Thursday, October 23, 2014

Absence for another week

This has been an incredibly busy but good week.

My labs did finalize and all were as expected. The CD19 cells are back down to zero after the Rituximab treatment- this was the goal. All other labs were unremarkable.

I am leaving tomorrow for a short trip to relax and have some fun with my husband. We could probably do that at home but I think we are so enchanted with my new energy level we both keep planning stuff, making up for lost time.

I will catch up on labs and blogs, etc when I get back :)

Good news out of the FDA- next week they are entering into the "patient impact statement" era of Lemtrada consideration. This means all the doctors & scientists have reviewed all the data. The is the last step. So we should be hearing something about approval around Thanksgiving.

Saturday, October 18, 2014

What a Wonderful Day!

After getting a great night's sleep I woke up listening to one of my favorite silly happy music groups- the Minnutes and their song "I Can Do Anything":

Today is a new leaf, a Great Day!

For the past month I have been a bit mopey dwelling more on the stagnation of my improvement than the depth of it. My goal for many months has been to eliminate my last few medications for spasticity. I couldn't quite get there and this frustrated me. The Rituximab was making me crazy-fatigued and things just didn't seem to be going my way. 

Last night I had to take a Neurontin dose (very rare for me) to deal with scalp spasms- weird right? Well that caused me to fall asleep during an episode of my husband's favorite show Gold Rush (with my head in his lap as he rubbed my back, how cool is that?!) and sleep in the next day until 11am!

I awoke refreshed and ready to have a great day with all my energy (zapped from Ritux) returned. I realized how incredibly lucky I am to have this energy, this life and to have had Lemtrada in the nick of time. 

From the beginning of My Lemtrada Journey I had a theme song to the whole experience- "Pack up Your Troubles in Your Old Kit Bag"also by the Minnutes:

And in those lyrics were exactly what I planned- pack up my troubles, take them to Germany, leave them there and then Smile, Smile, Smile. 

Now I am truly living that dream. 

My sister has long said I have Rose Colored Glasses, maybe they got a little dust on them- the good night's sleep has wiped them clean and I am looking forward to the future and grateful for the Present that I have!

Thursday, October 16, 2014

Week 28 Labs

All the basic labs came back normal. The Subset Panel is not back yet- that will have the all important CD19 level that should be back down after the Rituximab treatment.

Those should be final by Monday or Tuesday.

Take care,.

Sunday, October 12, 2014

Relapse Redux, why me, how others are doing & why this happened

Has this happened to other recent Lemtrada patients?

I now have 3 good friends who have received Lem this year, 1 male 2 female and me. Kate is the other but I don't hear much from her. I hope she is well.

None of these 3 had a return of sensory symptoms around the 4-6 month mark. Ava & I just passed the 6 month mark Vic is about at the 7 month mark and Beth is about 5 months into her therapy.

Why? My hypothesis.
Ava & Vic are the young ones- less than 35. Ava had more significant disease accumulation despite her young age. She has seen very slow but steady improvements in ambulation but not as many as I have. She may still be improving. That coupled with high disability accumulation may be why she is not experiencing break through symptoms- her primary symptoms are still with her to a large degree.

Vic is younger and relatively newly diagnosed with very low disease accumulation when he received Lemtrada. His 6 month MRI looks so good they are wondering if this is either repair (imagine!) or possibly a different diagnosis altogether.

The important lesson here is for the newly diagnosed- YOU HOLD THE KEY TO BEATING MS! These induction therapies work best when given to young, newly diagnosed MS patients. We can almost say Lemtrada in this stage may be CURATIVE at this early stage. There is not quite enough long term data (just not enough years have passed since the first clinical trials) to be able to say this for sure. But the hope among us all is that Vic and others like him are cured!

Beth is older, around 60, but did have less disease accumulation than Ava. She seems to be responding a little better that Ava, at a slow and steady rate- especially in areas of gait, spasms, and restful sleep. She has not seen major jumps in her improvement but consistent improvement.

Why this happened to me, and not the others:

My picture is not the almost complete remission of Vic, nor the slow steady improvement of Ava & Beth. I am improving faster and living almost MS free, or close enough to consider MS a mild problem, rather than the all consuming issue of my life.

I am 10+ years out from diagnosis with significant disease present at diagnosis. I believe I am just on the cusp of when Lemtrada can be effective. I was definitely a bit beyond the optimal point of intervention with Lemtrada when I took the treatment

The MS mantra of Treat Early, Treat Aggressively still holds for the current treatments available. I was not early enough, but about as early as I could be given time limits of science & my disease progression. Vic may have hit the jackpot on disease timing & drug availability (he lives outside the US).

