Gains from my transplant are slipping; begrudgingly weighing Plan F

[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

[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.

[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]

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.

[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]

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.

[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.

[cdnturbo]

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

[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

[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.

[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]

Another transplant is always a possibility, IH. But there are a few major hurdles. It's pricey ($200K), risky (1-2% odds of death), and time consuming (relocation to transplant center for 2 months). That's a lot to consider if it lasts less than five years.

I'm not cratering like I was before, so I don't feel as much urgency as in the Fall of 2009, when if I didn't get it done I was likely going to be in a nursing home or six feet under. But I won't lie and say that the thought never crossed my mind to have another reset....

[IndirectHeat]

Is there any thought to trying again?

Recent MS diagnosis here (and full-time drug-discovery biologist). Given the mechanism of how people think that HSCT would work, why not have another HSCT? May just be that we need a hard reset button every few years... If the immune system contains a small number of cells that are attacking the myelin, it may be they just need to be flushed out of the system.

[ActiveMSers]

Hey CV, it halted my MS like a champ... for four years. Thanks for the note. You too, Karen, Trudy and GG. Plan F is still waiting on insurance hurdles, but it will likely be Lemtrada or Rituxan.

-D

[Cvfactor]

Dave,

I just heard your having problems in that your HSCT failed to halt your disease. I hope you find relief with another therapy.

Take Care