Would like to hear about teenagers' experiences with Tysabri

A board to discuss the newly-released drug Tysabri, (formerly known as Antegren) as a treatment for Multiple Sclerosis

Would like to hear about teenagers' experiences with Tysabri

Postby dinbuo » Thu May 10, 2012 5:33 pm

Hi, I'm new to this forum, and I live in Toronto, Ontario, Canada.

My 14-year old daughter was diagnosed with RRMS one year ago, and we are almost at the end of our ropes! She has been hospitilized at least 8 times in one year because the MS is extremely active. She seems to get relapse after relapse after relapse and only short periods of remission. She has been on Copaxone, steroids, IVIG, Cyclophosphamide and more recently is receiving Plasmapheresis. The neurologists want to start her on Tysabri, and her JC virus test just came back negative.

First of all, are there any other teenagers out there who have had similar experiences and if so, what, if anything has helped?

Second of all, if there are teenagers who are currently using Tysabri on this forum, I would love to hear from you about your positive and negative experiences with this medication.

Tysabri hasn't been used much on children/teens in Canada, but I understand there are many teenagers in the U.S. and in Europe who have had successful results with Tysabri.

Any valuable information, specifically with teenagers and Tysabri, would be truly appreciated.

Thanks.
dinbuo
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Re: Would like to hear about teenagers' experiences with Tys

Postby maxi14 » Fri May 11, 2012 11:44 pm

My daughter is now 18 but was diagnosed just under a year ago and has just completed her 8th Tysabri infusion. She had multiple attacks in short succession and was put on Tysabri straight away. Since taking the Tysabri she has not had another attack and her only sympton has been fatigue ( although sometimes its hard to distinguish between teenage tiredness and MS tiredness) She has the infusion every 4 weeks and is given a sedative 15 minutes before to calm her as she doesnt have very good veins and it takes a while for them to get the line in. She has had a MRI after the 4th infusion and no new lesions can be seen on her brain. At the one year mark they will be testing her for the JC virus again as a precautionary matter. She has no side effects after the infusion. It takes about 2 hours , 1 hour for the infusion and a one hour flush with saline to make sure you get a full dose. There is a younger girl of 14 that is getting infusions in the same hospital but was just being shown around the room to familiarise herself so had yet to start the last time we were there. You have to fill out a questionaire each time you go before the infusion. We are in Australia and not many teenagers here had used it in fact when my daughter started she was the youngest in Australia and we had to get special permission to use it. Hope that helps. :-D
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Re: Would like to hear about teenagers' experiences with Tys

Postby dinbuo » Tue May 15, 2012 11:23 am

Thank you for responding and for letting me know about your daughter's progress. I am happy to hear that she has not had another attack and that there are no lesions since being on Tysabri. You mention that when your daughter started she was the youngest in Australia to use it. That would probably be the case for my daughter as well, since she is 14, going on to 15 in June. I am concerned about this age thing, as they really don't have much experience using the medication in younger teenagers/kids, so I am hoping that things go well. You also mention that she started Tysabri right away, which I assume means she did not try any other medication. Did the neurologists give you a reason for having her go on Tysabri right away, as opposed to her trying one of the disease modifying treatments first? The doctors here only gave us the option of Tysabri after all other options were tried first and did not work.

My daughter will probably start receiving Tysabri in mid-June, as the neurologists indicated that the Cyclophosphamide (chemo) treatment (last infusion was in March) needs to be out of her system at least 3 months before starting Tysabri.

Any further information you can provide would be great. Thanks very much.
dinbuo
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Joined: Thu May 10, 2012 4:04 pm


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