It's the little things...

So yesterday I went to see my eye doctor for an eye exam.  I have been doing this fairly regularly over the last few months since I had some issues with my vision.  The last time I went in before Lemtrada I had vision issues in my left eye and the visual field test that she ran came back with some degraded vision in the visual field.  The results of yesterday's test was that it had dramatically improved to normal in my right eye and a very slight bit off in the left eye.  It's remarkable how it's improved in such a short time.  I notice things are no longer blurry in my left eye when I read text. We also had our AC Unit go out on us this week for a few days.  Our house was 84 degrees on the inside and I was able to tolerate it.  Before Lemtrada I would have had to leave completely.

More things

I've noticed that my energy levels have gone way up.  I also noticed that my gait is a lot better and my heat tolerance has improved significantly.  I am excited to see what the future holds. This is the best I've felt in a long time.

Thoughts on what i'm noticing 1 week post lemtrada

My ataxia has improved before I could only close my eyes while standing for 1-2 seconds before I start to lose my balance. I have a lot more energy and my pain levels have decreased significantly.  I also noticed that my spasticity is gone as well.  Kind of surprising for just one week after the treatment.

Medications taken with Lemtrada

Just a brief listing of what I've had to take and currently taking.  Some of it was given during the actual infusion, some of it I've had to take before and now after the infusion.

• Acyclovir - Herpes Anti-viral taken twice a day started this before I was infused and will have to keep taking this for a while.

• Ranitidine  - This is the generic name for Zantac, used to combat upset stomach when taking Lemtrada

• Hydroxyzine - This is in the same family of drugs as Zyrtec (anti-histamine), helps to combat rashes and itching associated with the Lemtrada.

• Benadryl (IV) - Another anti-histamine.  Also helped with rashes during the infusions.

• Solu-Medrol (IV) - Steroids given during the first 3 days of the infusion (can vary by infusion site may be given more than 3 times depending on reactions).  Helps to keep the reactions to the Lemtrada to a minimum.

The paperwork involved with Lemtrada

As you can imagine a drug such as this is heavily restricted in our health care system.   Never mind the fact that it's been given overseas for much longer.  Please keep in mind that some of this is still fluid and keeps changing (another frustration).  Here is how it went for me:

• Early November 2014 - Filled out initial paperwork at Neurologist's office during my visit
• November - Also enrolled in MS one to One.  This is Genzyme's patient services program. They are pretty good to deal with but they are still working out a lot of the kinks.  I was a good test case for them, more on that later.
• November - Early May 2015 - Lots of waiting and frustration.  My area's supposed first infusion site was not going to be able to see me until Mid July!!  I was not happy so I contacted my Neurologist and he found me another infusion site in a different part of the state.  If it wasn't for him i'd still be waiting on this treatment.
• May - June 1st - Waiting and a lot of snafus and paperwork, dealing with insurance company, neurologist office, infusion site and drug company.  It was an incredibly stressful time that I will detail in another post.

Managing recovery

It looks like most of this coming week will be spent resting and sleeping.  This treatment packs quite a punch a bit more than I had originally anticipated.  It was still well worth doing.  If you're an MS patient you understand that you'll do what it takes to slow down the progression of this terrible disease.  I do feel better overall compared to before the treatment.  It's just going to take some time to recover.

Fever....

Not much of a chance to post today I've been dealing with a fever from the Lemtrada.  The fever broke.   Fever like this brings serious fatigue and weakness so I will post more about this later when i'm doing better.

Timeline for my Lemtrada treatment

Here is a brief synopsis of the timeline that I had to get this drug.

• November 2014 - Stopped taking Tysabri put on Tecfidera as a stop gap, Lemtrada had just gotten approval the Friday before my meeting with my neurologist.

• From November 2014 until the end of May 2015 - waiting for the drug to go through a heavily restricted process mandated by the FDA called REMS and taking tecfidera the whole time which was not much fun.

• June 1st - June 5th 2015 - Finally received my Lemtrada treatment

I will go into more details as to some of the insanity that I had to deal with to finally receive treatment.

What is Lemtrada and why this may be a good choice for some patients?

Lemtrada is a drug that was originally called Alemtuzumab used to treat Leukemia.  It has been around since the 80s.  It was recently re-branded as Lemtrada and is now being used for MS.  The drug company Genzyme was bought out by the french pharma company Sanofi because of this drug. Part of this has to do with the re-brand and $100,000 cost of the treatment itself.  MS drugs are notoriously expensive and this one is no exception.  The criteria for prescription is that you have had to have failed 2 MS therapies already, I qualified on this count by failing Avonex, Tysabri and Tecfidera over the last 11 years.  As with any of these MS drugs the side effects can be a bit unsettling to read about.  Please read about them here.  Why is it worth the risk for Lemtrada?  For me it was because my MS was progressing and I did not like losing my quality of life.  MS is constantly ongoing and it does not stop so not getting any treatment does not seem like a great option. What appealed to me about Lemtrada was how effective it was supposed to be and that the treatment is given over 5 days as an IV infusion.  You then are good for a year and then return the 2nd year for a treatment of 3 infusions over 3 days.  About 80% of patients after this do not have to come back again based on the clinical data, the other 20% come back for a 3rd round of 3 treatments.  No more pills, shots or monthly infusions!  Don't get too excited yet there are a lot of hoops that you will end up jumping through for this drug that I will get into great detail soon.

Background

I'd like to start with some background on myself and my MS.  I am a 38 year old Male ms patient originally diagnosed in January of 2004.  I have most likely had it since the late 90s.  I experienced my first symptoms in 1999 when I had a lazy eye.  I went to a neurologist and ended up doing a cat scan and got a prism put over my left eye glasses area to correct it.  I thought that was it but over the next 4 years more symptoms would begin to manifest.  I had a lot of heat tolerance and gait issues over this time.  Then in January of 2003 I fell and broke my ankle on both sides on my left leg.  I ended up not going in medical care so it healed wrong.  I had to have surgery to re-break the ankle and reset the healing time back another 3 months.  After a total of 6 months I still was not able to walk.  It went on for over a year and finally I saw a doctor who found a tremor in my foot and she sent me to a neurologist.  He immediately narrowed it down to 2 diagnoses.  A brain tumor or MS.  I was admitted into the hospital and got an MRI.  Sure enough they found lesions in my brain that confirmed the MS diagnosis.  I ended up getting 5 days of IV steroids and then spent a month with in patient physical therapy.  After relearning how to walk I started on a walker.  I then graduated to a cane. My first neurologist was a firm believer in treating the disease aggressively and I have taken that philosophy to heart.   My first MS drug was Avonex and I took this for a couple of years.  It was not very effective and had the flu like symptoms which is common to interferons.  I then finally was able to get on Tysabri and this got me off from disability and to work full time again.  I ended up taking this for 7 years until it stopped being effective.  During this time I had a PML scare and had to sweat out the weekend waiting for an MRI to see if it was this diagnosis or not.  Luckily it was not and I got IV steroids again for a relapse and then started on Tecfidera as a stop gap medication until I was to be taking Lemtrada.  This was the start of a very interesting journey that I will detail later.

Welcome to my US Lemtrada experience coming from a male ms patient perspective having received treatment through the US health care system.

I am writing this blog to better inform prospective ms patients and their families about the entire process.  There are a few good blogs out there but they are not written from a male perspective and the treatment was given outside of the United States.  I will try to be as detailed as possible and please feel free to ask any questions via email or comment.

My email: uslemtrada@gmail.com