Wednesday, December 31, 2014

Pre-Lemtrada To Do List- Updated

Many people have emailed me questions about Lemtrada treatment as their US doctors begin to prescribe this therapy.

This is the first installment of 3 Overviews of Lemtrada Treatment starting with what needs to be checked in the weeks prior to Lemtrada treatment. I will post another on what medications to consider during the week of Lemtrada and follow with a Post-Lemtrada strategy.

This trio was devised after several direct email questions (any blog comments generate an email to me personally. In addition to posting the comment I also reply to the sender as appropriate). After I wrote several personalized versions of these guides I thought it would be helpful to post ones for everyone.

So if you have a question please comment below and I am happy to email you back or use your question as a blog topic. I am doing so well now that it hardly seems interesting to keep posting "Update- Doing Great" over and over!

Pre-Lemtrada Checklist

To be updated shortly with the items your doctor will likely check once Lem therapy has been decided on.

Happy New Year Everyone!

Vaccinations

Complete any needed vaccinations at least 6 weeks prior to treatment
If no history of exposure to Chicken Pox, consider Varicella Zoster Vaccine
Strongly consider flu vaccine in Fall prior to Lemtrada

General Pre-Testing

Blood Tests
Complete Blood Count with Differential (showing platelets)
Serum Creatine levels, Liver Function tests (both part of a basic or complete metabolic panel)
TSH- thyroid stimulating hormone

Lab Screening
Urinalysis with mycroscopy (to check for infection)

Excluding Tests
Pregnancy
HIV, Hep A, B & C, Tuberculosis
       All of these would be contraindications to treatment with Lemtrada
       See new post about why Lemtrada might be the BEST treatment did you want to become        
       pregnant


For Tysabri & Tecfidera Patients with a positive JCV antibody

MRI- to check for JCV  activation to PML
Lumbar Puncture- some doctors recommend this, others do not

Last Lab Posting- Vit D updated

My final labs of 2014 were drawn 12/30 and are posted below. I wont be posting future labs. I am going to stop the Lymph Subsets which I consider to be the most interesting part of the labs due to costs. I will update if anything unusual comes across.

I chose to switch to a new insurance in 2015 where more costs come out of my own pocket but I will have lower monthly premiums. MS is the costliest diagnosis in America and thus the highest cost to insure. So I am going to the 'bare minimum' labs to be a conscious consumer of healthcare.

All labs have returned except Vit D. This one is still pending. I will be interested to see if this rises. My levels have been normal but many MS patients shoot for a Vit D level well above the recommended minimum of 30- closer to the high of 100. My two recent Vit D level checks were 44 then 54. I supplement 10,000IU daily but this number can be stubborn to rise. Many years ago I was found to be conically low in Vit D, as are many Americans. It is thought this might be part of the parthenogenesis of MS- a contributing factor to the severity of the disease. Vit D is over the counter in the US but not in Europe. So supplementation is easy here. It is recommended to prevent bone problems among other health benefits.

No new surprises on this lab draw. My CD20 still remains undetectable and I have had no further problems with sensory symptoms since a Sept/Oct treatment of Rituximab.

The monitoring for the big 3 sequela from Lemtrada- Thyroid issues, ITP (clotting problem) and GoodPastures (kidney problem) all remain negative.

Vitamin D came back low again at 32. I am at a bit of a loss to explain this. I take 10,000 IU daily and never miss. This is a bit concerning and I will increase my daily consumption for the next 6 months.

Monday, December 15, 2014

Efficacy of Lemtrada- do people 'get it'? or "Take that Sucker"

Lemtrada has been approved in the US for 5 weeks now. More and more I am being asked by MS Patients around the world- "I know, but how are you really?"

The second dilemma many of them have is explaining this medication (and its 'complications' profile) to their friends and family.

To the first question- this is really how I am doing- Great!

The second question has stumped me.

Today I realized when speaking with a Dutch student (lives in Europe, this is an email conversation) that some of our friends and family may not understand the choice we face. Our caregivers will understand, other people with MS understand, but not many outside that group. I think I might have figured out why...

Its the MS they dont understand. MS is progressive. It gets worse and worse and worse. It does not improve, not over the long term. You take medication and it just seems to get worse at the same rate. Although they tell us we are 'winning'- it rarely feels like WE are winning. It feels like MS is winning- and that is just no fun at all!

Nor is it fair.

When you were young and try as you might you just weren't a good speller, or soccer player or pianist- you simply tried a new activity until you found the one that best suited you.

Well with MS you don't get to pick- we all get the one that SUCKS and this is the one we are stuck with- no do-overs, no 'changies', no rebates- there is no 'good' form of MS.

