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Tysabri 3 Years, Severe Dog Bites & Infection, Started Humira: Miserable!!

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Crohn's Disease
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Posted 8/22/2013 1:14 PM (GMT 0)
I have just went through my most horrible experience with cd in my whole life. I was on tysabri for 3years, it stopped working. Set up to go with clinical trail of whip worm study. Had to be off biologic meds for 3 months to screen in. Sent up to begin worm study in april 2013. My dogs trapped a cat in my backyard and i tried to get them off the cat, was bitten and received 50 stitches on my leg and torn the calf muscle and was put on amoxicillin. I was screened out due to huge open wound and meds. I got so sick w/15-20 liquid stools per day. My weight dropped to 90lbs. I was unable to eat, think, walk or function as a normal person. Went to hospital 7-9-13 was given fluids and started on humira and did stool samples that tested +for c-diff and ct scan showed an abscess in lower right abdomen and a fistula in mid left section. Started on pred, flagly, cipro and less than a week was in the hospital for 5 days in isolation. Was given liquid van also sent home to recover. Today is 8-22-13, still feeling miserable. Would like any and all advice from other cd suffers with similar experiences.

[* Just gave this thread a Subject title - C2]

Post Edited By Moderator (CrohnieToo) : 8/22/2013 2:53:25 PM (GMT-6)

Posted 8/22/2013 3:01 PM (GMT 0)

You certainly have had a very rough ride of late. In regards to your last line, I don't think you're going to find anyone with similar circumstances, but you should be able to get some advice none the less.

Since you've recently been on Tysabri, I can only guess that you've already tried Remicade and Humira before. Again, I'm guessing that you're going back to Humira, as this is a usual pregression.

I hope this works for you, but have you thought about other biologics? You might consider Cimzia, Stelera or the most promising new drug which should be available soon, Vedolizumaub. Worth asking your GI about.

I hope things calm down soon. If the Humira is a good choice for you, then it should get things in order.

Posted 8/22/2013 3:45 PM (GMT 0)
So sorry to hear about your avalanche of happenings. So many of us have our immune systems compromised with the many medications we take, not to mention the disease itself, that when something does happen, as your severe bites, we are very vulnerable to infections.

In my case with C. Diff. I had a respiratory infection which required an antibiotic that led to the overgrowth of the bacteria which led to sepsis. It took a very long time for me recover, but I did get better. It was the sickest I have ever been though, and I've had a lot of ups and downs to compare. So I'm not surprised that you feel so bad.

I have fistulizing disease and I hate to hear about anyone having them as it's one of the things I dread most about this illness.

I hope every day gets a bit better for you. Take care. -Joy
Posted 8/22/2013 5:33 PM (GMT 0)
I was in the first clinical study of tysabri (3years) it was pulled by the fda when people died from pml. I had to have a brain mri and spinal tap to rule out pml. Was then stared on remicade, had anaphylactic shock on third infusion. Started premeds (pred,benadryl,asprin) slowed the infusion, which took 6-7 hours. Everything lovley for 3 years. Remicade stopped working, put on cimzia for 6 months (did not work) got back on tysabri (touch program that you have to quailfy for) worked for 3 years until 11/12. Now on humria, waiting for improvement. Have had crohns, ra, myotonic dystrophy since 4/87.
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