yeah Lydia hang on in there
The Pred really screws with your psyche, so tell someone how you feel just to be on the safe side
thinking of you
xxx

 

[Lydia]

I finally was able to go to the bathroom this moring and I feel so much better. Last night I was starting to think I had an obstruction. My poop almost looked like a normal poop so I think the inflammation has really gone down. I cant believe how happy I am over a normal looking poop. Its been over half a year since I have seen one. lol.

My husband was checking up on me yesterday and he took care of Lilly (my 2 year old) so that was nice. My poor kid. She must wonder why mommy randomly cries through out the day. She has been giving me extra hugs. I am sorry this disease has been making her have to grow up a little faster than normal. I just hope it builds character instead of hurting her. I think she is an old soul, which helps.

 

[ameslouise]

Hi Lydia - Sorry to hear you are so down. The pred can really mess up your head! I started seeing a shrink for the first time in my life after my Crohn's diagnosis. I just couldn't deal on my own. I am now on an anti-anxiety AND an anti-depressant and it really helps. I hate to take pharmaceuticals, but I just felt like I couldn't do it on my own.

I know it's tough having a little one at home. You want to be strong and keep it all together, but it's near impossible sometimes.

My son was 15 months when I got sick and spent a month in the hosp. Then several surgeries over the course of a year.... He is now almost 9 and still ges a little sad sometimes that I am not totally well, but he deals with it all fine. And the biggest thing he had learned - no fear of pooping in public toilets!