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    Anyone have Crohn's?

    Hi Everyone,

    Not only do I have MS and type 2 diabetes, now apparently I have Crohn's Disease.

    Yes, I can assure you, it does suck to be me.

    I've been on Aubagio now for 6 mos and haven't had any major side effects. That's great right? Well now that I have the Crohn's, my Gastro wanted to put me on Remicade but my Neuro says NO WAY. Those drugs ( Humera, Remicade and Enbrel ) are all the same type and can cause nervous system problems and demyelination. OH GREAT, Now what? NEuro suggested Tysabri. It's approved for MS ad also recently approved for Crohn's.

    So I would like to find someone out there who has Crohn's or UC to see what you are doing treatment wise.

    Thanks everyone
    Sx's 5/1996 Dx'd 9/2011
    RRMS- Betaseron, Copaxone, Tecfidera, Aubagio
    Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all

    #2
    Originally posted by alliesmommy View Post
    NEuro suggested Tysabri. It's approved for MS ad also recently approved for Crohn's.
    The approval for Crohn's wasn't recent. The FDA approved Tysabri for the treatment of Crohn's in January of 2008. So Tysabri has a track record with Crohn's of 8-1/2 years, if that gives you any more confidence in it. There might be an advantage in being able to take only one medicine to treat two conditions. That doesn't happen very often.

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      #3
      Originally posted by jreagan70 View Post
      The approval for Crohn's wasn't recent. The FDA approved Tysabri for the treatment of Crohn's in January of 2008. So Tysabri has a track record with Crohn's of 8-1/2 years, if that gives you any more confidence in it. There might be an advantage in being able to take only one medicine to treat two conditions. That doesn't happen very often.
      Thanks Jreagan70, I wasn't aware of that because my Gastro dr. Didn't even know that it was approved for Crohn's which scares me more now that I know it was approved in 08. Guess I'll be going to see another Dr. You are correct in saying it would be great to treat both conditions. My only hesitation is that I've gone off 4 other MS drugs because I can't tolerate the side effects, so it scares me a little.
      Sx's 5/1996 Dx'd 9/2011
      RRMS- Betaseron, Copaxone, Tecfidera, Aubagio
      Hope is the thing with feathers, that perches in the soul, and sings the tune without words, and never stops at all

      Comment


        #4
        Originally posted by alliesmommy View Post
        my Gastro dr. Didn't even know that it was approved for Crohn's
        Uh, !

        Originally posted by alliesmommy View Post
        Guess I'll be going to see another Dr.
        Please do! Thank goodness you found out early, before you spent any more time and heartache on a doctor who isn't able to help you properly.

        Originally posted by alliesmommy View Post
        My only hesitation is that I've gone off 4 other MS drugs because I can't tolerate the side effects, so it scares me a little.
        I can appreciate that that can be scary. I've been on 16 different meds for MS. So I'd like to offer this as a bit of perspective.

        For as much time as you spend thinking, "What if I have intolerable side effects?" spend as much time thinking, "What if I don't?" For as much time as you spend thinking, "What if this med doesn't work?" spend as much time thinking, "What if it does?" Weigh out all the pros and cons and your willingness to live with the possibilities, then decide what you want to do.

        Comment


          #5
          Yep got crohns

          I was diagnosed with Crohns Colitis a few years before MS. I am surprised they wouldn't start with a less aggressive treatment first before hitting the hard stuff. In 15 years of Cronhs I haven't had to hit the hard stuff...I know it's cause I have a pretty good case. Ask why not just start on melsamine first? It comes in various forms. I take Lialda which is 2 pils in the am.

          Tysabri is not a preferred treatment for your average crohns patient but when you won the double lottery it might be the 2 for 1 treatment plan for you. I tried it for 2 infusions. It wore me out so bad I had to quit. I almost went back on it recently when I was having problems suspected to be from Crohns but found out after many tests and scopes it was my gallbladder. So I got rid of the shoddy gallbladder.

          I have noticed stopping Tecfidera messed up my GI but I never had GI issues when starting Tecfidera. Maybe because I was also taking Lyalida at the same time.

          My advice suggest a less aggressive treatment plan to start which won't interfere with ms. Lialda works for me. I did other melsamines before it as well. Also diet helps.
          Carrie

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            #6
            Just diagnosed with Crohn's

            So I was dx with MS April 2009 and was doing pretty good. That is until my husbands ex wife began stressing us out by constantly taking us to court and using their children as bargaining chips. I was on Gilenya for years but April 2015 I got hit hard with the MS and started trying to evaluate my meds. Then while going through that struggle I now have neurogenic bladder. A few months from that I had rectal bleeding for a few weeks and got the scope. They thought is was just proctitis. Needless to say life just continues to go down the toilet (no pun intended), and it evolved into Ulcertive Colitis. I was started on Lialda (4 pills in the am) and it kept things in line. In January my mother fell and got a brain bleed and I was the one that lived by her to take care of her but she never recovered and passed away on Mother's Day this year. So pure devastation.

            My Neuro put me on Abaugio 14mg about 7 months ago and I am still losing hair. The stress just keeps coming and so do the tests and now I also have hydronephrosis of my R kidney and my recent colonoscopy on Monday has now moved me to Crohn's. All of this in the past 2 years. I am not sure what the best medication regimen is going to be for me but nothing is improving anything. I am just losing all my hair along with my body functions. Does anyone else have multiple autoimmune diseases? How do you handle it? Should I just stop all medications and start from the beginning? How about handling the depression and anxiety? Any ideas?
            Wolflover

            Comment


              #7
              Crohns and other auto-immune stuff

              I was also DX with MS in 2009, but about 10 years prior to that I was DX with Crohn's and diverticulitis. I felt like I had a mild case of the flu and a low-grade fever for months. When my regular doc was unavailable for an appt, I saw another doc in the same clinic and he sent me directly to the hospital, where I ultimately had surgery to remove part of the colon. Since then I have taken a drug called Pentasa (mesalamine) and it has done pretty well to control the Crohn's.

              I still have "flare-ups" from Crohn's, but when I was taking the MS drugs (Copaxone, Aubagio, Tecfidera) I didn't notice any correlation between the MS DMDs and the Crohn's. As I'm sure you are aware, its hard to determine cause and effect with MS. I'm not on any DMDs for MS now but I'm SPMS so they aren't very effective for me anyway.

              I hope you have a PCP or another doc that is monitoring all the drugs you are taking for interactions, I give mine a new list of drugs every time I see her and she's not shy about recommending changes.

              I see a counselor and a psychiatrist for depression and anxiety. The psychiatrist helps me with the meds I need for anxiety (alprazolam, aka Xanax) and depression (Trazodone and Viibryd). The counselor is for "talk therapy" and it helps to have someone who can understand these kind of problems.

              Do you see anyone now for depression? It is a very destructive disease in so many ways that I strongly recommend seeking help if you haven't already done so.

              I am so sorry that you have had all these things happen so close together. The stress can be cumulative and it can become over-whelming.

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