tag:blogger.com,1999:blog-2747230250579415057.post8175758641997753076..comments2023-08-18T04:28:00.494-04:00Comments on Maybe I'm Just Lazy: One Woman's Journey Through MS and Life: The lesions are active! The lesions are active!Julie M. Bakerhttp://www.blogger.com/profile/13202264108356942158noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-2747230250579415057.post-84120020325498075552009-05-30T15:33:02.625-04:002009-05-30T15:33:02.625-04:00I am getting ready to enter a clinical trial of Ca...I am getting ready to enter a clinical trial of Campath at the Univ. of Michigan hospital. It is also a chemo drug but NOT FDA approved as an MS treatment. I'm scared to death but I developed an allergic reaction to Copaxone and the Refif was making me so ridiculously depressed. I've been off Rebif for two months now and about 1 month after stopping the injections, my emotionally well being did Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2747230250579415057.post-12339111444000939202009-05-16T14:19:00.000-04:002009-05-16T14:19:00.000-04:00Well, I'm glad to read that your attitude remains ...Well, I'm glad to read that your attitude remains (+), but sorry to hear that you have "active lesions"...<br />Sounds like you are continuing to be proactive - after all, you are your own best advocate for your health. Hang in there.Valhttps://www.blogger.com/profile/03152215204773184788noreply@blogger.comtag:blogger.com,1999:blog-2747230250579415057.post-79867665224441566082009-05-15T10:25:00.000-04:002009-05-15T10:25:00.000-04:00Hi there! Guilty lurker here.
I just want to say...Hi there! Guilty lurker here.<br /><br />I just want to say that years ago when I was first diagnosed, I took cladribine tablets which was a form of chemo. Although it made me deathly sick, hair loss, and all that good stuff, it did help me. I chose to go off of it because I started fertility drugs to get pregnant and the two didn't jive. <br /><br />Cladribine was backed up with monthly Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2747230250579415057.post-90347368199262412292009-05-15T09:43:00.000-04:002009-05-15T09:43:00.000-04:00Oh and the monthly steroid treatments are called "...Oh and the monthly steroid treatments are called "pulse" steroids are are also a well-established treatment. I was fortunate to tolerate them very well but, unfortunately, they didn't work--as far as the MRI results were concerned. I think they were helpful for fending off symptoms and a full-blown relapse.<br />Lazy JJulie M. Bakerhttps://www.blogger.com/profile/13202264108356942158noreply@blogger.comtag:blogger.com,1999:blog-2747230250579415057.post-57417503555728012552009-05-15T09:34:00.000-04:002009-05-15T09:34:00.000-04:00I feel very fortunate to live in Boston. If you ha...I feel very fortunate to live in Boston. If you have to have MS (which apparently I do), I feel like there isn't a better place to be treated. The Partners MS Center where I go for treatment is part of both Brigham and Women's Hospital and Mass General Hospital--two of the world's leading research hospitals. <br /><br />In the year and a half or so since I was diagnoses, I have heard of many Julie M. Bakerhttps://www.blogger.com/profile/13202264108356942158noreply@blogger.comtag:blogger.com,1999:blog-2747230250579415057.post-56783984407320509412009-05-15T08:29:00.000-04:002009-05-15T08:29:00.000-04:00You have taken a route of treatment that is totall...You have taken a route of treatment that is totally foreign to me...To be totally 100% honest it scares me a bit.<br /><br />In my opinion, (which could/should mean nothing to you honestly), I would consider tysabri, or maybe even doing a clinical trial if your treatment isn't currently working. I wouldn't let the PML worry you, most of the people who died from that also had another condition to Jackiehttp://www.themsblog.comnoreply@blogger.comtag:blogger.com,1999:blog-2747230250579415057.post-77265114450266015332009-05-14T23:07:00.000-04:002009-05-14T23:07:00.000-04:00Sorry about the active lesions. I'm really curiou...Sorry about the active lesions. I'm really curious to see how your chosen treatment works out for you. I've thought about Rituxan since it is used for RA (which I also have). But even with 90% insurance coverage, the cost would be too much.Lisa Emrichhttps://www.blogger.com/profile/10862232056342347990noreply@blogger.comtag:blogger.com,1999:blog-2747230250579415057.post-81518963273201131892009-05-14T22:40:00.000-04:002009-05-14T22:40:00.000-04:00Julie--keep me posted on your progress---my neuro ...Julie--keep me posted on your progress---my neuro is all about the chemo, as well. But there weren't 8 US cases of PML.<br />Only 1, since the reintroduction. Everything else is out of the US.<br />Biogen has to post data every month.<br />Here's the link, just so you can keep an eye on it, in case you need to think about Tysabri.<br />http://investor.biogenidec.com/phoenix.zhtml?c=Erinhttps://www.blogger.com/profile/15064990547132030888noreply@blogger.com