Last reply 3 years ago
My Lemtrada Experience

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!

Take care,
Emma

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us-emma
3 years ago

Forgot one impressive detail- at a neuro visit July 2014 my walking speed was found to have tripled! and I didn’t even realise it at the time!

Other major improvement was balance. I am now able to close my eyes in the shower and not fall over. I can even stand on one leg with my eyes closed and not fall. My stance is rock solid.

As many MS patients know this is huge- just to feel more stable on your own feet. Non-MSers might dismiss this but it is a really huge deal to me.

An active life without pain 12 years after being diagnosed. Who would have ever thought this is possible?! Not me!


us-emma
3 years ago

A followup response to another question about strength of therapy question might be of interest.

As I said I was in Tysabri for 6-7 year with 3 breaks. The first break was when the FDA pulled it. I restarted when it was re approved.

The other two haults were due to concern about my PML risk. Is really during this second hiatus from August 2011 to Dec 2012 when I was switched out to Gilenya, that my MS REALLY exacerbated.

My fatigue and pain skyrocketed. I stopped driving and had other vision problems. When I restarted Tysabri late Dec 2012 I never regained my previous function.

So my first hand experience is that Gilenya is a much weaker drug than Tysabri. Then after my Lem experience I was shocked to learn how ineffectual Tyasbri was to Lemtrada.

I don’t mean to say Tysabri was not great when it was the only thing out there but now we have a much stronger and effective medication based on clinical trial research and my own personal medical experience.

Take care,
Emma


jdeeley
3 years ago

Have they seen improvements on your MRI scans? Is it possible for the lesions to clear up?


us-emma
3 years ago

Yes, some patients have reported MRI improvement. What is more important is retinal scanning over time.

My only MRI lesion to remain is my initial one.

My Visual Evoked Potentials have improved quite dramatically. This is a less invasive and probably more accurate measurement of accumulation of MS damage.


Anonymous
3 years ago

VERY IMPRESSED that you can close your eyes in the shower! I fell out the shower door a couple of weeks ago. Very scary and lucky not to get hurt! I fell down the porch steps recently and dislocated a finger. Lucky there too since after getting past the initial shock, was able to pop it back into place. So balance would be HUGE QOL improvement for me! Equally impressed that you can stand on 1 leg. I cannot begin to do that any more and it reminds me that they had me hopping on 1 leg during tests for the tecfidera clinical trial a few years ago. I have really declined while on the oral DMTs. I hope others take note of that! Not holding a pity part either; but it is for informational purposes to share timelines. Looking forward to Lem. QOL issues reign in my world. MRI technology is interesting but not the final say as the CNS stealthily recovers “lost” functions once the immune system halts its assaults. Very good news that your evoked potentials improved dramatically. I assume you requested the test as I have no experience with that level of medical attention. 🙂


splick
3 years ago

Is this only for RRMS?

As I was diagnosed with PRMS but have all the same symptoms you speak about prior to the LEM…

I’m in a frustrated category. I was being prescribed nabilone. It reduced a lot of the pain, but made me into a zombie. I found myself driving under 50mph everywhere as I developed a huge fear of speed, which in turn, stopped me driving and living a life of pain, severe fatigue and loneliness.
It wasn’t worth the hassle, so I stopped but now struggle with the pain, which isn’t constant, but it suprises me when I least expect it….


Anonymous
3 years ago

@splick, lemtrada is officially for any relapsing form of MS which is huge for a whole class of people that were being treated as if they had no hope. You need to inform yourself thoroughly with this option as there is plenty of data and personal testimonies to give you hope. You sound a lot like me since pain is a chief complaint of mine. Pain and many other symptoms have been reversed by lemtrada according to many testimonials from the trials and patients that went offshore. I have been very assertive with my treatment options and put myself on the course to receive Lemtrada soon. I have been advised by many including a trial research investigator that Lemtrada is certainly worth trying and those with the most symptoms have sometimes recovered the most. I have been advised that most patients see a reduction or elimination of their symptom management drugs. I have no set expectations but know I must take this leg of my MS journey to have a shot at a better QOL.


Anonymous
3 years ago

@splick where in the world are you?
PRMS as in progressive relapsing MS? All MS is progressive some is just more aggressive with its progression from the start. Have you been on DMT’s previously?


us-emma
3 years ago

@jasfromtas,

This post might offer you more of my history you were asking about. I am always happy to answer any questions 🙂 I think that is why we become nurses- to educate 🙂

I was diagnosed in 2003 at age 29. I see that is your age now. My symptoms always leaned heavily towards sensory with pain being the worst. Cognitive and spasticity were 2 & 3.

