Libra55 and others with IBD

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, Mar 24, 2006.

  1. MamaDove

    MamaDove New Member

    I couldn't believe my ears just now...My hubby has the tube on and I hear a commercial for Ulcerative Colitis...Of course I sprung out of my chair (now my hip is out, but I didn't want to miss it) and couldn't believe what I was seeing...An ad for those that are having trouble keeping their UC in remission...UUUGGGGGHHHHHHH!!!!!

    We have finally made the BIG time...

    They direct you to their site LivingwithUC.com where they are trying to sell you on the idea of Remicade for remission of UC, Crohn's, ankylosing spondylitis, RA, etc...

    Guess there are many more out there suffering from this and they can make big bucks off remicade now...

    I wonder who the guinea pigs that were tested with this drug that they determined within a year or so (based on the original commercial that remicade was a NEW treatment for RA) that it was also effective for all these other diseases...

    My gastro, who I just saw yesterday, was preparing me for my next flare and said there was no doubt that I would benefit from IV remicade, the cost of which is $3,500 per dose...I think he needs a new car myself, he has been 'mentioning' this drug every time I see him...

    I achieved remission using 500mg Cipro recently after declining his 3 other protocols, all of which can be deadly...

    I am getting tired of these docs pushing these dangerous drugs to 'cure' these dd's which are supposed to have NO CURE and focusing on the relief of symptoms rather than what the ACTUAL CAUSE is and address it...

    I swear, sometimes I think they give us these diagnoses to ring in the cash and keep the economy going...We all do support big corps with all our dd's...Why cure us? That would leave them with empty pockets...

    For those who trust their docs and their opinions, I am sure you disagree with my tone...I am happy that you found someone you believe you can trust...I however, have been thru the wringer with healthcare professionals and have ZERO faith in their recommendations being anything other than a monetary benefit in their favor...

    If you care to reply with comments, please do so...If you get something beneficial from that site, please share, I may be missing something...

    Gonna go start din-din now...

    Peace to all~Alicia
  2. MamaDove

    MamaDove New Member

    Bumpity bump bump bump...
  3. libra55

    libra55 New Member

    I checked out the website, took the questionaire (which of course is the bait to draw you in) then went to the Crohn's section. It is informative, but no new information for me. Yes, I did pick up the recent references to Remicade, here and there, interspersed with all the various treatment protocol.

    My GI has never even mentioned Remicade. Right now I am on 6-MP only, with folic acid and supplementation (vitamins, iron, etc.) and a nightly sleeping pill (Klonopin).

    I saw the man Tuesday, he is planning a liver ultrasound for me, a repeat colonoscopy in May, and possible a barium swallow. We have discussed Asacol on and off, but I am doing well now so he does not want to rock the boat.

    I think I remember you said you had problems with the Asacol and it did not agree with you. Was it oral or suppository/enema? I don't want to do any enema's - ugh. I heard the d**n stuff stains the floor and the toilet bowl, I don't need that stress.

    I don't remember if I asked you before, do you have any fistulas? If you have UC you probably don't have them but they are common with Crohn's. I have one that I know of and it is a monster. It wraps around my umbilical from the inside.

    I guess it all depends if one's insurance would pay for the Remicade or not. I heard it's expensive too.

    They also talked about another drug on TV. Tysari or something like that. It's for something else entirely but now they're saying it's good for IBD. Does that ring a bell with you?

    Thanks for the website, interesting reading.

    (((((((Hugs to you)))))))
    Michelle
    [This Message was Edited on 03/24/2006]
    [This Message was Edited on 03/24/2006]
  4. libra55

    libra55 New Member

    just bumping

    Michelle