MS treatment update

As it’s just easier to get it all out there at once, here’s the scoop. If you haven’t read the previous MS update, it’s right here: Holiday stress and other fun things.

So, onto the update. We went to the neurologist today, after a second JC Virus test was higher than the first (.49 for the first, .57 for the second. These are “titers”, showing how many anti-bodies my system has created to fight the virus). She wants to take me off of the Tysabri, which has been given by infusion every 4 weeks, and change me to Tecfidera, which is a pill taken twice a day. She feels this is a safer option, and the fact that I’ve been on the Tysabri for a year and a half and just now gotten a positive is normal and should cause no problems. Also, the heavier treatment of the Tysabri should have gotten the MS more under control and going down to the Tecfidera should pose no problems for me. And the concern of the JC Virus is lessened, but they will be checking my white blood cell count (I forget the name she actually used for it, but am using the information she gave me for the white blood cell info).

This will mean I’ll have a lapse in treatment of about 4 weeks. I won’t start the new medication until about 8 weeks from now (and had my last infusion on Friday). There are some side effect to be aware of, but nothing that I haven’t dealt with before with other medications.

I, of course, worry that I’ll start having problems, but I trust this doctor. And I definitely DO NOT want to risk PML. There is some risk of that with this medication as well, but it seems like it’s less, and easier to keep an eye on. Which is good… I don’t need to turn what little brain matter I do have into mush! 😉 Unfortunately, it also means another pill to remember in the morning… which I’m not good at. I’ll have to just have some on me so when I remember after I’ve gotten to work, I can take it then.

On a side note, tomorrow (January 11) I will be having an epidural for my herniated disk that we had to wait for almost a year to find out about (mind, part of that was my fault, but the insurance company would have rather had me jump through hoops rather than do an MRI like my doctor wanted. It would have cost them less if they’d just done the MRI… now it costs them a bunch of PT visits and then the MRI. 😛 ) That has me a little concerned as well, as I just don’t know what to expect. But I’ll find out tomorrow! Hopefully it’ll just mean less pain and more ability to be on my feet without having my left leg hurting.

So, that’s the current state of things. I will update more when I have more to update. Until then, here’s an adorable (albeit slightly blurry) picture of Ruiny getting one of her many bathes from her big sister/mom, Guin. <3

Ruiny getting a bath from Guin. This is every day... multiple times a day.

Ruiny getting a bath from Guin. This is every day… multiple times a day.

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12 Responses

  1. Sounds like some decent news and some not so decent…???

  2. First the Good news and then the not so good news…but news, none-the-less. Just kee[ in mind how much you are loved and by so many persons (including all of my Family). If I could help…I would help. But I can’t…so I keep you in my prayers…always. <3

  3. Thanks all. It’s not a “woe is me” kind of thing, though. I just know there’s a lot of people out here who have wanted to know what’s up and this is just the easiest way to tell everyone. I’ll get through this because I have amazing support. <3

    (oh, and Jon can tell y'all I'm more whiny about my stupid paper cuts right now. Fuckers hurt!)

  4. She’ll be ok, we always get through what we have to get through. If the new treatment doesn’t work we’ll we’ll move on to the next one. We’ll take care of what needs taking care of, that’s just the way we handle things.

  5. You have a good support system to help you through this! Hugs coming your way!

  6. Kathie says:

    Love you. Thanks for the update. Good luck with the epidural.

  7. alene says:

    *hugs* thanks for the update. I’m always thinking of you.

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