Remicade #2 today

Hi everyone!

 

Today my daughter had her 2nd Remicade infusion.  I'm happy to say that all went well (so far!, so good)   First we were told to be there at 9:30 and then we were told to be there at 8:00 am...the same thing happened last time. This hospital is the WORST but our other choice is too far. My daughter has a VERY hard time getting up in the morning because she isn't able to fall asleep until 1-2 am.  Getting her up and out of bed was NOT fun to do...and then she forgot her Kindle so she didn't have anything to do during the infusion!   they had a TV but the nurses were too noisy for us to hear the TV

I really hate the fact that we have to go through admissions every single time.  That adds another 45 minutes on to us being there and being at the hospital makes me freak out about germs!!

And the GREATEST NEWS:  today was the LAST prednisone dose    I can't wait until my sweet, lovely daughter is back!    Her evil twin has been here much too long!   I honestly cannot imagine ever putting her back on Prednisone...she has been on 5 different courses of it since Dec 2008 and she just doesn't respond to it anymore. I seriously want to say from now on that she is allergic to it! We just cannot go through this again.  Now she has to work REALLY hard to get the weight off ASAP - she has gained about 22 lbs    She is absolutely miserable with the way she looks and feels...I'm wishing for a miracle that the weight comes off super easy!

Next infusion is in 4 weeks and then we should get to move on to every 8 weeks    if all goes well.  I feel SO superstitous with everything I say!  Too many times we have thought we were past the worst and moving on to a "smooth" time and then all hell breaks loose

 Mustlovedogs

 It is great to hear that your daughter is doing well.  Have been thinking about you and her.

Just tell her GI dr. that you are done with the predisone.  My daughters Dr. agreed and never mentioned it anymore.  She even said she had been on it to long.  My daughter didn't gain the weight with predisone, but did get the moon shaped face.  Don't know what would be worse. 

Maybe the weight will start to come off once she starts  feeling better and wanting to do things.

 Goodluck to you in the next four weeks before her next infusion.  Has she seen any difference since she has been getting the remicade?

MustLoveDogs,

So GLAD to hear that things are going well with your daughter.   My son also had his second Remicade infusion on Thursday and all went well.   We go to an infusion center 10 minutes away that is run by a Rheumotologist that provides Remicade infusions to his patients.   We show up at the appt time, no registration, the nurses hook up his IV and we are in and out in less than two hours. He brings his laptop and I bring my IPAD.   You should try speaking to you GI Dr about referring you to a nearby Rheumotologist just to oversee her infusions.  That's what my son's Dr did.  They treat teens for juvenile arthritis so the nurses there really watch over them closely for any allergic reactions. 

 

I know exactly what you mean about the Pred.   We are down to 30mg a day (from 50mg) and are weaning off at 5mg every 5 days.  He has awful "moonface" and doesnt even look like himself. He has put on 15lbs in the last month and is famished all the time!  All I ever hear is the refrigerator door opening and closing and I try to tell him that the weight doesnt come off as easy as it goes on.  Do you restrict what your daughter eats?  Just wondering what kind of diet she is on.  My son is so sick of chicken and fish and I am really sick of cooking it.  He has also become addicted to turkey burgers and misses red meat alot! 

 

His next infusion is scheduled for July 28th and then hopefully every 8 weeks after that.    Thinking about you guys and keeping you in our thoughts that everything continues to go well!!

 

 

 

oh gosh, looks like I spoke too soon! :( She's been having mucous in her poop, which in the past has been the beginning of a flare. She's going to the bathroom a lot too, but no bleeding. I cringe every time I hear the bathroom door close and then hold my breath until she comes out. This is no way to live...my nerves are totally raw

SHE is the one that stresses, which makes me stress. Remember she is coming off of Prednisone and she is an emotional basket case :( We try to think positive, but all of her flares started out with the mucous. When this happens, she gets SO upset which I know is the worst thing and then it is just a vicious, ugly cycle. She is paranoid about ending up in the hospital again.
The pred taper was really slow, but I'm sure this has something to do with prednsone. I am NEVER putting her back on that drug again.

It's impossible for us not to stress I think. We have all been in the situation where a little something has turned into a downward spiral where we feel like we will never get better again. It's mentally draining. I dread the urge, when it comes on I think AGAIN??? or I wonder what will be in the bowl, will there be blood, mucous, D? It's really stressful. I consider myself lucky because this didn't hit until I was 27 but when it hit, it was like a freight train, mine was always a downward spiral whenever I had symptoms. I never got off easy. Lately I have been having some ups and downs that haven't thrown me into a flare. It is possible that she's healing and needs more time. Try to stay calm and think positive.

Have you seen the post about the antibiotic combo? I was thinking if I flare up I wouldn't mind giving that a try. I am not feeling 100% but not bad enough to take action. I am trying to control things with enemas and suppositories. I have an arsenal of rectal meds but when I am bad, they tend not to help too much.

Have you guys tried steroid foam enemas? Maybe that could pull you through the rough patch.

yesterday was supposed to be her "official" last day of Prednisone, but she ended up taking 2.5 mg later in the day. I have been doing a lot of reading and I really think what is going on is from steroid withdrawl. We will keep her on 2.5 mg for a few days and then drop to 1 mg.....hopefully that will stablize her and she will be able to go to camp on the 11th as planned (day camp, not sleep away camp!) She REALLY needs a new focus to help her out of this slump. And I desperately need to see my little girl happy again

 Hello,

   I just had my second infusion myself this past wed. I go in 4 weeks as well. It is fustrating sitting there. I leave my to go tote bage with everything I want to bring with my- snacks , drinks, ipod ect...

  That strange you have to go thru admissions every time. Thats tough. I just walk in and say my name and boom I'm in my chair. Its harder when your younger as well because you dont have as much patience :-( its very boring for anyone but when your younger its worse I think.

   Its great you daughter has you to go with her and keep her company. Nothing like your mom when your not feeling good.

   I've been on prednizone 4 times and doctor said never again. It does take a while for the weight to come off. If she is strong enough even if she can walk around a track or the neighborhood that will help and lots of water to flush the prednizone out of her system.

   Keep us posted on her. Wishing her the best