Wednesday, February 25, 2015

Absence from the Blog

I will be on vacation starting 2/25/15 until 3/10/15. I will not have much access to the internet during this period (the best type of get away) so any comments left here will be answered on my return.

Good news- it seems the first round of US doc training to prescribe Lemtrada has just been completed. Call your neurologist to see if Lemtrada is not available in your area!

Good luck to everyone staring in March- I know there are many of you!

Keep Hydrated- the best way to make it through Lem Week :)

Take care,

Friday, February 20, 2015

Sites Currently Infusing Lemtrada in the US as of 2/20/15

Here is an updated list of the currently approved infusion centers as provided by members of the closed Facebook Group "Lemtrada for MS Treatment"

If you are not a member of this group I would encourage you to join. Members are from many countries. This is the primary group for English Speakers. There are other closed groups for other primary languages.

Advantage of a closed group: after you are accepted (it is almost automatic, im not aware they exclude anyone), the comments you post there are NOT a part of your common page. So if an employer or other person whom you do not share your diagnosis with looks you up on facebook they will not see any posts you make to the closed group page.

I have found people in this group to be helpful and optimistic. :)

Thursday, February 19, 2015

"You are taking Lemtrada and Rituximab concurrently. Should I?"

"You are taking Lemtrada and Rituximab concurrently. Should I?"

I am now getting this question from quite a few potential Lemtrada patients. I answered one woman's question via email but thought I would repost my answer- since this question seems to be coming up all the time these days.

The writer is a 31 year old Australian woman diagnosed in 2014 but with symptoms going back to 2010. Her EDSS  (expanded disability status score) 1.0-2.0- so low and she is considered 'newly diagnosed' in the Lemtrada World.

Australia is going to start infusing in April and she wanted to use Rituxan with Lemtrada. Here is my response to her: 

You sound like a great candidate for Lemtrada- young, relatively newly diagnosed  (counting back to 2010) and a low EDSS score (we don’t really use those in the states but I know what they mean).

For your case- based on the details above, Lemtrada is likely all you need. I know Australia is going to start infusing in April so I would recommend claiming your spot on the infusion list. Right now would be the time to do the screening procedures and possible vaccinations- depending on your vaccination history (or exposure to chicken pox)  this might delay your Lemtrada start date. If you don’t understand why- ask I can answer.

I need the Ritux because my MS is much older than yours (diagnosed 11.5 years as of Feb 2015) and I have established lesions you have not accumulated yet (basing this again on the details above). Ritux is generally its own treatment and used in cases that don’t respond to other therapies (prior to lem being approved- I am unsure if docs will still use Ritux as much because Lemtrada would be better).

Let me see if I can explain why- and if you don’t understand please ask- I tend to be long winded, so I apologize in advance for that.

OK, here goes:

A bit about the immune system- your White Blood Cells (aka leukocytes) are divided into 5 subclasses- but we are only going to talk about Lymphocytes here- it is the only one you need to worry about for this discussion.

Lymphocytes have different types- the main being T and B cells. More specifically all lymphocytes are further divided into CD types based on the protein expressed on the outside of the lymphocyte cell. You may have heard of CD4- important in HIV. The HIV disease attacks the lymphocyte that expresses the CD4 protein on its cell wall. Does that make sense?

Think of these cells as circles with bumps on the side that say “I am a CD4 cell or I am a CD19 cell” There are over 300 CD types CD1-CD326 have been identified. See the little sucker looking thing- those are the proteins telling the other cells "I am this type":

Image result for cd4 cell picture

Now here is the difference between what Lemtrada does and what Ritux does.

Lemtrada enters your blood stream and destroys all Lymphoctes- every one in the blood stream (some are hanging out in organs or the lymph system and Lemtrada doesn’t reach those areas, but this is a very small %). So CD1 to CD326+ are destroyed (we believe).

The immediate effect is to stop all Lymphocyte activity. This includes the ability for the WBCs to attach your central nervous system CNS(brain and spinal cord). All inflammatory activity stops everywhere in your body. You are unable to produce a fever (an immune system function) and may be more susceptible to disease because your ‘disease fighters’ are damaged.

When we run blood tests you will see the CD3-CD20 (common ones measured) are all 0 one month out. The hope is that when the immune system grows back (Lemtrada does not affect bone marrow, where the new cells are made) it will ‘forget’ to keep attacking the CNS. The thinking is this that this break from inflammation is immediately good for the CNS but these effects keep happening years after your Lemtrada doses- improvements still being seen 3+ years out from your first dose.

If you want to look at my CD counts I have attached them belowl. It might make more sense by looking at real #s. So you are not confused, look only at the T&B Subset section and follow the trend.

