I don't remember putting up lace curtains


It started just a few minutes ago - this last recurrence of my ON, and it's making editing a little bitch, so just ignore the typos, okay? I 'll try to stay calm and remind myself that this has happened before and it went away, so the chances are good that it will go away this time too. In the meanwhile, after I read my blogroll, I was planning to read all the backed up magazines today so I can send them to the recycle bin, but ... plans change.

Last night I went to a Biogen idec sponsored talk about Tysabri which was help at the Courtyard Marriott in Tacoma. The speaker, a Dr. Vincent Macaluso, is a neurologist who has MS and has been on Tysabri for 30 months now, after nine years on Avonex. He looked healthy and well, and couldn't speak more highly about the big T. This was true also of the advocates, one of which was also a Dr. - a former neuropsychiatrist, [I have to take a break here because I can't read what I'm writing. Be back soon!]

It's been two hours, one watching TV and one spent getting a daily dose of Vit. D the natural way - sitting in the sun on the patio. This time I put on the yucky sunblock, so hopefully won't wake up tomorrow with red feet. HA - what a fashion statement that would be. I'm happy to report the lace curtain effect has gone away and I can read again. :-)

So, back to the Biogen promotion of T. The second speaker also, big surprise, had remarkable results from taking the drug. His testimonial was a joy to listen to as he told of his problem with ED (erectile dysfunction) going away. Charming, no? Oh, he also was able to give up the walking aids and now walks independently. He's now up to his 33rd treatment.

The third speaker has had MS for fewer than ten years and was a little nervous. She was repetitive and discursive, and I hope that she uses notes next time.

Dinner consisted of CHICKEN (qu'el surpris!), over done unfortunately,with green beans and smashed garlic potatoes. Dessert was cookies. All in all, it was well presented, with table service that made it easier for most of us there.

So, it left me with a few questions to take to my own neuro. I've been in this slump for so long, I guess I'm ready to try something that shows promise of improvement. I don't know what the cost will be as I am in the lower tier of those with good insurance. I have AARP/Medicare Complete from Secure Horizons (administered by United Healthcare Insurance Company plus a medical coupon which covers my Rx and Dr. co-pays. So now I pay nothing for my Copaxone. Would it be the same with Tysabri? Should I insist on a baseline complete MRI? What regular tests should I have to prevent getting PML?

Except for the slightly more frequent bad days, I'm not that much different from where I was a year ago. So, do I do nothing different and let the chips fall where they may, or test the waters by trying big T?

Comments

  1. Kim@stuffcould....May 28, 2009 at 7:58:00 PM PDT

    I feel the same as you, I am not much different in the past few years, but the T holds so much hope? I guess it is a gamble for everybody.
    Kim

    ReplyDelete
  2. MarieMay 29, 2009 at 1:19:00 AM PDT

    Tough call Webster.

    I started off on Copaxone once I was finally diagnosed. I absolutely hated it, but more than that, I kept relapsing. My neuro wanted me to try Avonex next, but with my history of depression I figured I might as well just go ahead and lie down on the highway, save some time. lol

    So the only next options were do nothing or try Tysabri.

    I started on the Tysabri exactly two years ago. I've been doing ok, but I haven't found it to be a miracle drug the way some people report. It definitely slowed down the relapses, I have only had one that I felt was serious enough to treat with steroids. But I sure still know I have MS, I still flare up under the right (wrong?) circumstances. My mobility has worsened as well.

    But my MRI's are good, no new brain lesions.

    Since the nice people at Biogen went to all the trouble of providing you with that sumptuous chicken dinner lol, I suppose it would be churlish of you not to at least consider it. lol

    If you are comfortable with your present course of treatment, I don't know if I would change anything. However, if you feel like you could do better, Tysabri might be worth a try.

    Good luck. I'm rooting for you to make the right decision for you. :) Feel free to drop me an e-mail if you have any questions.

    ReplyDelete
  3. MartyMay 30, 2009 at 5:56:00 AM PDT

    Hi Webster,
    I guess what you're really looking for is advice from people who have tried T ... so I can't help there. If it turns out to be worthwhile, I wonder why your doctor didn't already recommend it.
    Best,
    Marty

    ReplyDelete
  4. WebsterMay 30, 2009 at 8:36:00 PM PDT

    Thanks for the comments. To answer your question Marty, my Dr. hasn't suggested any changes for me, probably because when Tysabri and Novantrone came out they both had some major side effect profiles and I put a nix on them. But time has passed and the issues, at least with Big T, apparently can be monitored before they develop into PML (an untreatable brain disease. Also, he may not have mentioned a change because it may be that I have progressed beyond expected benefit and so should stay the course with the Copaxone.

    Marie, I started off with Avonex and didn't mind the shots, I also didn't have any of the side effects. It just changed my pattern of one relapse every two years to two relapses a year! Basically it seemed to put my MS in the fast lane. Since switching to Copaxone, things have leveled off.

    It's just that these speakers made T. sound like a miracle drug. And I sure could use a miracle about now. (Perhaps I've slipped back to the bargaining stage of grief! lol)

    Actually, after thinking about it for a few days, even I am not so keen on switching to Tysabri. Especially since no one came by with their own miracle story for me.

    ReplyDelete
  5. BRAINCHEESEJune 1, 2009 at 1:10:00 AM PDT

    To "T" or not to "T"...that is the question.

    Any more, I look for what is convenient for ME versus drug company statistics...they ALL spout pretty much the same outcomes, give or take a few percentages. My neuro takes offense when I refer to her prescription DMD's as VooDoo...I can't IMAGINE why?!? LOL

    ReplyDelete

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