Once the disease has been around a few years real damage starts happening to brain cells & nerve tissue. First you lose the protective sheath around you nerves. Your brain reroutes messages for a whole but can't keep up with the damage and over time these compensatory abilities become over run & real brain volume loss (aka black hole) start to occur. Symptoms really start to overrun your life at this stage. You fail to recovery fully from "attacks" and progression happens more quickly.

I was just entering this phase- from whence there has previously been no return. Ava & Beth were probably here for a while. Vic was not even close.

At this phase there is little these anti-inflammatory drugs (like Ritux, Lemtrada, Tysabri) can do. My Tysabri therapy had been failing to halt my MS for more than a year and I was no longer stable, I was progressing, and this is an extremely bad/ominous thing in MS.

So I must fall into the latter part of what is described above. Really I think a few more months and my Lemtrada recovery would mirror Ava and Beth's. This is a really cruel disease.

I am one of the lucky ones, just not quite as lucky as Vic.

So this is why I think I had breakthrough symptoms. My MS damage is significant but I still have some compensatory mechanisms left with my nervous symptoms. When Lemtrada turned off all inflammation (part of the immune system) the parts that weren't fully altered by previous damage began their Renaissance of Recovery.

But since I am further along than say Vic, my damage is greater and symptoms started to breakthrough as parts of my immune system (as tested B cells, in the form of CD19 cells) recovered from the Lemtrada assault.

Thankfully Rituximab is available off label & available to me to hit those offending B cells and suppress this breakthrough disease.

I wish we all had time for this information to get to all who could benefit and for the ridiculous FDA to approve Lemtrada for MS, as it has already approved it in other diseases. How many patient years & brain cells have been lost because of the petty bureaucracy in Washington D.C.?

I hope they are proud of their work...

More soon on what this means for others with MS and where future treatments need to be focused. Also new trial data from a new monoclonal antibody Daclizumab will soon be released with approval in late 2015 or 2016. How this medication is given & what the options mean for other patients.

Wednesday, October 8, 2014

Recent Sensory Relapse, treated

I apologize for the long absence from the blog. I had quite a scare last month when I began to experience some disease resurgence mainly involving sensory symptoms (zings of nerve pain, numbness/tingling lasting hours and muscle spasms) and the one incidence of calf muscle seizing previously described on the blog.

With all my recovery, to almost zero disease interference in normal daily life, I was worried. I know I am on "borrowed time" with the Lemtrada treatment. No One with MS ever gets better, no one, so I guess this hit my morbidity button, thinking now it was time to pay the piper for the moths of remission I had stolen from this devil of a disease...

So, what to do... I was also starting to have some return of fatigue and anxiousness (which is quite common with MS, as you literally never know from day to day when the damn thing will make new plans for today...).

After consulting with my neurologist we decided to start Rituximab. This is another IV immune supressant brought to us by oncology (like Lemtrada). Interestingly Rituximab targets just CD20 cells (for context refer to my labs and look under the Lymphocyte Subet panel for how all my CD cells have been trending) not the entire immune system like Lemtrada.

Symptom return coincided with CD19 recovery (CD19 is the closest thing measurable to CD20 in a blood test) on my panels. As Rituximab targets CD20, and this area was recovering it is our best guess Rituximab therapy will knock out the "bad actors" for now.

And... It appears to be working. After my first dose I am already back to swimming laps 40 mins a day (although this will end soon when the solar heat can't keep up with the fall temps) and my energy is coming back up.  It is too soon to say if this is a full recovery, but it feel like one :)

With Rituximab therapy you continue to monitor CD19 cells, when they start making a recovery you retreat with the Rituximab again, it is a cycle, monitor CD19, treat when %<1, monitor, repeat... Ritux is used as a primary therapy in hard to treat MS cases and is also used to treat one of the autoimmune side effects of Lemtrada (ITP).

Bonus- this Ritux therapy may help prevent all of the autoimmune side effects of Lemtrada (various thyroid problems, ITP & Goodpastures). No additional blood work is needed, the Lemtrada labs every 4 weeks will monitor Rituximab.

Downside- I will be somewhat immune suppressed but far less so than after Lemtrada, although data show no increased risk of infection in studies.

Right now I am just thanking my lucky stars that alternatives are out there for treatment at my stage and still acutely aware that one day that Piper will demand payment because although I feel great MS is still with me, however unwilling I remain!

More soon on how others are doing, is this happening to them, and why it happened to me.

Whatever your state of health be happy with it, and do your part to improve it!