Topic: Help Please

Sorry to horn in on you CCer's but had some bad news today about my UC and have a question. Found out that after 6 months of Humira it has not worked for my UC. My GI guy called me today and got my Humira Labs back and we are now gong to try something else that has me kind of scared. First of all I will be out, really out, Monday morning as I will be getting another Colonoscopy. GI wants me to now try Remicade. Don't know why but it has me upset. I keep reminding myself that Humira had me upset at first also but I weathered it ok hope this is the same way. Anyone here tried it? Mark? It is given by IV and the first 3 doses are all in a week or so then once every 3 months and can take up to 8 hours a dose . If anyone knows anything about Remicade I'd love to be prepared. Thank you all.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help Please

Lainy, I don't know anything about it but sending hugs and prayers
Lisa

This Information Is Not Intended Nor Implied To Be A Substitute For Professional Medical Advice. You Should Always Seek The Advice Of Your Physician Or Other Qualified Health Care Provider

Re: Help Please

Thanks so much Lisa.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help Please

Morning Momma,

Sorry to hear that the Humira has not worked for your UC, grrrr to that. I've never heard of Remicade before so had a quick look around and from what I've read, it seems that infections can be one of the side effects of it so that would be something definitely to keep an eye out for. I really hope that this one works for you as you certainly deserve a break here with all of this UC stuff.

And like you say, you weathered the Humira after getting upset about that the first time around so no reason that you shouldn't be able to take this new med in your stride too once you get started on it surely. Sounds like the first stage of the new treatment will be the longest week so getting that out of the way will surely be the best thing will it not? I hope that next week goes well with this and tons of positive thoughts will be coming your way from  over here. And I'll try and jump over this weekend and make you a cuppa so you can put your feet up too!

Love ya loads,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Help Please

Dear Lainy,

I'm so sorry to hear another bad report about your UC, especially knowing from personal experience how debilitating and miserable uncontrolled UC can be. Unfortunately, since in the end first line treatments were effective for me, I do not have experience with Remicade. UC is chronic, so I certainly hope the new treatment is effective, gives you relief, and lets you get back to your life. You continue to be in my thoughts and prayers.

Mark

Re: Help Please

Hi Lainy,

Can't help you out here, but want to wish you well.  Hope it all works out.  You are a strong lady who has been through a lot.  You will get through this, too.  With a little help from your friends.  smile

Love Ya,
Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice.   You should always seek the advice of your physician or other qualified health care providers.

Re: Help Please

Thank you all. I know me and it will take a couple of days to 'mentally' work through this but in the end bring it on! Thanks Mark, I couldn't remember what you had told me but I am extremely happy for you! The thing about UC is that it controls you when you can't control it. Did go to dinner with one of my Girl Friends last night and it is where we go for Karaoke. Last night was a singer entertaining. I said to Marilise, where is Teddy he is supposed to take care of me. The very NEXT song was "I Did It My Way" which was Teddy's 'theme' song. I couldn't believe it! Guess he IS still here looking over all of us!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

8 (edited by kris00j Sat, 17 Aug 2013 16:43:35)

Re: Help Please

Lainy, sending you loads and loads of positive thoughts!! I can't help here, but I sure hope remicade works for you! Maybe you'll get your hair back!! (See? Looking at the good side!)

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Help Please

Hi, Lainy,

I woke up and saw your message. I am sorry.
I think if your have been on it for six months of Humira, you should not have problems in general for Remicade. Both drugs have the same precautions and similar side effects (ie:about lower your immunity to fight against infection.)

The dose is based on your weight in kg.; so if you lost or gain substantial weight, the dose may be different between5-20mg/dose.Most of the time ,they may just keep the same dose(usual dose is 5mg/kg/dose). It is mixed with 250ml of IV solution and will run it over 2 hours;make sure they provide you an inline filter as recommended by the manufacturer to filter the drug particles while the IV is running. And mostly as you know, they will draw your blood and run the lab work before given the Remicade.  Good luck on the colonoscopy and God bless you,my friend.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Help Please

Thanks my  Kris Cookie!

Percy, you just totally relieved my anxiety! That is just what I needed to hear...that I should be ok if I was on the Humira for 6 months and that it is much like Humira. And thanks for the filter tip, I wrote it down.
This is the best little place in the world to be, right with this family!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help Please

Lainy,

I cannot add anything relative to the Remicade, but please know we are wishing all the best for you and hoping the new drug does help.

