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!


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
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        

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!