tag:blogger.com,1999:blog-2838498765761167784.post287539084733864656..comments2024-01-29T11:48:55.990-07:00Comments on Dave's ActiveMSers Blog: Treatment QuandariesDave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.comBlogger21125tag:blogger.com,1999:blog-2838498765761167784.post-66801875224402374982017-02-13T16:07:22.694-07:002017-02-13T16:07:22.694-07:00Luis, after taking Aubagio for a year, I moved on ...Luis, after taking Aubagio for a year, I moved on to Rituxan as my insurance company approved it. I feel still I'm slowly sliding, but the Rituxan appears to be helping stem that tide. I've been on it a year. More details are in our forum.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-35394401810754337302017-02-13T15:53:23.550-07:002017-02-13T15:53:23.550-07:00How you doing with aubagio...Thanks luisHow you doing with aubagio...Thanks luisAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-70458939688932351182016-05-15T08:07:09.307-06:002016-05-15T08:07:09.307-06:00I appreciate how you show your thinking about the ...I appreciate how you show your thinking about the various medications, as it's a complex field of hard choices Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-12315070816766551382016-02-27T08:50:42.782-07:002016-02-27T08:50:42.782-07:00This comment has been removed by a blog administrator.Anonymoushttps://www.blogger.com/profile/17391709212821694772noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-37538656796356539442016-01-04T15:58:29.950-07:002016-01-04T15:58:29.950-07:00Interesting, Matt. Combo therapy could be the wave...Interesting, Matt. Combo therapy could be the wave of the future. Keep me posted!Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-13839609914432035282016-01-04T15:22:18.825-07:002016-01-04T15:22:18.825-07:00I am on Aubagio AND I did Lemtrada. DUAL therapy. ...I am on Aubagio AND I did Lemtrada. DUAL therapy. If you have questions feel free - it's been one heck of a rideMatthttps://www.blogger.com/profile/06222791729495816471noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-91547635400723005512015-11-05T19:17:57.979-07:002015-11-05T19:17:57.979-07:00Buying time should not be underestimated. But this...Buying time should not be underestimated. But this disease holds no prisoners. I would be in far worse shape without HSCT, no doubt. Keep me posted on your progress too.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-74629988742190267472015-11-05T18:47:39.840-07:002015-11-05T18:47:39.840-07:00Thanks Dave. I am in the process of asking my neu...Thanks Dave. I am in the process of asking my neuro about Aubagio until Ocrelizumab is approved. Will see what he says. My balance has been worse and foot drop worse since HSCT and as you know,most studies show that ten years or more after transplant, most patients relapse and start to progress. The active inflammatory stage is only one component of several driving this disease. Until neuroprotection or the mechanism of progression is understood, this promising treatment will only buy time. Let me know how you do with Aubagio. Anonymoushttps://www.blogger.com/profile/09278030761059706294noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-12482566545527924972015-11-04T17:38:52.217-07:002015-11-04T17:38:52.217-07:00Thanks for the note, TGE. Unfortunately, every twi...Thanks for the note, TGE. Unfortunately, every twinge will fire up your worry zone on the brain. Maybe it's progression, or maybe not. Best to keep a positive attitude and stay aggressive. In retrospect, I should have been more proactive and gotten on treatment post HSCT as soon as I noticed some slipping. Smart to have a plan.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-53884464992641503672015-11-04T17:30:57.152-07:002015-11-04T17:30:57.152-07:00Hi Dave,
I too finished HSCT last year in Florence...Hi Dave,<br />I too finished HSCT last year in Florence, full BEAM cocktail. But when I did it, I was possibly early SPMS already. Tough to say when Tysabri may have covered up any active inflammation on MRI. I'm only one year post transplant, but the treatment affected my foot drop, which is worse now. Or was it progression? You are correct, Rituximab may not be covered, although I have been wanting to get on it due its anti-b cell properties. Interesting and timely read on Aubagio. I did not know it had effect on b cells. So, until Ocrelizumab is out next year, Augbagio it is. Thanks for the post and insight. Anonymoushttps://www.blogger.com/profile/09278030761059706294noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-85272347622587102362015-10-23T10:10:13.428-06:002015-10-23T10:10:13.428-06:00Thanks Jamie! Settling on treatment means weighing...Thanks Jamie! Settling on treatment means weighing lots of pluses and minuses. Alas, never straightforward.