Today I went to my neuro to sign the forms for Tysabri. We again went over the risks and the probability of those risks. The risks of PML are 1 in 1000. Allegedly, those are the same risks for MS (though some believe it is more common than that, as people go undiagnosed). My thoughts are, if I have something for which there are 1 in 1000 odds, then I am likely not going to be "lucky" enough to make those odds again. If I am, take me to Vegas baby!
He said I can stop taking Rebarf, er I mean Rebif. That means for now, no more shots. Woot! He is hoping I can start in the next couple of weeks. He said we would do frequent MRIs to monitor lesion activity (which could mean PML, rather than MS in this case). Something I didn't know is that if PML is detected it can turn itself around if the medicine is stopped. I thought you were always screwed--and that isn't always the case, thought it is rapidly progressing and can be difficult to detect. My doctor told me things to watch for, but really, considering my immune system is not modified by other medicines or a disease such as AIDS, I feel confident.
When I told him that my feet were numb and have been for a couple of weeks, he said, "This is why we need to get you on something different." He is not happy at all with how Rebif has been working for me. While my flares haven't been serious there is combined brain lesion activity with physical symptoms. Therefore, it's not keeping everything under control.
Now, I am waiting to coordinate my insurance and other resources to help alleviate the costs. There are programs in place that can help with that. The medicine itself is $2600/month, leaving me to pay over $500. Add to that the cost of the hospital staff and supplies for the infusion and it's a nice chunk of money--one I don't have.
I feel confident, however, that I will be able to work things out. So now, it's just to the waiting.
He said I can stop taking Rebarf, er I mean Rebif. That means for now, no more shots. Woot! He is hoping I can start in the next couple of weeks. He said we would do frequent MRIs to monitor lesion activity (which could mean PML, rather than MS in this case). Something I didn't know is that if PML is detected it can turn itself around if the medicine is stopped. I thought you were always screwed--and that isn't always the case, thought it is rapidly progressing and can be difficult to detect. My doctor told me things to watch for, but really, considering my immune system is not modified by other medicines or a disease such as AIDS, I feel confident.
When I told him that my feet were numb and have been for a couple of weeks, he said, "This is why we need to get you on something different." He is not happy at all with how Rebif has been working for me. While my flares haven't been serious there is combined brain lesion activity with physical symptoms. Therefore, it's not keeping everything under control.
Now, I am waiting to coordinate my insurance and other resources to help alleviate the costs. There are programs in place that can help with that. The medicine itself is $2600/month, leaving me to pay over $500. Add to that the cost of the hospital staff and supplies for the infusion and it's a nice chunk of money--one I don't have.
I feel confident, however, that I will be able to work things out. So now, it's just to the waiting.
posted by Heather @ 2:53 PM
4 Comments:
At 6:46 PM,
Anonymous said…
You will definitely want to stop the rebif - I think my neuro told me I had to wait 4 weeks after the last interferon shot before I could have a Tysabri infusion. Also 12 weeks after the last other immunosuppressant (such as CellCept or methotrexate) for people taking those. All to keep the risk of PML as low as possible.
Best wishes on your Tysabri quest. Reading on the net, some infusion centers charge a LOT on top of the drug cost.
At 10:48 AM,
Anonymous said…
Hey Heather -
Hi,
I hope you are doing well. I work for the National MS Society. I’m writing because you have a popular group that discusses life with MS. I wanted to forward on some exciting and useful news that we hope you can help us spread.
The National MS Society has been chosen as one of nine global charities to be part of Microsoft's new "i'm" initiative!
Every time a customer has a conversation using i'm, Microsoft shares a portion of the program's advertising revenue with one of the nine non-profits in the campaign. Microsoft will make a minimum $100,000 guaranteed donation to each of these organizations during the first year of the program, with no cap on how much the organizations can earn!
Customers can participate in and learn more about the i'm Initiative by joining at http://im.live.com and downloading the latest version of Windows Live Messenger.
If you feel it is appropriate, we would really appreciate it if you would please share this with your group members. We would love to get the word out about this generous program Microsoft has included us in. Not only is it raising funds for the MS movement, it is bringing worldwide awareness to this disease.
If you are not interested in this, please excuse the email. Please let me know and I will not write with other such announcements in the future.
Best,
Annie (you can contact me at pr.associate@nmss.org)
At 7:54 PM,
Anonymous said…
This comment has been removed by a blog administrator.
At 10:07 AM,
Stephen said…
your story sounds exactly like mine - ms got worse, rebif was stopped, a month later i had my first tysabri injection. should be doing #2 in a few weeks. nice to learn that pml can reverse itself, but my neuro said my chances of getting pml are worse than my chances of getting hit by a bus. i'm not worried about either. good luck!
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