MS Varient & considering Tysabri

[Landellet]

I do not have MS. I have an autoimmune disorder that mimics both MS & NMO. But since I also have lung involvement its is clinically neither MS or NMO. I am going to start Tysabri asap. I have been on Iumran in the past but could not tolerate it. I have also been on Rituxan and many prednisone tapers and solumedrol infusions. I am curious if anyone here has started using Tysabri after already using Rituxan, Solumedrol or Prednisone.

I took the JC Virus blood test last week and am still waiting on the results. Regardless of what they are I hope to start Tysabri next week.

I am 28 young mother of 2 and would love to talk to anyone else my age dealing with MS or MS variants like I have.

[0485c10]

Everyone here has used Solumedrol & Prednisone fewer have used Rituxan or Imuran before starting Tysabri.

The fda has said chronic use of steroids should not be used with TY, but the use of short term steroids for the treatment of relapses is ok.

People with MS are required to be in a monitoring program and see their neuro every 6 months while using tysabri. This monitoring program is call TOUCH Program in the US, CARE in Canada & TYGERIS in Europe. I'm uncertain if i have the names right for the program outside the US but it is something like that & i am just trying to point out that no person that uses Tysabri for MS is not in one of these programs. It is not recommended the person have used an immune suppressant before tysabri because that increases the risk of PML..

BUT tysabri is also approved for the treatment of moderate to severe crohns disease in the US. I don't think it is approved in Europe to treat Crohns

And the people using Tysabri for the treatment of crohns have their own monitoring system, not the Touch program but what ever they call it for crohns?.

In the crohns monitoring program they need to get a colonoscopy 6 months after starting Tysabri to see if the amount of lesions have been reduced..if not its an automatic stopping of TY, no more than 6 months is given to see if it helps.

I believe immunosuppressants use is more common in the treatment of moderate to severe crohns disease than MS where immune modulators are the most common treatment before starting Tysabri.

Until recently it could be said that no one with MS has ever gotten PML before 12 months on TY. Just recently a person got PML after being treated with TY for 6 months after having used Imuran i think it was.

In the original trials for TY a person being treated for crohns got PML after 8 months after being treated with immunosuppressants in the past.

The fact that your doc is seriously considering TY after your prior use of immunosuppressants tells me he is running out of choices for you...and to date from everything i have read of prior experience(at least what was published and i found)you are safe for 6 months, long enough to find out if TY would be helpful to you. If it is, that another bridge to cross. there are trials going on right now to get rid of the JC test in those that have it.
if it doesn't help you stop it and the whole issue becomes irrelevant.

Post of person who got PML in 6 months....

http://www.msworld.org/forum/showthread.php?t=115918


Last year at the ECTRIMS conference, 2010 biogen reported the risk of PML over time for people with MS. Got to run right now but I would be willing to dig it up later if you are interested & i'm certain i have posted it many times before in other threads. Good luck. I hope Tysabri improves your disease.

[Redwings]

Hi Landellet:
Since you didn't say which autoimmune condition you have -- and why it's a variant of MS and not some other condition -- it will be difficult for folks here to know if they have "MS variants like I have." There aren't that many MS variants, and some conditions that used to be thought of MS variants (e.g., NMO and ADEM) are now considered not to be. Can you be more specific about your condition?

Your use of Imuran and Rituxan puts you at increased risk of developing PML. I agree with 0485c10 that, if your doctor is considering putting you on Tysabri knowing about your increased risk of PML, s/he must be running out of treatment options for you. I don't want to retread ground that you may have already been over, but it's a serious enough decision that it should be made in consultation with MORE than one doctor. I know how my own doctors think and, with your risk factors, they would recommend trying a couple more immunosuppressant meds like Cellcept or methotrexate or even Cytoxan before even considering Tysabri. Beyond that, they wouldn't consider Tysabri for a nonapproved use.

Would you mind sharing with us what your doctor's rationale for Tysabri is considering 1) your increased risk for PML and 2) the probable scarcity of evidence that it will be effective for your unnamed, variant condition?

Steroid use doesn't seem to be a risk factor with Tysabri. By the time most people start Tysabri, they've already been through at least a few relapses that were treated with steroids, so it's likely that you'll get some responses by folks who were on steroids before Tysabri.

There's one thing that comes up in forum discussions about Tysabri that does relate to your situation, but maybe not in the way you might expect. Young mothers with small children often cite the risk of PML as being their reason for NOT going on Tysabri. They don't want to take a medication that could kill them, at least not before their children are grown. In addition, about 80% of people who survive Tysabri-related PML are moderately to severely disabled afterward (data from Biogen Idec). That's as a result of PML, not the condition they were taking Tysabri for. MS has a small risk of killing people at all, let alone before their kids have grown. Since you didn't give us much information about the condition you'll be taking Tysabri for, we can only image why the risk of medication-induced death or disability is less than the possible outcome of your condition if you don't use Tysabri. But it's interesting to note that, for parents, the risk that Tysabri could take them away from their families is often cited as the reason they won't use it.

Also, Landellet, can you share with us what the process was for getting the Tysabri TOUCH program to approve you for an off-label (unapproved) use of Tysabri?