We don’t rely on EDSS as much in the states. I think this because it focuses so much on lower limb function and that definition of MS has broadened over time.

My assessment of low quality of life prior to Lem is based on many things, but here is a list:
Inability to leave house- r/t pain, fatigue
Inability to drive- r/t fatigue & lack of eye accommodation to light
Going from active, sporty, travel full life to nearly none of those things.
Inability to perform ADLs (activity of daily living alone, bathing, drying hair, cooking for self, laundry, etc).

I did not realize how much my walking ability had slowed until it tripled on a timed walk test at the neuros office 3 months after Lem. The doc commented or I would not even be aware.

I now go about my day like a ‘normal person’ cooking, cleaning, working, driving, doing for myself and I am simply amazed by it every day.

You asked about inflammatory disease. I was having approx 1 MRI/ year that I was told ‘showed nothing new’. I began to either think it was not true- bc I was getting worse, or the test was not that accurate.

I had over 10 lesions when diagnosed at another facility (in patient) but those were never mentioned since. I did ask my neuro in Dec 2014 to reexamine & compare. He told me I had one lesion, but it was ‘the same one I always had’ so what happened to the 9??

Clearly I progressed, then improved after Lemtrada. So I don’t know what to say about MRI. My evoked potentials (simple retinal scan done in office) had been taken about 5 years ago & had improved. Maybe they are more sensitive.

I would say based on your age you would be SPMS if you are having any recovery or stabilization between downturns. I thought I was bridging to SPMS when I went for Lem just based on low QOL & progressive slippage. But I dared not mention my fears to any doc to jeopardize my Lem approval.

Here is an article that light be of interest to you in case you can get a second opinion from the doc mentioned:

http://www.news.com.au/lifestyle/health/lemtrada-the-ms-treatment-thats-changing-lives-now-available-on-the-pbs/story-fneuzlbd-1227279979872

I hope that helps some. Please PM me (we are already friends) or post here if you have more questions.


us-emma
3 years ago

@jasfromtas

So sorry, meant to say you are NOT SPMS, not the opposite!

I think you are likely still in the relapsing phase. Even if you are on the cusp, a 60 year old woman went to the UK for Lem in May 2014 (her story is also on the blog Lemtrada.blogspot.com) and she is improving.

Progressive patients have seen modest improvements on Lem but it takes them more time (up to 3 years after first dose) and result are not as dramatic. But any gains against what MS takes from you is worth it in my book!

Take care,
Em


us-emma
3 years ago

@splick,

Please see above about Lemtrada and progressive disease.

I am confused about the use of Nabilone. That is a cannabinoid (marijuana) derivative and not a primary treatment for MS. It was developed for severe nausea related to cancer that didn’t respond to other anti nausea drugs, although it has been used off label for MS pain.

This might explain why you are so loopy on the drug.

If you are in the US Lemtrada should be an option because it is not excluded based on MS type, just have to have failed 2 other MS meds (either by relapse or side effect).

If you are in another country then it would depend on the guidelines there.


kevv
3 years ago

Hi Anna,
I have a similar situation to yours, having just completed my 89th Tysabri infusion while being JCV+. I’m leaning towards Lemtrada (Gilenya is my other option) and after reading this thread, I saw you suffered from cognitive issues as well as physical. Since most of my problems relate to memory and concentration, I’d like to hear if that’s improved at all with Lemtrada.

I do physical therapy for this with a speech pathologist and try to keep my brain active, and I also exercise regularly…these help a bit, but not enough to make me feel sharp again. Anyone with any experiences with cognitive decline that’s gotten better, and I’d LOVE to hear what you did! I know I specifically asked you, Anna, about Lemtrada, but I’d also like to hear from others if possible.
Thanks!


Anonymous
3 years ago

I think @kevv means you @us-emma. In high demand! 🙂 Kevv, Be careful that your cognitive and memory problems are not exaggerated by symptom management medication. I know many of the drugs have that effect on me. That is one characterization that I saw lemtrada treated patients mentioned. They were able to reduce their symptom management drugs as their symptoms improved. That alone would reduce many MS like symptoms.


kevv
3 years ago

Oops! Sorry Emma!! Guess the synapses ain’t what they used to be…


us-emma
3 years ago

@kevv,

Dont ever apologize for a cognitive mistake- at least to me- I knew who you meant right away and am Your question prompted me to write a blog post about this issue. The full post can be found here:

http://lemtrada.blogspot.com/2015/04/cognitive-improvements-yes-thats.html

Here is the last part of that post that answers your question:

Against all odds- this symptom started to improve with time!