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-50132893299820112622015-10-16T20:40:02.322-06:002015-10-16T20:40:02.322-06:00Sending you my best Dave! Thanks for sharing your...Sending you my best Dave! Thanks for sharing your thoughts, your experiences and your reasoning behind your decision-making. I started taking Avonex, a weekly injection, and after 15 years of that, I'd had enough. Didn't want to be a pin cushion anymore. I've been on Gilenya for the past two years, however, I've just stopped taking it due to too many white blood cells in my system. I'll meet with my neurosurgeon in a few weeks to discuss my next steps too and will discuss Aubagio with him. Please keep us updated with your well-being. You are an inspiration to us all! <br /><br />Stay strong!<br />JamieJamie Forresthttp://googlenoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-56282238223018316062015-10-16T05:57:00.023-06:002015-10-16T05:57:00.023-06:00Best of luck Dave, it is very good for the rest of...Best of luck Dave, it is very good for the rest of us having the benefit of your thought process. Keep up your great work.Avril Hnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-42871785995621219402015-10-11T17:52:58.582-06:002015-10-11T17:52:58.582-06:00Thanks LMH! And yes CVFactor, that was definitely ...Thanks LMH! And yes CVFactor, that was definitely HSCT. No recent hospital visits thankfully. Thanks for the well wishes.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-80076745217484685562015-10-11T08:45:55.738-06:002015-10-11T08:45:55.738-06:00Best of luck with Aubagio Dave. Is that picture of...Best of luck with Aubagio Dave. Is that picture of you in the hospital recent or is that from the HSCT procedure?CVfactornoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-20720280582376306972015-10-10T10:27:10.365-06:002015-10-10T10:27:10.365-06:00Dave, I'm also pondering my next move as I pl...Dave, I'm also pondering my next move as I plan to come off Tysabri. As usual your post was so informative, and perhaps Aubagio is now something I will look at. I'm either transitioning or have moved in the SPMS stage. Ever hopeful for new treatments that are on the horizon like Ocrelizemab. It's so wonderful to have this site for support and information! Thanks a million! <br />LMHUnknownhttps://www.blogger.com/profile/14775610966023855819noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-65802235411002207662015-10-09T10:30:06.922-06:002015-10-09T10:30:06.922-06:00Anon, Canadians are always cheery. Keep up up the ...Anon, Canadians are always cheery. Keep up up the grinning (or is that a wince?)!Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-67784456214420041982015-10-07T16:26:11.927-06:002015-10-07T16:26:11.927-06:00I feel your frustration Dave. I was diagnoses in 2...I feel your frustration Dave. I was diagnoses in 2005, refused drug treatment because I rebounded quite quickly.<br />I moved to secondary progressive in 2009. I appreciate your blog and above all your honesty. I am on tysabi (seemingly without any effect) and soon I may move on to <br /><br />It is frustrating and one feels the need to be pleasant and upbeat when you have an appointment (or is that because I'm a Canadian ?) so thank you and carry on the good fight! <br /><br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-48997131231563685622015-10-07T11:58:48.205-06:002015-10-07T11:58:48.205-06:00Joren, keep me posted on your Lemtrada experience....Joren, keep me posted on your Lemtrada experience. Interested to see how it goes post HSCT. And thanks for the wishes, Yvonne! You always brighten my day.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-70725498242192627102015-10-07T11:36:21.644-06:002015-10-07T11:36:21.644-06:00Hi Dave Sending you healing wishes and hoping tha...Hi Dave Sending you healing wishes and hoping that Aubagio works great for you. I have to comment on the opening words of your post. Grumble, grumble, grumble... It reminds me of a song we used to sing in chorus in elementary school. It goes, "Grumble, grumble, grumble- this is no fun. You don't have to like it cause it's got to be done!" That's all I know of it which is a bummer as now just those lines will be stuck in my head all day... Good luck my friend...Yvonnehttps://www.blogger.com/profile/06304463986247875388noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-3265170488714370252015-10-07T11:32:58.196-06:002015-10-07T11:32:58.196-06:00I'm sorry to hear you seem to be progressing, ...I'm sorry to hear you seem to be progressing, Dave. Good luck with the AUbagio, you certainly make a great case for it, and hopefully it will slow or stop things long enough for you to get Rituxan or Ocrelizemab. I had HSCT two years ago in Russia, and was just infused with Lemtrada two months ago. I'm hopeful. There are infuion centers popping up all over the country, so maybe the wait wouldn't be as long as you think should you decide to go that route. I know at first I was totally not on board with the risks, but looking at them closely I decided they were pretty manageable, but it took me a few months of soul searching to get there. At any rate, so many of us are rooting for you and wishing you well, and I for one appreciate you thinking out loud with us on all things MS. Take good care, JorenAnonymousnoreply@blogger.com