"Sustained Decrease in Disability" (+30.6 months)
Merry Christmas, everyone.
"Treatment with autologous hematopoietic stem cell transplant (aHSCT) led to a sustained decrease in disability and almost no clinical relapses in patients with relapsing-remitting multiple sclerosis (RRMS) who had failed to respond to prior immunosuppressive therapies."
These are the latest results from an Australian Phase 2 trial. This is clearly consistent with my own results. I can easily imagine HSCT available in the U.S. in just a few more years.
Here on the home front, things are still improving regularly. The swapping out of my Gralise (gabapentin) for Lyrica CR (pregabalin) has really turned into a great move.
Back in Sept, doctors told me to taper off my Tegretol (carbamazepine) shortly after swapping my Gralise for Lyrica CR. I have attempted that taper several times, but I can't tolerate the increase in pain it creates. However, by using the two together, I'm doing as well as I have since before my MS-pain fiasco began.
My daily dose is a full 330 mg of Lyrica CR plus 800 mg of Tegretol. Yes, this is still a lot of medication to rely on. The difference, however, is that 800 mg of Tegretol plus 1800 mg of Gralise is both a lot of medication and a lot to handle. It definitely impairs my ability to walk and talk. Yet 800 mg of Tegretol plus 330 mg of Lyrica CR is not only better at pain relief, but it also impairs me less. Let me describe the impairment.
I still notice a problem with word-finding. This disability is most prevalent later in the day as the Tegretol has built up in my system. Problems with speech slurring and improperly combining words together is much less than previous. My physical impairment is also noticeable, but it's half as bad as it was with Gralise. Although I avoid driving at night, I feel that I'm below the legal limit of impairment, should I need to do so. I can go for a short walk and do quite okay.
As far as pain levels go, this new anti-convulsant cocktail is hands-down better than the previous one. I must mention that it took a good two months or more before I noticed the full effect of the Lyrica CR. I'm now doing yoga several times per week, and I've even hired a personal trainer to coach me. My trainer is a young, strong, smart guy around 30 years old. He was diagnosed with MS about two years ago, and he's used regular physical energy to keep his disease progression at bay. Yes, there's clinical information to support that idea. He knows MS and physical therapy.
My trainer is focusing on strengthening my left hip/leg/foot muscles. He's encouraging neuroplasticity, the development of new neuropathways from my brain to the needed muscles. He's also working on my left shoulder.
Spending money on a trainer, instead of a traditional physical therapist, is a break from my traditional modus operandi. There is no reimbursement from my health insurance for a "trainer." There's probably also no tax write-off. But the attention level is great, and it's time for a change in approach. The definition of insanity thing...
I always knew this was going to be true, but as I'm getting stronger, things in my body are working better. Thank god I was able to get enough pain relief to actually start working out.
Have a Happy New Year.
- My Stem Cell Transplant Date: June 5th, 2016
- Treatment duration: 4 weeks
- Typical onset of disability reversal: +9 months
- Typical complete recovery from procedure: +1 to +2 years
- Typical maximum reversal of disability: +2 years
I am not a doctor. I am a scientist (engineer) who has had MS since March 2013.
- AHSCT and Progressive MS. Conflicting Studies (Year 6.4) - UPDATED
- Check-In (Year 5.2)
- No New Activity on MRIs (Year 3.6)
- Bloodwork Back To Normal (Year 3.3)
- Why Neurologists in the US Don't Recommend HSCT (Month +35.8)
- Better Pain Management (Month +33.6)
- Final Re-Vaccinations & The Medical Cannabis Primer (Month +32.9)
- "Sustained Decrease in Disability" (+30.6 months)
- No Progression Seen on MRI (Month +29.7)
- Cruising Along (Month +29)
- Nerve Decompression Surgery (Month +21.8)
- Looks Like It Worked (Month +17.2)
- Further Pain Improvements (Month +15)
- Significantly Lower Pain (Month +14.4)
- More Thoughts About MMJ, Meds & Pain (Month +13)
- +1 Years and Counting! (Month +12.6)
- Better & Better (Month +11.5)
- Major Pain Improvements. Finally. (Month +10.6)
- DIMS, SIMS and the Medicine Cabinet in the Brain (Month +9.6)
- Sliding Sideways ( Month +9.2)
- Pain, Pain, Go Away! (Month +8)
- Doctor: MS in Remission! (Month +6.75)
- Neuroplasticity (Month +6.1)
- Hopefully, My Last MRIs, Forever (Month +6)
- Chemobrain (Month +5.2)
- Kickin' and Screaming (Month +5)
- Month +3.7 Progress Report
- Fresh Foods Welcome! (Month +3.2)
- Thoughts About Pain (Month +3)
- Making Good Progress (Week +12)
- First Followup Rituximab Infusion scheduled (Week +9.5)
- Walking Towards Improvement (Day +54)
- Neutrophils Recovering Appropriately (Day +39)
- Less Pain Lately. Horray! (Day +25)
- The Highs & Lows of Recovery (Day +22)
- Homeward Bound (Day +12)
- Treatment Complete (Day +11)
- Final leg of the procedure (Day +10)
- Healing fast! (Day +8)
- Neutropenia (Day +6)