The very real dangers of stem cell transplantation for multiple sclerosis

[ActiveMSers]

I just got this from a fellow ActiveMSer and I wanted to pass this along. Heartbroken. She's 51 and was studying to get her PhD. I've always been frank when people ask about HSCT, and it bears repeating.... this is still a treatment of last resort for individuals with extremely active multiple sclerosis. Don't underestimate the risks. - D

---------------

Hi Dave,
This is XXX from XXX. Sorry to hear about your accidents....I am having my own share of traumas. You may recall, I did the [Northwestern] HSCT and completed it December 2015. Well, my thoughts of victory have faded quite quickly. The treatment and high dose Cyclophosphomide and R-ATG has caused more harm then good.

After 4 hospitalizations from complications, I now have found that I am dwindling quite quickly. My immune system has never regained working condition. My WBC's are now less than 2.0. I have lost cognitive function, motor function and inability to eat due to chemo eating away my GI tract.

[REDACTED]

Recall, I too am a Physician and stopped practicing when MS became too severe and turned to working on a PhD in Epidemiology and teaching. Hence, I am well aware of biased research and reporting of results that are not clinically significant, nor efficacious.

Please help to get the word out that HSCT is "a sledgehammer approach" with significant mortality.

I decided years ago that when MS was too painful to bare that I would gracefully exit. I am entering Hospice after a long hard fight.

Please warn others to cautiously approach new treatments until the safety is well established.

My thoughts are with you, keep up the fight!

[ActiveMSers]

A few of my comments over the years. I stopped trying to fix all the errors on HSCT internet sites ages ago--there were just too many... -D

"It's easy to get caught up in the hope of HSCT, especially if you are newly diagnosed and scared of your now-uncertain future. You want the MOST effective treatment, and you want it NOW. Sorry, this is absolutely not for you."

"Who is this for? People with rapidly progressing disease who have failed multiple treatments and are still in the active part of the disease (typically RRMS or PRMS)."

"This treatment has a ton of promise and offers hope for the future, but I would recommend it only in extreme cases like mine."

"The mere mention of stem cells for multiple sclerosis conjures up a dreamy future free of MS where we all dance among the flowers with harps playing in the background. But that's not reality—that's just the side effects of the stem cell hookah too many people have been smokin'."

[Suebee]

Dave, thank you for passing along this brave woman's warning. I hate this disease. I hate the silent suffering and desperation. I hate everything about what it does to our bodies, our families, our careers. I hope her message is heard by all MSers but also all entities who develop, regulate, care for, sell, and market to us.
I send my engery and prayers to this woman and be with her and her loved ones.