Carl

Re: Help Please

(I hate this autocorrect... Sorry, Lainy! I know how to spell it, but keyboard doesn't!)

KrisJ
"Don't just have minutes in the day; have moments in time."
Any opinions I give are based on personal experiences, and are not based on medical knowledge. I strongly suggest receiving medical care and opinions.

Re: Help Please

Kris, don't worry about any corrections. What was the old saying, "I don't care what you call me as long as you call me?" I like the auto correct but have not seen it correct names. Hey kid, it's 111o today, yesterday was 112o. Whole week is supposed to be hot. Well, about 6 more weeks of this and the monsoon ends and so does the extreme heat. We hardly got rain! 2 more weeks and I put away my white clothes, I just can't wear them after Labor Day. I'm cwazy! I have a friend who will wear white but not white shoes!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help Please

OH my, Gav and Percy....did the Pack ever look bad! BUT it could all turn around. It's enough to make me loose interest after 1 pre season game!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help Please

Lainy -
We have done Remicade infusions at home on occasion through the agency I work for and the patients I have dealt with have not had any really problems so to speak. I know reading about all the what-if possible side effects can be scary but they got to warn you about any (and I do many any side effects ie. you might get a rash if the wind blows from the SE on an odd numbered day - totally tongue in cheek but that what it feels like). I think that it is with any new treatment....worry about the unknown.
Hope things go well for you and this makes things better for you. Good Luck and positive thoughts your way.

Kris

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: Help Please

Kris, thank-you, thank-you!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help Please

Sounds like you have some good reassurance on here! I hope everything goes well Lainy!!

Heather

My husband is my hero!!! Love him so much!! We are going to fight the best we can with knowledge, support from friends and strangers and God getting us through!!

Re: Help Please

Hi Lainy,

Sorry to hear that the Humira didn't work.  I don't know anything about remicade but thankfully our dependable, reliable, caring, researcher Percy was able to help you out!!!  Does Percy ever sleep???!!!  All the research he does for us, and the wealth of knowledge he passes on to us, is amazing.  Can't thank him enough.  I was so glad he was able to ease your mind.

Good luck Monday with the colonoscopy. I'll be thinking of you.

Love & Peace,
Mary

Re: Help Please

Thanks Mary. I will be taking my little nap, sure like the Profopol (sp). I shouldn't say that I guess, poor Michael Jackson. Tomorrow will be beef broth, veggie broth and chix broth all day. Yes, Percy is truly a living Encyclopedia!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help Please

Bless you, dear Lainy and I wish you all the best with your new med.

My beautiful daughter, Lauren Patrice, will live on in my heart forever.

My comments, suggestions, and opinions are based on my experience as a caretaker for my daughter, Lauren and from reading anything I can get my hands on about Cholangiocarcinoma. Please consult a physician for professional guidance.

Re: Help Please

Tut tut....losing interest after 1 pre season game! And you ended up winning the game..... Bring on the regular season I say! smile

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Help Please

Dear Lainy,

sorry to heat  about your illness...i am sending good thoughts and wishes from far away.

Louie

Re: Help Please

Gavin, no, sorry, I was referring to the 1st game in a shut out with the Cardinals, the team here in Phoenix. Well T always used to say he who draws first blood looses. Mmmm not sure where that came from but he used it anyway!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help Please

Thanks all of you. I do feel better, funny to be on the other side of this Board, funny but wonderful! Not starting the Remicade just yet. Colonoscopy tomorrow and the GI guy is calling the Insurance Company to get it all set up. Since I am already into Catastrophic on the Insurance for this year I am thinking that the first 3 Infusions will be less than if not in catastrophic. Thanks again I feel so much better about the whole thing.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Help Please

Lainy,

Private message me.  My husband is in the pharma industry and knows a lot about Remicade.  I know he would be happy to talk to you.

I also learned a lot about auto-immune diseases and a plant based diet.  Remove meat and dairy from your diet and you will definitely feel the effects.

http://www.forksoverknives.com/plant-ba … e-colitis/

http://www.drmcdougall.com/stars/andrew_neuman.htm