Again, this is a symptom I never thought could improve. It struck me early and so had been present and worsening for at least 7 years by the time I was given Lemtrada.

The first thing I noticed was work- I started to retain those numbers between the calculator and the spreadsheet. At first I thought it was just ‘a good day’ but then this started to feel more permanent.

Then I began to attempt ‘math in my head’ and as I challenged myself I was able to do this too- although it took me a long time to trust myself (for business purposes I could not afford mistakes). But soon the checking and double checking receded and I gained confidence in my ability with numbers.

For the fall TV & Sports line up- I had a plan. I was going to keep all my ‘favorite shows’ on my DVR so when a new episode came out I could watch the previous ones to remind myself. When it got around to fall (Lem infusion was April 2014) I found I didn’t need my plan! I started to remember details!

I have even contemplated re-training as a Nurse Practitioner although my home job is quite cushy- but the point is- I feel ABLE to do so!

Cognitive improvement really affects your whole life. I feel more confident, happy and ‘settled’ in social conversations and business life. I am building new memories and now even able to remember more than my husband in many occasions. I think this is due to the many ‘tricks’ I developed over this period to help me through.

I am unsure if I will regain the memories I was unable to store for those 7 years. I suspect not, but who knows really. If this was a problem of laying down new memories all those years the opportunity to store them may be lost- but the future is so bright! I would say I have to wear shades- but due to Lemtrada my pupils are now constricting for the first time in 15 years 🙂

I am forever thankful to the German people (Dr. Ziemssen & nurse Teresa in particular, the research scientists and medical funding to bring this amazing treatment to life for MS patients world wide. So far I have not found one area of my life that Lemtrada has not made some significant improvement.


us-emma
3 years ago

Question I received on another thread: “I mean symptoms of MS. Do they come back? Probably a silly question!”

Thought this might be interesting to some in light of recent data published on the Barts Blog- see citation at the end. Here is the reply:

No at all, just one we don’t have a complete answer to.

We have data as fat back as 16 years. Not all who were treated this far back have remained in follow up (or aka ‘extension trials’). Ten year data shows that approx 50% of those treated 10 years ago with the initial two doses have not needed any additional meds and their MS disease remains in remission.

At year 7 about 50% get a third dose.

When and if you need additional doses depends on your personal response- meaning if you have a relapse you get another 3 days of Lemtrada.

But research show that on average dose #3 is not needed for many years. Leaving you free to live a normal life, no meds, have children without worring about side effects of MS drugs, etc.

As time passes, more ppl will use Lemtrada and we will increase our knowledge around the parameters of retreatment. We will also continue to get long term data from those who remain in the extension trials.

This is great news. The better news for the individual is that Lem will be there when you need it, on the schedule you need it.

I will repost this in another place for others to see.

Thanks for your questions 🙂

My summation oh UK 15 year follow up data presented mid year 1014: http://lemtrada.blogspot.com/2014/09/recent-longterm-uk-research.html

For the full breakdown of recent data on the topic see:

http://multiple-sclerosis-research.blogspot.com/2015/04/aan-2015-alemtuzumab-retreatment-rates.html


jasfromtas
3 years ago

Know this is a long post – but figured that there will be a wealth of knowledge / experience here-in.
Wondering about the switching protocol from people going form one DMD (eg, Gilenya) to Lemtrada? Do you need to have a washout and how long was it for?
Cheers
Jas


Anonymous
3 years ago

@jasfromtas I washed out of Gilenya for about 1 month just based on previous experience. I was never told to although it was appreciated as being the right thing to do. Another patient that had Lem with me said his neuro had him quit gilenya for a month prior to lem. I have never seen any definitive instruction as to a wash out period. Just my own opinion, what’s the down side of not washing out? Lem is going yo blow up your existing immune system, so what’s the problem? If you wash out of your current DMD, you could suffer a relapse as I found out the hard way when washing out of Tysabti to start Gilenya. Gilenya was delayed and I had my worst relapse ever after 6 weeks of no treatment. I would be sure next time to know that the replacement DMD will be available before a relapse can occur.I would err on the side of a shorter rather than a longer wash out period.

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