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Ulcerative Colitis
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Posted 8/12/2008 2:48 PM (GMT 0)
I had my scope yesterday even tho I wanted to cancel because my 19 month old son managed to fall and break his leg the day before I had to start the prep and I knew we'd be spending a great deal of time trying to get a doc to get him out of the splint and into a cast.

I have small patches of UC through my entire large intestines they said. Not bad but annoying. I honestly had to look really hard to see most of them so it's not all that bad which is probably why I didn't feel I was in complete remission but didn't feel like I was flaring either. He said he's never tried the LDN so he won't try it now. (grrr)

He told me he wanted to try me on Remicade but needed to check with insurance, my nephrologist and the company to see if it's safe for my kidneys to handle. However he said to my husband something about another injection that he didn't say to me. . .something starting with an H . . . any ideas what that could be? My husband was juggling a toddler with a splint so he wasn't paying 100% attention to the doctor when they gave him my results. . . I can't blame him really.
Posted 8/12/2008 2:54 PM (GMT 0)
OMG I just looked up Remicade for more information and this scares the bejeezus outta me!?!?!?!?! Is this safe???? http://www.drugs.com/remicade.html
Posted 8/12/2008 4:26 PM (GMT 0)
Humira?

If you're put off by Remicade and you want to try LDN, you should try LDN.  I wouldn't let some old goat of a doctor dictate my medical treatment.  (I mean, jeez, two-year-olds have never eaten peas, but you make them eat peas.)  Hassle as it is, I'd find a new doc.

Sorry to hear about your son's leg.

 

Posted 8/12/2008 4:53 PM (GMT 0)

Sorry to hear you may have to go on such a strong drug. 

Mostly wanted to tell you that my younger son broke his leg at 16 months and once they put that cast on he was off and running and never looked back.  They heal so fast at that age.

Posted 8/12/2008 6:50 PM (GMT 0)
LDN?  ROFL  I had started this whole scope quest asking for them to let me try LDN, just as they were starting to sedate me he commented "Oh I remember you were the one that handed my PA all that research on that LDN drug right? "(before I could answer) "You did a very thourough job but I won't prescribe that because I've never used it before and I'm not going to start now."  Then I was out of it, he did the scope and he'd talked to my husband about the Remicade and I think Humira sounds about like what my husband thought was the other one, thanks for that.  

I just feel like taking Remicade wouldn't be a great idea for me since I already have anemia issues and they warn you to have blood monitored monthly.  If I'm already having blood issues is it a smart idea to introduce more issues?  I know there are people out there on Remicade I would love to hear good and things please . . .anything!  I'm freaking a little here and thinking that it's again seems like they are taking a broadsword to remove a splinter, most of my intestines looked that nice pale pink with little splotches here and there of colitis rash. . . .is remicade really a safe route or am I asking for other troubles that he woudn't care about since he's only the GI and another specialist would have to worry about the Remicade side effects. 

Opinions and thoughts VERY needed please!

Posted 8/12/2008 7:07 PM (GMT 0)
I've been on remicade since march and love it. I have had no side effects so far at all and i haven't had blood work done at all for it. The biggest concerns with remicade are tb and skin cancer according to my doc. Remicade lowers your immune system. I don't get sick more than i used to but i had one cold that for a day i had a fever over 100. The cold didn't last longer than past colds or anything either.

I did have blood work with imuran but not remicade. I prefer remicade myself becuase I plan on getting pregnant next year and it is safer than imuran, aza, or 6mp during pregnancy. I have also met people who have been on remicade for over 10 yrs with no side effects at all.

If you are worried about your anemia I would ask a hemotologist about remicade and anemia. And of course ask your speicalist about your kidneys.

Personally remicade has been a godsend for me. For the first time in two years i can get back to my normal routines. I even got a great job that a year ago I would never have been able to do. I know that if i flare again I will probably be facing surgery but for now I am relying on remicade. I even look forward to the infusions!

I'd be happy to answer any specific questions but i know there others who have been on longer.
Posted 8/12/2008 7:27 PM (GMT 0)
Thank you Kelly. I admit with everything that's happened in the past 3 days I am on edge. I appreciate your input, it helps.
Posted 8/12/2008 8:49 PM (GMT 0)
Too bad your doctor is such a putz. 

I wonder if he realizes the only logical answer to his lack of curiosity is, "I've never tried Remicade before and I'm not going to start now."

You had a thread going about LDN, didn't you?  Was there a suggestion about another doc?

 

Posted 8/12/2008 9:13 PM (GMT 0)
Beyond the "topical" treatments of Mesalamine, everything is scary.

I can't really blame your GI for not wanting to go forward with LDN given his lack of experience and the treatment's relative lack of visibility compared to common treatments with immune system suppressors. I think that if you're really set on trying LDN, you should call around and contact other gastroenterologists and see if they have experience with LDN, then change or see the new doc.
Posted 8/12/2008 11:02 PM (GMT 0)
I've been on Remicade since March, 2006. I've been in a solid remission since April 2006 and have had no side effects from the Remicade. Humira is a newer drug in the same category which is given by injection instead of IV infusion. At this point it isn't FDA approved for UC, so insurance may not cover it. Remicade is approved and most policies do cover it.

If you want to try LDN, go for it. If it doesn't work out for you, try to keep an open mind about other treatments and/or surgery.
Posted 8/13/2008 1:20 PM (GMT 0)
Thanks for the input. I just panicked when I saw the other cancer side effects of remicade and felt that they were trading one cancer risk for another. I admit I'm jumpy these days. I'm stressing over my son to the point I was up hugging the trash can while on the toilet again last night. Smashed by a freight train would be an acurate description of how I'm feeling today. I can't seem to eat anything and what I do eat I'm struggling to keep down. Everything hurts and exhaustion has set in since I averaged about 3 hours of sleep last night. Why I'm at work I haven't figured out since I can't seem to focus on anything today.

Thanks for the posts on Remicade, it helps to know others are successful with it. I over reacted and took things way out of context. I'll wait and see what they have to tell me tomorrow. Hopefully the kidneys are ok with it and they can try it. . . . even better would be if it worked for me too.
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