Wednesday, November 19, 2014

Still Improving!

After the small setback in September with some sensory symptoms my improvement seems to be back on track!

I was told to look at improvements at the 6 month mark as this would be my new baseline. At 6 months all of my motor symptoms were abolished. I have no more issues with pain or balance. My eyesight and fatigue level have improved dramatically. I no longer have any sensory symptoms and best of all:

My Memory is Improving!

I continue to be amazed at what a game changer Lemtrada has been for me. This last symptom to begin its reversal was probably most shocking of all. Over the past 2 months I began to notice I was forgetting less, or rather, remembering more. My sudoku puzzles (which I had stopped doing) were suddenly simple. I could remember the plot line of my favorite tv show. All these things seem small but when you take essential abilities like this away you begin to feel 'lost' within your own daily life.

I truly feel the inner 'me' is being restored- not just the physical me.

The conventional wisdom with Lemtrada is that if you provide your central nervous system a break form the attack by your immune system, the body's natural repartitive processes will begin to heal the damage of MS- as long as nerve cells (specifically their axons) are still intact.

Most of my axons must still be intact because this improvement continues. I would think after 11 years diagnosed I would have lost some brain cells to this disease but it appears that much of my cranial 'scaffolding' is still there and able to be repaired.

More talk continues on research forums about preventing the autoimmune side effects of Lemtrada with the use of very low dose (10-20mg) of Rituximab. The thinking is that post-Lem the body's immune subsets recover too quickly and become over zealous. If we can slow parts of this process a bit with an agent like Rituximab the body may not go overboard so much. For a detailed academic discussion of this topic please see the MS Research Blog here.

There you will also find another Lemtrada improvement idea- decreasing the rash, headache and malaise that can come during the actual infusion by giving the medicine subcutaneously (under the skin) instead of by IV (through vein). I did not have any negative effects during infusion and neither did Ava but some people do and it can be very uncomfortable- but manageable.

The reaction comes as millions of white blood cells literally split apart spilling their contents into the blood stream. If you think about common flu symptoms- they include fever, malaise, headache, body aches. All of this happens as a result of the immune response by your body- NOT the actual virus. When the virus attacks, the immune system responds by making an environment 'uncomfortable' for the virus. The same thing is happening in the Lemtrada infusion administration. As the cells burst the contents that cause fever, malaise, headache, body ache etc are released. This also happens with the interferon used to treat MS and the same principle is at work.

The rash is caused by histamines released by the WBC in the same process- think of Benadryl (diphenhydramine) an 'antihistamine' to soothe rashes.

The thinking of subcue dosing is that the drug is absorbed more slowly. The WBC lyse slower and the body has less of a reaction to the lysed cells.

The reaction can be controlled other ways with pre-medications. This is what Ava and I did (she is an MD, I am a NP so we understood the biology). We took the recommended pre-medications and augmented as we knew our bodies might react.

For me this mean- requesting a taper of steroids so that they were given all 5 days. Taking Bendryl (a histamine blocker) instead of Claritin + recc Rantidine (aka Zantac- another antihistamine). Taking something additional for headache/malaise- a member of the ibuprofen family + recc Tylenol (paracetamol). Your center will have options for you. Plan this part of your infusion well and you should have few if any problems during infusion.

Sunday, November 16, 2014

Week 32 Labs posted, CD20 Pending

Week 32 Labs have returned. All but the CD20 have returned. This is the first lab set I have requested that lab. Depending on cost I may or may not continue to have it drawn.

Most of the interesting points are within the T&B cell subsets. If you want a primer on these please see Subset Explained at the bottom of the post.

CD3, CD4 and CD8 continue to make improvements. There is talk that CD8 suppression may allow for more myelin production. Mine are not normal yet but are recovering. Interesting I seem to still be making significant improvements over the past 1-2 months. More on those specifics in a separate posting.

CD19 still <20. This is the cell we targeted with Rituximab when sensory symptoms re surged. I am having no such symptoms at this time. We are awaiting the CD20 results. They are still pending. This test is actually called Rituxan sensitivity so it will better monitor this aspect of my recent treatment. It will be interesting to see if recovery of the CD19/CD20 again will coincide with any sensory symptoms or if this was just a fluke for me.

Interestingly these are back down. This may be a result of the recent Rituximab or just a fluke. It will continue to be monitored monthly.

Thyroid, Platelets and Urine all normal
This is important for the 3 known long term side effects of Lemtrada:
Thyroid problems (~30% of Lemtrada treated patients) (LTP).
ITP- blood clotting problems (2-3% LTP) and
Goodpastures, a kidney disease so rare it is hard to assign a frequency possibly <0.3%.

Lemtrada Primer

Below is a pilfered re-posted from the awesome MS Research Blog along with a few of my comments. This Blog is an awesome resource for all those interested in MS resarch and topical discussions of such. I high recommend reading it every day. The primary site is: direct link:  MS Research Blog

This particular article can be seen on this link within the site: Lemtrada Overview, posted 11/14/14

I have made some formatting changes to make is easier to read but I cannot take credit for the content. This belongs to Professor and Dr. Gavin Giovannoni. See here for his Bio

Saturday, November 15, 2014

Lemtrada is approved in the US- Updated with the Press Release

Finally the FDA has approved Lemtrada in the US!

This will bring a great treatment and a lot of hope to MS Americans. I have been talking to both treated and patients waiting for Lemtrada treatment. I have come to realize what a HOPE this treatment brings even to those who may not be best suited for this drug.

