why am I so apprehensive about Remicade????

Just think this could be the medication you need to get feeling better! Take a deep breath and all will be okay.

Hugs
Gail*Nanners*

I know what you're feeling.  I've been flaring since mid-September.  I've been to my doctor twice and each time he talks about adding Remicade or Humira.  I KNOW it's something that's looming on the horizon ... but I'm kicking and screaming about it.  For me, it's adding ONE MORE med to my regime of pills.  I've read the litature on Remicade, Humira, and Cimzia ... I don't want to take ANY of them ... but like Nanners writes, "it could be the medication you need to get feeling better!". 

Hang in there ...

kia

 

My husband's been on Remicade now for about 20 months, and he's doing great. Remicade pushed my husband into remission when nothing else did (not even 120 mgs of solumedrol). It has given us our lives back! Yes, it's scary, but most meds are. And really, because they know so much about it, they take good precautions with it - you have nurses watching over you, and they know what to do if you have an allergic reaction. It's ok to be scared about it, but also keep in mind that it could be just the thing to make you feel so much better! So, when you get anxious or start to panic, remember that flip side.

I hope it gives you good relief!

((Hugs))
PV

Frankly, I think it is perfectly natural and even sensible to be worried about starting Remicade. There "can" be some nasty side effects. Doesn't mean there will be, just that the potential is there. But when you consider your current quality of life and your options w/your Crohn's not responding well to your current meds ..... the "possible" risks of Remicade take on a slightly different flavor. As w/any med, you have to weigh the risks and benefits and then decide for yourself which way to go is worth it to you. Good luck and God bless! It can be a scarey decision but when you see and read of the blessings and benefits of 'cade for so many ...... it does look a bit more attractive.

I can totally understand fears about Remicade. When I was first diagnosed I wanted to stay only on the 5-ASA meds, which worked reasonably well for around 18 months. AFter several months of flaring I was willing to try 6MP. After 4 months I got pretty bad and went with Remicade. I have completed the induction phase and I can say that this is the first time in 2 years that I have been just about asymptomatic. After seeing blood everyday for over two years I haven't seen blood in weeks. I have had no reactions to the Remicade. I honestly have my life back and do not regret anything except my own reluctance to take the drugs sooner.

Because Remicade IS a drug that requires and begs for a good question and answer session w/your gastro and a thorough discussion of the risks and benefits so that YOU are the one to make the final decision whether to try it or not. Its not a decision your doctor can make for you. Its a decision only YOU can make after you've been fully informed and had a chance to think things thru. Your doctor is absolutely correct in insisting that you and he have a meeting of the minds on this.

Crohnie...we did have a meeting of the minds a year ago and decided imuran first, then remicade if it didn't work. In addition we talked about it when I went into the hospital, as a matter of fact I thought he ordered it then. I feel like such a wimp,lol

I thought when I was at the hospital when my stomach  looks preg and the pain was laborlike that we agreed to order the Remicade. I mean he even had them do the TB test while I was there.   I am apprehensive about going because I have to go in and sit for about an hour, then go into the office for another half hour before I see him.  I have to get up to go to the bathroom and it hurts to sit that long.....like I said I am a wimp!  The last time I went I told the nurse she was going to have to let me come back to lay back or I would need to head home.  She let me come back and sit in one of the rooms until it was my turn, but she was NOT happy about it, which makes me even more upset about going.  I really wish I had stayed in the hospital instead of coming home, however I have two kids and one that would not handle me being in the hospital well (he is autistic). He did up my immuran to 100 mg a day while I was at the hospital.  I have been on 9 mg of endocort since the hospital visit the week before Thanksgiving.  I was on 6 mg before that and have been for the last two years (with a mo break here and there).  Also, I wonder if the immuran hasn't had time to fully kick in yet.  My GI acts like it isn't all that serious, saying that he and the radiology dr disagreed on how much thickening I have.  He didn't think it was as bad as the other dr did--I just thought that was because he is a GI dr and he sees it more. Thank you for listening--this board has been a God send to me.

HM, I am very impressed that you are willing to admit your fear and that is the first step in overcoming it. When I was first diagnosed with Crohn's disease back in 2004 I was very apprehensive to starting any medications also. I was actually in the process of being diagnosed when I required hospitalization for a GI bleed and was in severe pain. My doctors (GI and primary care) had been trying to diagnose my disease and were having a hard time because I was not your typical case. It was during this hospitalization that I was first put on the newly approved medication Remicade. I was sick the first night in the hospital due to all of the other medications in my body but the next day I saw a huge improvement and felt so much better. It was not 100% and it took a few infusions to get the full effect but I started living a somewhat normal life. I began to actually look forward to my remicade infusions every month because I could relax, talk to the nurses, and I knew that I was fighting my disease to the best of my ability. I was on Remicade for 4 years before I began to develop antibodies toward it and have tried Humira, methotrexate, 6 mp, and Cimzia since. I was on Cimzia for almost a whole year and did not receive even close to the relief that I did with Remicade and my arthritis was excruciating to say the least. Due to fact that I there were not any other big gun medications left and the prednisone had wreaked havoc on my teeth and bones, my GI decided that he would let me try Remicade again. I just had an infusion yesterday and after 4 infusions I am finally starting to see some improvements. I am now premedicated with cortisteroids and bendryl and sleep through the majority of the infusion. It is really nice to have a couple warm blankets, a coke ( I know bad but my guilty pleasure), and to chat with the nurses when I wake up. They have all become really good friends and I enjoy being able to interact with people outside of my family, close friends, and church. It also very humbling to be in the IV lab with all of the incredible people that are receiving their chemotherapy and fighting cancer. These individuals make me grateful for all I have and for my own situation of knowing that even though I am sick and miserable many days, I am still going to live and not in fear of dying soon. They have taught me to enjoy life and they motivate me to keep fighting. It is amazing how contagious their happines and optimism can be. I also noticed that you have a child with autism. I have a autistic nephew and know of the many challenges that mothers go through each day to help their child have a normal childhood. If you can do these things then you can handle the infusion.

I knew that I was not the only one that does that. It is a $10,000 conversation and I am going to get some rest and a free coke for it. Oh and the remicade too.

I was at the appointment with my GI to talk ostomies when he offered me remicade (was brand spanking new in the UK at the time) of course I leapt at the chance and I kid you not within about 3 days I was feeling fine and that one infusion kept me in remission for 2 years!! Was so worth it! I have it episodically (have one dose when symptoms return which can be between 6months - 3 years) I'm apprehensive to have it on the 8-12 week schedule favoured by a lot of doctors as the way I see it is if one dose works that well with me for that long it is mighty powerful stuff and I'm very much an "if it ain't broke don't fix it" person.