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tysabri anyone?
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LauraLW posted:
Hi everyone, I lost response to Humira and Cimzia wasn't effective for me, so Tysabri was recommended. I know that it can be risky due to PML but I had the blood test to see if I'm at increased risk and now waiting about 2wks to get the results. I guess not many people are on it, but I thought that I'd seen someone mention on here that she was on Tysabri. Any information or advice that anyone can offer in relation to this medicine are greatly appreciated, and I'd love to know how it works for you! Thanks all, and hope you are doing well.
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hannahleigh89 responded:
I'm on Tysabri. I tested positive for the JC virus but my doctor told me there was no other choice, so I have two out of three risk factors. Soon to be all three if I don't get switched to another medication (being on it for over a year is the third.) After nearly 8 years of struggling and three horrid surgeries (including the removal of my colon and having an ileostomy for over six months) I'm finally starting to feel a little better.

Have you tried Remicade? I saw you mentioned Humira and Cimzia... I would start there if you haven't because it doesn't have nearly the risk. Do you have any specific questions?
 
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hannahleigh89 replied to hannahleigh89's response:
Sorry, my post wasn't quite clear. I had the surgeries and my disease became quite active again afterward. And that's when I started Tysabri and things are finally starting to look healthy.
 
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LauraLW replied to hannahleigh89's response:
Hi Hannah, thanks for replying. I thought you'd said you were on Tysabri. I'm glad you're finally feeling better. I've been on Remicade in the past and it was very effective for me, but after being on it almost a year, I had an anaphalactic reaction. Bummer. It really worked for me, so I'm hopeful that Tysabri will as well, both being infusions vs injections. And that you're feeling better makes me hopeful too.

There aren't many people on this and I guess I just wanted to reach out and see how it's working for you. My GI was hesitant to put me on this without getting a second opinion, and he had me see Dr. Loftus at Mayo Clinic in Rochester, MN. Dr. Loftus agreed this was the best option especially as I'm not eligible for clinical trials of new meds due to the ostomy. I decided not to get on it if I test positive for JC, so he said the next step is to appeal to insurance to accept a med that's currently in trials for crohns. Or to get on anti-rejection meds they give to people who have organ transplants.

You were so sick for so long, and you just needed to get well to save your life. You had no other choice at the time. You don't have an ostomy anymore? Have you ever gotten any information about clinical trials? Your risk factors are really concerning and you know better than anyone that you don't want to be on it too long, especially when you already have other risk factors for PML. Dr. Loftus mentioned Stellara (currently FDA approved for psoriasis) was in late-stage clinical trials for approval. I know you can't take the chance of getting a placebo, but I wonder if there's a way to make sure you're getting the med if you're in a study....or do the insurance appeal...
 
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hannahleigh89 replied to LauraLW's response:
I don't have the ostomy but because I have a J pouch instead of a colon, I'm not eligible for most clinical trials.
 
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LauraLW replied to hannahleigh89's response:
That's too bad Hannah. I got my results back and I also tested positive for the JC virus. I won't be getting on Tysabri, but working the insurance appeal for Stelara. On prednisone for the interim...if I am able to get on Stelara and it's working well for me, I'll let you know...


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