Ok so you have a disease. Lots of people get diseases- like thyroid disorder, diabetes, allergies. Ok, no problem- find the right doctor, find the best medicine, get the dosage dialed in right and Presto- no more Thyroid disorder, Diabetes or Allergies.. just stay on that medication for the rest of your life and keep checking in with that doc once a year and its all peachy. Don't worry if it goes haywire- you can try another medication and no real harm is done.

Sound about right?

Well, yes, for Those conditions- but not for MS. With MS while you are doing all you can- going to all the appointments, scans, blood work, therapy, taking your medications 100% right, reporting all your symptoms, rearranging your life for this disease- the damage is just piling up. Your myelin is being shredded, your axons are being destroyed, that occasional numbness is permanent, that muscle tick never goes away, you just don't have the energy anymore, and on and on and on.

You can be the nicest person, the best patient, win all the awards for attendance at all your appointments and the disease still takes part of you away every day. Whats worse- you know it, you feel and- and you feel pretty damn helpless.

Eventually you stop fighting so hard, get jaded but that doesn't really make a difference... MS doesn't care what you think about it- it just keeps on destroying your brain, everyday.

So as MS patients our options for treatment have been drastic and fraught with risks. Most all MS medications, except for 1 carry serious risks of long term issues with a suppressed immune system- cancer risks. But if we dont take these risks and these treatments we can pretty much kiss away small things like walking in your 40s...

So yes we will take medication that makes our hair fall out (interferons, Aubagio), gives us fevers and chills (many), causes caridac problems (Gilenya) can cause constant chronic irritated bowels (Tecfidera), medicines that can kill us with their side effects (Tec and Tysabri) and yes, medications that can case an increased risk for clotting disorders, thyroid troubles and kidney disease (Lemtrada).

But what real choice do we have, one- disability, two treatment

I am FIRMLY in camp #2

If you are in camp 2 you might as well go with the one that can actually halt the disease- I mean STOP MS, turn the tide on the damage- PREVENT, not just slow, the damage. Really then there is only one choice- and I would make it today- were I the successful 29 year old I was at diagnosis, I would chose Lemtrada again and again.

I chose it because I want to be walking in 10 years, in 20 years in 30 years and my only hope for that today is Lemtrada.

No, your family and your friends may not understand the choice you make. Their medications improve their diseases but until Lemtrada all the MS medications out there were only 'slowing our progression'.

Well that is just not good enough- tell me the side effects, I will deal with them, dont tell me you are taking ME away, basic things that make up who I am as a person, NO, MS you cannot have those things- you keep the wheelchair and I will take my Life Back!

Should I worry about Lemtrada side effects? possibly, but I fell confident I can deal with a 30% risk of thyroid troubles- what does that involve? seeing another white coated person once a year and taking one pill a day? One pill and that on pill normalizes the condition- and its an old, completely safe pill (thyroid treatment does not cause PML). Yeah, I think I can handle that.

Let potential side effects prevent me from Reversing the tide on my MS? - No way not in this lifetime!

Let the games Begin- MS 11 years, Emma 29- and counting!

And MS thought it could take ME on!

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.

Subsets:
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.

Lymphocytes
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:

http://multiple-sclerosis-research.blogspot.com/ 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!


https://drive.google.com/file/d/0BwhRwd1MVj3kLUNCX0JMN21tcE0/view?usp=sharing

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

http://www.docstoc.com/docs/document-preview.aspx?doc_id=172594900

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: http://www.nlm.nih.gov/medlineplus/ency/presentations/100151_1.htm

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.

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": 

https://www.youtube.com/watch?v=ZfP8ygGSMBc

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: 

https://www.youtube.com/watch?v=wzUWunCgBTM

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!

Monday, September 22, 2014

Week 24 Labs

My recent labs are now final.

Of note:

CD19 Recovery
On the last 2 months tests my CD19 cells are in the normal range. This represents B cell reconstitution. This is not a good or bad thing. B cells can be their own problem in MS and are treated in refractory cases with Rituximab when no other med will control symptoms.

Rituximab is also an add-on to Lemtrada that I am considering to stave off the autoimmune side effects (Thyroid disorder, ITP and Goodpastures). Rituximab would be given as an IV about every 4-6 months when the CD19% rises above 1%. I am not sure I am going to take this route.

Lymphocytes (WBCs)
Are recovering but still have not made a full recovery.

B12 & Vitamin D
Both are in the normal range. I take supplements to maintain these levels. My Vit D level is 54. Closer to 100 is better for MS patients so I will continue to supplement and monitor this. For B12 I get monthly injections to maintain this level.

