Many people have asked about my lemtrada story and I have answered many questions. Today I wrote a synopsis of my story on another thread here. I am reposting it because so many people still have questions about Lemtrada- or might even be unaware of the Lemtrada option.
Here is that reposting of that. My hope is that it is helpful to someone and another person seeks out effecive treatment against this terrible disease.
My experience with Lemtrada can be found at Lemtrada.blogspot.com going back to March 2014.
Here is an overview. I was diagnosed in 2003 by Jan 2014 I had resigned from my primary job as a Nurse Practitioner (similar to a doctor but only seeing patients in clinic not hospital) treating adults with HIV. I resigned because MS started affecting my memory and I was concerned I would made a medication error in prescribing or miss something else important.
I went into HIV clinical trial research but after 1 year I could not keep up the pace due to fatigue and had to resign that job. I went into clinic administration but the travel was too much, etc This goes on, but now I work from home as a dental secretary processing insurance claims- a far cry from the medical career I had planned for myself.
I had always been very agressive in my treatment of MS with available therapy. I was on due therapy as early as 2004 and when Tysabri first came out I was on dual therapy with Avonex until the FDA pull the drug due to PML. When it was re-released 2 years later I was back on it as mono therapy.
I had always been JCV+, putting me at risk for PML. I knew this from the start but still wanted to be aggressive. When the titer became available I took that test and it was high. In Jan 2014 the titer was so high that my risk for PNL was greater than 1 in 50.
My doc refused to allow me to continue with Tysabri. I was crushed. I knew this was the strongest medicine out there against the disease. Just 2 months earlier the FDA had denied approval of Lemtrada. Now my doctor was out with his wife in ICU and I had no meds to fight MS.
A brief discussion of how I was doing in Jan 2014:
Pain: I am not a whimp when it comes to pain but my pain and muscle stiffness was so high I was on 4 muscle relaxers, both narcotic and non-narcotic pain meds and many drugs to tamp down my nervous system.
Fatigue: I could not drive, walk though a store, could not do dishes, cook, laundry, bathe alone, blow dry my own hair or leave the house except in extreme cases of necessity.
Mental Confusion: I could not remember plots to books, tv shows, how to do basic functions of my job without writing everything down. I could not remember which roads got you to your destination, etc.
Vision- I could not see at night or on very bright days. I wore sunglasses all the time.
This is not a pity party, just wanted you to know where I was.
So when Ty was no longer an option and neither was seeing my neurologist *out with sick wife) I took matters into my own hands. I did my research on lemtrada. I thought it might be as strong as Ty- and clearly I was getting worse on Ty.
Lemtrada by that time had been approved most places around the world- Most Euro countries, UK, Australia, Mexico, Canada- but many were not infusing yet or the drug was not available in country yet. Mexico and Canada were the logical course but Mexico was clueless and Canada refused to infused cash paying Americans because they feared lawsuits.
So I took my case to Euro countries. I found several doctors in Czech Republic and Germany who would infuse (France and UK were not yet infusing). One of the German doctors agreed to speak with me on the phone and due to my medical background and knowledge of the drugs effects, agreed to provide me with Lem as a cash paying patient.
I am forever grateful to the entire German people for this.
The week of Lem was easy as was the travel home (which I was worried about after just wiping out my immune system). About 2 weeks later I started to feel like absolute crap. I thought I had contracted the plague. I knew my immune system was wiped out so it couldnt mount an attack. I was tired beyond belief and didnt know what was going on.
After talking with several other patients who also went abroad we figured out it was just what happens after lem and started calling it Lem fatigue. Basically what is happening is that your body is going into overdrive to replace all the blood cells killed off by Lem. The best analogy would be how you might feel tired during pregnancy as the body is making cells for the baby but in overdrive.
The fatigue was different from MS fatigue. It came on hard in the AM and as the weeks went on it started to get better towards the afternoons and slowly went away. At 12 weeks post Lem it was completely gone.
Now the best part- I started IMPROVING- first thing I noticed was the fatigue lifting. Then I was moving so much easier and I needed far fewer muscle relaxers. i stopped needing any pain med at all. My eye sight improved and I could see at night. With fatigue and eye sight better I could now start driving again- and having energy to do whatever I drove to.
The improvements keep coming and now I feel like I dont have any MS symptoms at all.
To go from contemplating an application for disability to traveling, walking up steep hills and swimming with sea turtles- all the improvements have simply been amazing. Beyond what I ever could have believed would have happened to me.
All the details for this are on the blog- written as they happened. Now I clean the house, make my own meals, do laundry, do all my own self care.
Then started my ‘war path’ to get on every site I could (but now just shift really) to help people understand this therapy and what an amazing blessing it has been for me.
I am so happy to hear of every new person to get Lem or get approved for Lem- I hear their MS symptoms and KNOW things will get better for them with Lem and time, Lem and time…
The real headline here is that MS just doesnt get better, not prior to Lem, MS is progressive, terrible and unfair. Now we have a way to fight back and start WINNING battles against this disease.
Lem was finally approved in the US in Nov 2014 but our FDA is requiring so many hoops that few patients here have been infused but the numbers are certainly growing. So my mission has changed a bit from advocate to support system for any patient that asks.
Best wishes to you in your journey against this horrible disease. I wish for you effective treatment and a normal life!
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