Lemtrada is effective Treatment, the most effective we have at present.

But almost as important is provides HOPE to all that science is continuing to innovate in ways that have the ability to dramatically improve our lives. This gives us as patients more reason to keep going, not give in to MS.

There are Lights are at the end of the tunnel and they aren't always Angels calling you home!

Here is the Genzyme Press Release:

Tuesday, November 11, 2014

New Lemtrada Patient

Someone reached out to me through the blog. She has an inspiring story that she has allowed me to share with you. Here is her story:

I've just recently found your blog. I was first mis-diagnosed with a brain tumor and less than 6 months to live. I had multiple secondary opinions and was then correctly diagnosed with a rare but very aggressive form of MS called Marburg Variant MS.  

Luckily, my cousin whose a GI doc was friends with a neurologist that specialized in MS. My neurologist immediately admitted me into the hospital for plasmapheresis and IV Solumedrol. I went through 9 rounds of plasmapheresis and I lost count of all the 1gram of IV steroids. 

Nothing was stopping my attacks so as a last resort my doctor arranged for me to enter the Lemtrada trial. This was back in Nov 2013 and I was probably one of the last patients admitted into the trial here in the US. 

The 1st day I started Lemtrada I was in a wheelchair and by the 5th treatment I walked in with a walker. 

By week 3 I was cruising around the house without any assistance but if I was out and about I would use a cane. A week or so after that I ditched the cane all together. 

I should be receiving my 2nd round of Lemtrada this month but my CD4 level is to low. My doctor thinks that the CD4s are low related to all the steroids that I was given along with the Lemtrada. He's not sure but he's going to rerun the test again in January to see if they have increased.  

I'm doing much better now considering how bad I started out with this crazy disease. I feel extremely lucky to have been included in this study! My doctor did tell me he felt in the next couple of weeks Lemtrada should be approved by the FDA! Fingers crossed!! 

This is Emma- I was so happy she agreed to share her Lemtrada story. Many people contact me from around the world with questions or stories but few let me share their stories with you. This latest Lem Friend is an RN and perhaps she shares my desire to spread the good word and let as many people as possible know about what a GAME CHANGER Lemtrada can be!

I too have heard the FDA rumors and their decision is probably already made. We are just awaiting the release of the decision. I believe they are taking patient input this week based on what another Lem Friend has told me about testifying.

Wednesday, November 5, 2014

Reposting of Labs, week 28, T&B Subsets

It has been pointed out to me that the labs are not showing fully.

I am trying a new add in here. I hope this is available to all

Technology is not my strength!

Tuesday, November 4, 2014

Week 28 Labs finally posted

Sorry for the delay on these labs and updates.

Comments on the Labs:

My Complete Blood Count (CBC) is normal. This means I have the same chance of fighting off common infections as the rest of you- good luck this winter season :)

My Chemistry (CMP) is normal as is my Urine test. Meaning I am not at risk of GoodPastures disease (a 0.03% risk among Lemtrada treated patients).

Thyroid and Vitamin levels not checked per protocol.

Most Interesting- T&B Subset Panel
This is looking at my response to the recent Rituximab dosing. My body responded as expected and my CD19 level is back to 'undetectable'. Ritux kills the CD20 cell but until recently there was no CD20 lab test. There is now and I will have that drawn in future months. Depending on cost and insurance next year I may only monitor CD20.

I am MUCH improved overall since my April Lemtrada treatment and this recent Rituximab treatment has squashed any sensory symptom breakthrough. I have been away from the blog because I am going and doing so much more! This is a good thing but between work and play I use up all my daily hours, leaving little time for blogging and emailing :)

At this point we will continue to monitor CBC, CMP and CD20. When the CD20 rises again above 1% we will treat with Ritux. If you have MS and wondering if Ritux is right for you please ask your doctor. Most will NOT want to give this regimen together (although the Lemtrada is long out of my system). I will post more about why in a future blog. I believe in this combined dosing and know the risks so I am again choosing to be aggressive in my course against MS.

For a Primer on CBC and the Lymph subset see below. Someone recently had this question and I worked up a small explanation.

If you hit the Full Screen option you should be able to view all the labs. If the Subsets are not showing I have posted them to another page. Full Screen mode is easier to read if you can make that work here. 

Complete labs through week 24.xlsx

WBCs make up 1 of 4 blood components- RBC, plasma & platelets being the other 3.

WBCs are then divided into Lymphocytes, monocytes, neutrophils, basophils and eosinophils

See pic:

For MS we are interested in both total WBC count (aka Leukocytes) and more specifically the Lymphocyte level.

Lymphocytes can further be divided into T and B cells
CD3, 4, 8, etc are subgroups of lymphocytes, some are T and some are B, some are a combo

If you ascribe to the auto-immune philosophy of MS (the other main one being viral cause), you would want therapy to target your own immune system to 'shut it off, and reset' so that it stops attacking your brain and spinal cord. 

Lemtrada and Rituximab both do this. Lemtrada in a complete way- all Lymphocytes are killed and Rituximab in a targeted way, Only CD20 Lymphocytes are killed. 

Which is better? Is the combo the right answer? Right now science does not have enough data to answer these questions- Heck we don't even have a consensus about the cause of  MS (although I suspect it is autoimmune- hence my choice of therapy). Time will tell. 

Any questions? please send me an email or comment on the blog.