First Remicade Infusion tomorrow...safe to do outside of the hospital?

I did mine for about 9 months with a rheumy doc until I moved. They may be more prepared than a GI doc for a reaction since they deal with more older people. I know his office was well staffed for it.

Hello Mother....I just checked with my husband. He had 5 infusions at a nearby infusion center. If he needed the bathroom the medicine is on an IV pole that you can wheel into the bathroom if your son needs to. I assume you will be with him to help him. Can he wear a depends type undergarment just to give him a little relief off his mind if he doesn't make it to the bathroom in time or there is some bleeding?

I'm sure your Dr is sending you to a place that will be ok for your son in his current condition.

I hope the infusions work for him - they help a lot of people and the results are usually fairly fast too. Best of luck.

I always had my infusions at a clinic. I think my infusion nurses were amazing and right on the ball if anyone became ill. Good luck to your son today; I hope he has good results and can get back to living life again.

I go to my Dr's office and see an infusion nurse who does all types. I think I prefer that to a hospital. It's cozy, just four lazy boy recliners and usually me or 1 or 2 other people.

I feel safer there, the nurse knows what to look for and her only job is to take care of us. She stays in the room, gives me heated blankets and is super nice. My last infusion we spent the whole time just talking about places we have travelled to. She gave me really great care and makes me feel like she is there for me.

What is it like in a hospital? Do you get your own area, nurse, comfy chairs and heated blankets?

Thank you all for your replies...long story short, didnt get the infusion yesterday.   Dr's office was still fighting with the insurance company over coverage and they finally approved it at 7:00pm central time last night to be shipped today for his first infusion tomorrow.   He is not doing well.    Seven trips to the bathroom since 2am this morning. Horrible cramping.  Mostly blood.  They did more labwork to check Hemo levels and if they have dropped significantly they will not wait until tomorrow, but admit him to the hospital today.  

Has anyone heard of taking Methotrexate with the Remicade?   the Rheumotologist at the infusion center that we saw yesterday recommended it, since he will be stopping the 6mp.  I read up on some of the side affects and they are scary! (as are all with these drugs).   I was just wondering if anyone else on here was prescribed this drug along with the Remicade.

Thanks

 

Hello, I was recently diagnosed with UC after months of unknown and wrong diagnosis.. My doctor prescribe the Lialda 1.2g X 4 a day. And I started taking a prenatal vitamin because it has double everything in it so it is very helpful if you have and deficiencies going on. I have read a lot about the different types of drugs available and have tried Lialda, Asocol, and recently Aprizo. I am now going back to the Lialda. It worked the best for controlling a lot of the symptoms, including the bleeding. I am not sure if your son has tried the Lialda or not. Just a suggestion… I am feeling his frustrations with the feeling ill for sure. Is his bleeding the only exacerbated symptom right now?

Thanks WM1,
How is your daughter doing?

He did not have a good day today. Probably the worst since he was originally diagnosed in Feb.   From 2am this morning until 3 pm today he was in the bathroom every 20-30 minutes,  he was wiped out and finally slept from 3- 8pm today.  My best friend is a GI nurse.  Brandon told her tonight that he is ready for this next step... this disease has totally exhausted him, both emotionally and physically. I can see it in his demeanor.   I am not a very religious person, but I pray that he finds relief with the next medication. 

Thank you all for your support.

Our Dr. said MTX and Remi are given together because they are synergistic. Our first Remi is scheduled on Thursday. I told the Dr. how I did NOT want her on both drugs and he said depending on how the Remi works, we can consider stopping the MTX sometime.
Hope your son is finding some relief...sounds like he has really had a rough few days!

Oh, and my husband has his Remi at infusion centers (it's MUCH less expensive, too) They even said they could come to our house to do the infusion

Worried Mom: what medications did you try before deciding on surgery? Sometimes I think surgery would be easier...but I feel like we have to try it all before we get to that step. I am so glad to hear she is doing so well!

Mom of teen....

We were in your place a couple of years ago. I remember so clearly when Dillon was spending ALL day in the bathroom, was so sick and so down.

Monday night we had some friends over to watch the hockey game and I actually sat and watched Dillon for a long time. This was the day that I had read the posts by the person that was saying what a terrible choice surgery is.
I watched him have a sparkle in his eye and laugh SO EASILY. He was eating spicy nachos, having a few beers and had not a concern in the world. My emotions overcame me. I actually started to cry and had to come up with an excuse as to what was wrong with me.

My point is that even though you are in a such an awful place right now just stick with it, work with your doctors and whether it be through medications or surgery you guys will find something that works and you will have your daughter back.....we are testament to this

Cathy

collicat,

I just wanted to thank you for your help during my daughters surgery. Everytime I read your posts to someone with a child I still cry. You don't realize how much you have helped. As a mom you only know what it is like. You understand about the sparkle in their eyes. I know what you mean. I see it pictures before uc , when she was sick, and now after surgery. Yes I have my daughter back. But with the teenage problems that go with being 16 years old. lol. Wouldln't change it though. Thank you so much again for all your encouraging words.

worried mom