Thyroid
Not preformed, due at next lab draw 10/17/14.

The labs are getting too large to embed here. If you want to see the whole chart go here:

Note: links to labs updated 3/28/16

If that doesn't work someone please let me know. I made it a 'non-public' document and I cannot tell if it will open for others.

Here below is my baseline, first month's labs and the last two lab results:

Baseline
2014



CMP
Mar 25
May 2
Aug 23
Sept 20
Normal Range
Glucose
70
86
82
92
65-99
mg/dL
BUN
16
17
19
29
7-25
mg/dL
Creatinine
0.94
0.96
1.09
1.26
.5-1.10
mg/dL
eGFR
76
74
63
53
> OR = 60
mL/min/1.73m2
B/Creatinine Ratio
n/a
n/a
74
23
6-22
(calc)
Sodium
139
138
138
135
135-146
mmol/L
Potassium
3.6
4.9
4.1
4.6
3.5-5.3
mmol/L
Chloride
106
106
103
10.4
98-110
mmol/L
Carbon Dioxide
25
23
25
22
19-30
mmol/L
Calcium
8.7
9.1
9.4
9.7
8.6-10.2
mmol/L
Protein, Total
5.7
6
6.6
6.9
6.1-8.1
g/dL
Albumin
3.7
4.2
4.2
4.3
3.6-5.1
g/dL
Globlulin
2
1.6
2.4
2.6
1.9-3.7
g/dL
Albumin/Globulin Ratio
1.9
2.3
1.8
1.7
1.0-2.5
(calc)
Bilirubin total
0.3
0.4
0.3
0.3
0.2-1.2
mg/dL
Alkaline Phosphatase
80
76
54
57
33-115
U/L
AST
15
15
16
19
10-30
U/L
ALT
13
12
20
21
6-29
U/L

CBC
Baseline
May 2
Aug 23
Sept 20
Normal Range
White Blood Cell Count
9.3
3.2
4.3
3.7
3.8-10.8
Thousnd/uL
Red Blood Cell Count
4.45
4.5
4.46
4.36
3.90-5.10
Million/uL
Hemoglobin
13.1
13.4
12.8
13.1
11.7-15.5
g/dL
Hematocrit
38.6
39.8
38.2
38.2
35-45
%
MCV
86.7
88.5
85.6
87.6
80-100
fL
MCH
29.3
29.7
28.7
30
27-33
pg
MCHC
33.8
33.5
33.5
34.3
32-36
g/dL
RDW
14.9
16.9
16
15.2
11-15
%
Platelet count
183
228
187
198
140-400
Thousnd/uL
Absolute Neutrophils
4957
2854
3032
2498
1500-7800
cells/uL
Absolute Lymphocytes
3357
112
525
673
850-3900
cells/uL
Absolute Monocytes
660
205
323
307
200-3900
cells/uL
Absolute Eosinophil
288
22
387
196
15-500
cells/uL
Absolute Basophils
37
6
34
26
0-200
cells/uL
Neutrophils
53.3
89.2
70.5
67.5

%
Lymphocytes
36.1
3.5
12.2
18.2

%
Monocytes
7.1
6.4
7.5
8.3

%
Eosinophils
3.1
0.7
9
5.3

%
Basophils
0.4
0.2
0.8
0.7

%








Thyroid
Baseline
May 2
Aug 23
Sept 20
Normal Range
TSH
1.45
0.95


.40-4.50
mU/L
Reflex to T4
n/a
n/a







T & B Subset
Baseline
May 8
Aug 23
Normal Range
% CD3 (Mature T Cells)

7
19
22
57-58
%
Absolute CD3+ cells

<20
103
114
840-3060
cells/uL
% CD4 (Helper Cells)

3
11
11
30-61
%
Absolute CD4+ cells

<20
59
59
490-1740
cells/uL
% CD8 (Suppressor T Cells)

3
9
10
12-42
%
Absolute CD8+ cells

<20
49
52
180-1170
cells/uL
Helper/Suppressor Ratio

1.1
1.21
1.13
.86-5.00

% CD19 (B Cells)

3
45
29
6-29
%
Absolute CD19+ cells

<20
241
153
110-660
cells/uL
Absolute Lymphocytes

138
542
524
850-3900
cells/uL






Vitamins
Baseline
May 2
Aug 23
Sept 20
Normal Range
B-12
939


721
200-1100

Folate
12.4


17.2
none

Vitamin D, 25-OH, total
44


54
30-100

Urine
Baseline
May 8
Aug 23
Sept 20
Normal Range
Glucose

Neg
Neg
Neg
65-99

Protein, Total

Neg
Neg
Neg
6.1-8.1