That is what Lemtrada does in a nutshell.

What Ritux does:

Ritux is selective- targeting only the area of the CD subsets around CD19 and CD20. These are primary B cells (Lymphocytes are subdivided into T&B cells- Lemtrada kills both, Ritux just one specific B cell area of the CD cells).

Ritux does not have an indication for MS but doctors (in the states mostly) have been using this drug for 5+ years in cases where no conventional MS medication worked. It worked ok in those hard-to-treat patients.

Ritux is selective. Lemtrada kills them all- basic difference.

Dosing schedule for Ritux
First dose 1gm given at the same time after 1gm of IV steroids are given (basically the same pre-treatment protocol as Lemtrada)

Some docs will repeat this IV Steroid and Ritux 2 weeks later. This is the standard protocol for Rheumatoid Arthitis (RA) treatment, one of the approved indications for Ritux use. Some docs will not. There is some variability because it is not approved for MS so doesn’t have the govt required dosing schedule for MS- so we use the doing we know is safe in RA.

When is the next dose?
(you will need to reference the lab chart here and find the lines that say %CD19 and Absolute CD19)
When the CD19% (or if your lab can do a CD20%, this is newly available in the last 6 mo here in the states) increases over 0 (so when it pops up anything other than zero), time to re-treat.

Docs check the CD counts in Ritux patients every 3 months or sooner if the pt is symptomatic.

Treatment is generally needed every 4-6 months and then only with one treatment (not one 2 weeks later).

Why you only need Lem and not Ritux

If you follow the lab chart again you will see on Aug 23 labs my CD19% jumped from 1% on July 24 to 45% in just 28 days. That coincided with a return of some sensory symptoms for me. I informed my doc  and he is proactive with Ritux and suggested we try Ritux because it targets the CD19/20 and this was what was elevated- so maybe that was a problem (we are all lab rats in this).

It worked beautifully.

So it is definitely an option for you if this happens to you- but it probably wont- and research of 15+ years says it is unlikely in a case like yours.

This was also an experiment by my doc- so really no one else is doing this. There is thinking (no research, just based on what we know about the immune system) that a tiny dose of Ritux- like 50mg instead of 1gm- MIGHT be beneficial in reducing the likelihood you experience on of the 3 long term problems with Ritux- thyroid, ITP and GoodPastures. There is no evidence of this- but it will likely be studied one day.

I hope most of that makes sense and I also hope you get Lemtrada April 1, 2015! 

Sunday, February 15, 2015

Centers in the US Certified to Infuse Lemtrada

Below is a list of Centers and Doctors infusing Lemtrada in the US.

This list was compiled from information provided on a the "Lemtrada for Multiple Sclerosis" facebook group.

I will keep updating this document as more data comes in. Both the doctor and the center have to go through training before they can infuse. So many centers/doctors are going through this training right now.

If you know of a group that is infusing please post a comment below and I will get the list updated with that information.

On note on the Cullman, Alabama center: Dr. Chris Laganke is VERY dedicated to agressively treating MS. His mother was diagnosed  when he was just a boy. It has been his life mission to find effective treatment for MS.

Here is a great story about this wonderful doctor:

Friday, February 6, 2015

Amazing- Things are Still Improving!

I honestly did not think I would be posting any longer on NEW improvements in my disease or symptoms. I really thought all improvements had happened and I was looking forward to being stable.

The improvements that happen now are more subtle and under the umbrella of incremental positive changes- vs Hit You Over the Head things that have already happened- like improvement in eye sight or regaining the energy to do everyday things or the return of the ability to drive and also have energy to go and do what I drove to! :)

I will elaborate more after the weekend, but just a tidbit.

Stamina, stamina and more stamina- I have returned to the gym 4-5 days a week- am doing cardio interval training and weight training.

I can tell things are even easier to do now compared with 6 months ago- when I thought I was doing well- combining multiple activities into a single day with no fatigue

Complete resolution of numbness or tingling in any area of my body- save for a quarter-size spot on my left foot- which I actually appreciate is there, more on why later

Improvement in swallowing- a common problem in MS- but connected to a cranial nerve- so like the eye improvement this is very much tied to specific brain pathways so I thought this would never improve.

I will continue to think of small things that are improving- there are many- and return on Sunday to finish this post after weekend house guests are gone.

The main thing I want to say- is that 9 months out things are still improving- 

and MS patients just dont do that- 

they NEVER improve- 

and 9 months after 5 days of 1 medicine

 I am still seeing improvement- WOW- what does the future hold?

Off to clean house- because I can do that now! :)