Hello all

[nickfym]

hello all

hey guys and girls, my name is nick i just registered so i thought i would tell u a little about my story. i have crohns disease got diagnosed in the 7th grade im now 28, long story short i will get to my recent condition, i havent had a flare up in 2 years but i have also been on double dose of remicade for 2 years, i took it once before couple years ago but my body formed anti-bodies against it so it stopped working. well got that one straightened out then had flare up(2 years ago) so my doc decided to make it a double dose to see if i succeed bc ive tryed everything under the sun humira and all nothing works but remicade for me but im currently having problems with my crohns which i will post a question about on another thread anyway good to meet you all feel free to ask me anything you would like........

 

[Keona]

welcome to the forum Nick!

 

[xJillx]

Hi Nick and welcome. Though there seems to be so many treatment options today, there still isn't enough. Are you improving with the double dose of Remicade? I have to say, I haven't heard of this approach before. But I sure hope it does the trick for you!

 

[ameslouise]

Hi Nick and Welcome!

Glad the Remicade has been keeping things under control, but sorry to hear about the "other problems" with your Crohns. It really affects so many aspects of our lives, doesn't it?

You'll find lots of good advice and knowledgeable people here on the forum!

- Amy

 

[domflo]

Hi Nick Welcome

I am also new to the forumn today. And i was also on a double dose of remicade for about eight years. I was diagnosed with CD when i was about 15 years old. They tried all the usually drugs Prednisone, Asacol, Purenthol (6mp) stacked with lots of antibiotics like Cipro and Flagile. Many of these meds didnt work or like im sure we all have experienced had wicked side effects. Long story short I got my first dose of remicade at 16 years old and was on it up until 6 months ago (im now 24) they gave me a single dose in the hospital after a very bad flare up and it worked great to get me to bounce back. However my doctor didnt feel it was neccessary to continue with the remicade after that. but i wound up back in the hospital in less than 2 months they then tried to give me the single dose again and it had no effect. So they then bumped me up to a double dose. After that Remicade worked wonderfully for me within a few months my disease was in remission and almost all my symptoms dissapeared or atleast were tolerable. Things stayed that way for years, every now and then we would juggle the frequency in which i had it infused but never more that every 8 weeks and never less that 6 weeks. I recently started a new job and found out my insurance would not cover remicade, i was crushed. I tried everything but after being off of the drug for about ten weeks i had an extremely bad flare up losing 22 lbs and winding up in the hospital numerous times. I wound up getting the Remicade donated by Johnson and Johnson only to find out that it still costs over 1000 dollars each time to have it administered. as sick as i was i felt i had no choice so i payed out of pocket to have it adinisterd and it worked great just like always. by the time i got in my car to leave the infusion i alreadt felt a 100 times better. i have since found a foundation that would pay for Humira (no outta pocket expense since its self administerd) so i am currently in the process of switching over its been about 6 weeks since my last Remicade infusion and about two weeks since my introduction dose of humira. i am hoping the humira will kick in before the effects of the remicade wear off and i have a flare up again. all in all i think Remicade is a great drug for the treatment of CD for me anyway and had i not had insurance issues definatley would have remained on it. Im glad Remicade works well for you also.

Best Wishes for good health to you all.

Great to be part of the forumn,

Dominick

 

[nickfym]

thanks everyone this seems to be a great site for all of us that have uc and cd hearing others stories and getting to know what works for people and what hasnt, and for domflo i feel your pain man your story sounds exactly like mine all but the insurance problem sorry to hear that, i to have been on all the meds you were talking about and that flagle man i hate that drug with a passion bc of its side effects that stuff that grows on your tongue and it always made me feel like i had a bubble in my throat all the time so when i talked it didnt sound like me at all lol, and as for the prednisone i was on it for 5 years when i first got diagnosed and ended up getting osteoporosis i was a teenager with the bones of a 70 year old man thats what it did to me so i had to come off it and start on drugs to fix that problem but i got it fixed in a year

 

[CDDad]

Hi Nick,
Welcome to the forum.

 

[keepsmiling21]

Welcome! I hope you find this place to be the support and help that you need!