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Crohns & MS
Date Joined Apr 2009
Total Posts : 15
Posted 6/1/2009 8:46 AM (GMT -7)
Due to having MS I can't take most treatments for Crohn's. Now my Imuran is not working so my doctor said my last options are Methotrexate or Tysabri. Wondering if anyone has any insight into these?
200 MG Imuran
8 pills a day of Asacol
30MG Prednisone (because Imuran is not working)
Weekly Avonex Injection for MS
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Date Joined May 2009
Total Posts : 16
Posted 6/2/2009 1:00 AM (GMT -7)
Hi, no sorry, I dont. Im a little on the fence myself. They dont know what is wrong with me yet. When I first came down sick, it looked like ankylosing spondylitis. All my test have been negative. I started having eye inflamation and IBS. Besides joint stiffness and aches,pains.
The I started having other pain all over. Stiffness, fatige. They said its fibromyalgia. But there are lots of weird things. Nubness, clumbsy-ness, I find myself moving kind of weird at times. Like some weird nerve deal.
I was offered the methotrexate, mainly for the irits at the time. But I was a little afraid of it. Ive heard bad things, and Ive heard that its not so bad. Seeing as my stuff is only slowly getting worse, Im now thinking about
taking it. Im only 29, a young strong, healthy looking guy.
Im in pain all the time, I just deal with it, the best a man can. The fibro is like playing a football game, as others say. But some of the weirdness I have doesnt seem like fibro.
The IBS from crones or UC is the worst. And scariest. I have yet to be certain of which I have.
I did test a mid posotive for S. cerevisia IGA. My last doc told me to show my GI, when I fianaly pushed myself to go. My GI doesnt seem to worry much about
that or my strong symptoms. I told them Ive thought about
going to the ER at times.
But because they did an upper GI scope and didnt see anything. Its like they arent worried about
my main complaints, witch are IBS and a general destroyed fealing. Im no longer going solid.
They said I was negative for celiac. So I dont know what the hell to do. I have rhumatiod arhritis in my family. But no crohn's, spondyli***, or other stuff. No UC.
Just rhumatoid aurthritis and cronic fatige in the family. Sp Im thinking about
taking this drug. I fear the infection and cancer possibility. And liver probs worry me too. Ive never even heard of this tysabri. And my mom's a nurse. Its all worry causing to me. Im not a medicine person.
I realy would like to get some diagnosis before I take something like that.
This could be quite a few things. Everyone who gets a diagnosis should be glad, its better to get that bad news, thAN TO FIGHT AND STRUGLE TO FIND OUT WHAT IT IS AND WHAT TO DO.
Ive had quite few test, but not as many as others in my situation. I think this fibromyalgia is something else, these doctors have lame excuses and no answers for me. They realy dont care. Im screwed. But they offered me a drug like this, not knowing exactly whats going on.
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Date Joined Aug 2007
Total Posts : 884
Posted 6/2/2009 9:28 AM (GMT -7)
Crohn's & MS, most drs and insurance companies are going to prefer you try methotrexate first. It is much cheaper, has many more years of research to back it up and, although I know all drugs have risks, is probably overall safer. I don't know how Tsyabri is given, but methotrexate is normally taken by mouth once a week (can be injected if you have side effects to the oral). I just started it recently and have had no side effects that I've noticed. I'm on it for my arthritis.
Crohn's Disease, Acid Reflux/Gastritis, Hashimoto's Thyroiditis, Endometriosis, Arthritis, Depression/Anxiety. Too many meds to list them all. =)
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Date Joined Jun 2009
Total Posts : 354
Posted 6/28/2009 7:10 PM (GMT -7)
I know how you feel, I've had crohn's all my life,I suffered allot as a kid, going to hospital all the times, some doc's even said it was just because I didn't want to go to school. So I went unmedicated for 10 years. So of course my crohn's got worse the older I got. I am now 24 on remicade and from this hard core un barable arthritis pain. I am also conisdering Methotrexate now but very scared, as I would like to have a child in my futur. But the pain so just so bad, as well as unable to work for the last 2 years. I might take the Methotrexate and go with Humira. Has anyone had children after taking MTX? I wish you the best in luck to know what you have real quick. Good luck, hope it was a pain free day folr everyone!
24 year old woman. Crohn's all my life but diagnosed at age
on prednisone 8 times. which they will not give me anymore(doesn't work for me)I am on Prevacide for the ulcers I get in the stomach. I have cronh's in the small bowel,colon,stomach. Since Nov 08 I've been suffering from RA which is just as bad as CD. haven't been able to work for the last 2 years. Awaiting to start Humira since being on Remicade for 1 year 4 months that no longer works.Hoping to get my life back with Humira
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Date Joined Apr 2007
Total Posts : 134
Posted 6/29/2009 7:09 AM (GMT -7)
I don't have MS, but after an incident with Remicade I can't take TNF blockers either.
I'm on MTX, and yes I often worry about
some of the side effects. But Tysabri is far more...risky.
Do the conservative thing first, which is actually MTX in this case.
22 Female, currently on MTX. Previously on Imuran, Remicade, Pentasa, etc. Ileocolic resection in 2006.
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Date Joined Mar 2006
Total Posts : 42
Posted 8/5/2009 6:03 PM (GMT -7)
I have had crohn's since 1983 and after trying everything i recently started Tysabri. Yes, the PML risks are scary, but they are miniscule (like .05% chance) and aside from that, Tysabri has a much better side effect profile than MTX. I used to do weekly MTX and man, being nauseated all the time got old fast (i have enough nausea from the disease itself!). On top of it all, i don't really think MTX did much for me after 8 months and i was taken off it.
THAT SAID: You also have MS, and are taking Avonex. I believe that many of the MS patients who died from PML were also on Avonex before starting Tysabri. But with the Touch program, they should be able to catch signs of PML early, and as someone with both diseases, Tysabri could truly be your holy grail. I wouldn't rule it out, but i would try MTX first anyway. FWIW, i have a friend with terrible MS who has been on Tysabri for 4 years and considers his MS as having been in remission the entire 4 years as a result. He calls it the wonder drug that works wonders. I got my first infusion 3 weeks ago, and so far i feel good. Good luck to you!
Crohn's for 27 years, since I was 8
5 surgeries so far, i have tried almost every treatment there is. My core recommendations to live with Crohn's are: get Remicade/Humira/Cimzia if you can, get abdominal massage regularly, and learn to make healthy and easily digestible protein shakes for yourself.
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