Gains from my transplant are slipping; begrudgingly weighing Plan F

[GerlindeP]

Another transplant...

Dave, Dr. Burt transplanted a young woman last year a 2nd time. She relapsed after only 2 years. There is a new facility in Puebla, Mexico. George Goss was/is involved in setting this up. This is outpatient treatment. Duration 4 to 6 weeks, housing, transportation and food provided during the neutropenic phase of the transplant. You need to have a carer with you. Total cost is $50k. There is a closed Fb group with all the information.
https://www.facebook.com/groups/mexicohsct/

[ActiveMSers]

Thanks, GP. I am aware of the Puebla resource and am (virtual) friends with Burt's patient. Both are food for thought for sure.

Just started on another line of therapy Sunday, which I will post about in depth separately here or in a blog shortly.

[ActiveMSers]

Here is the blog I posted on my treatment decision. I'm on month three of treatment and so far so good. Blood tests and liver tests are all normal, and no noticeable side effects. Of course as with most MS treatment, no noticeable reversal of any deficits either.

http://activemsers.blogspot.com/2015...uandaries.html

[cdnturbo]

I'm on day 3 of Aubagio . So far no side effects

[DebJC]

Transplant

Hi Dave, your last post about your transplant was in Jan. 2015. How are you now? I am sorry, but I am too sick to be on here all the time, so refer me if you have already updated your status. Thanks.

[ActiveMSers]

Deb, you can read here:

http://activemsers.blogspot.com/2015...uandaries.html

And here: http://activemsers.org/about/aboutdave.html

No major news to report, but I'm not convinced my new DMT is helping as much as I would like. The slide is continuing, albeit slowly. Might re-look at Rituxan and amp up the insurance press. The legs are most affected; cog is still solid and upper body is doing well.

As for your concerns that the forum is not up to date as you'd like on HSCT, I've actually regularly posted all of the recent research on the procedure. It has about a 50% (maybe 60% on the high side) success ratio of halting MS at 5 years (TBD on longer terms). Astonishing success rates, which is what you see boasted on Facebook ("look at me, I'm cured!"), are common in years 0-3. Year 5? Not so much. Sorry to be the bearer of bad news: don't believe everything you read on the internet.

[cgarri]

Co-opting Dave's SCT Journey for Craig's status

Just to show the variability, here's where I am.

It's year 15, and I have improved to the point I'm going to do the Walk MS for the first time ever. Just a mile. That dogged Dave would probably have done this too no matter how long it took to walk it if he'd set it as a goal. I'm a lot lazier and wouldn't do it until I could get through it without a bathroom break. It takes me 50 minutes to walk a mile.

I chart my recovery and the first three years were amazing. Things slowed way down after that, but overall I'm still improving.

[ActiveMSers]

Thanks for the update, Craig! I always point to your story. 15 years after transplant and still going strong. And you had secondary progressive if memory serves, correct?

My biggest gains also came early, starting in the first couple of months, and then continuing for 3 years.

For those tracking my progress on this thread, note that I have been on Rituxan since August (2 infusions). Still trucking along, but I am getting slower.

[Afrayedknot]

Deb, you can read here:

http://activemsers.blogspot.com/2015...uandaries.html

And here: http://activemsers.org/about/aboutdave.html

No major news to report, but I'm not convinced my new DMT is helping as much as I would like. The slide is continuing, albeit slowly. Might re-look at Rituxan and amp up the insurance press. The legs are most affected; cog is still solid and upper body is doing well.

As for your concerns that the forum is not up to date as you'd like on HSCT, I've actually regularly posted all of the recent research on the procedure. It has about a 50% (maybe 60% on the high side) success ratio of halting MS at 5 years (TBD on longer terms). Astonishing success rates, which is what you see boasted on Facebook ("look at me, I'm cured!"), are common in years 0-3. Year 5? Not so much. Sorry to be the bearer of bad news: don't believe everything you read on the internet.

I'm about to go see Dr.Burt in Chicago. I'm "RRMS" whatever that means. Already planning for my eventual/potential groundhogs day. I see there are many options. You mentioned Rituxan infusions and have also mentioned Ocrevus in other posts. BTW:I've seen these two drugs described as induction therapies in one paper. I've run across Chicago using cyclophosphamide infusions once a month for 6 months after HSCT failure. I don't know where I am going with this post. I'm just placing myself in your shoes and wondering what options there are. Maybe a discussion on this topic will help others Dr. Googling it out there.

[ActiveMSers]

AFK, Burt's MIST transplant is effective. I did just hear from one his earlier transplant recipients (2005 I believe) and he remained in remission for about 10 years—impressive. His MS unfortunately is back on the move and he, like me, has transitioned to secondary progressive MS and has started on Ocrevus.

[Spacecake]

I’m so thankful for your words and that I stumbled here after a google search for ‘need positive ms stories about exercise’
Thank you