Last reply 3 years ago
Lemtrada vs Tysabri

Hello all

First of all I’ve recently joined Shift MS and would like to say that this site is awesome and has been a great resource for myself and my wife.

My wife was diagnosed with Balo Concentric Sclerosis in November 2014, this is known to be a rare and agressive form of MS (100 documented cases globally)

We visited Kings College Hospital in London uk today, we met with Dr *** ****** whom, by his own admission is a straight talking chap.

He has asked that we consider two treatments:
1) Tysabri
2) Lemtrada

I’ve read about Tysabri and only recently learned about Lemtrada via the comments here on Shift MS.

We have a huge decision to make so would really appreciate views for the community on the benefits, risk and real time experience of each treatment.

Any and all in put would be welcome.

Thank you in advance

G

PS Name removed to protect privacy. Admin 😉

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stumbler
3 years ago

@glenr , you need to read this article, by the well-respected MS experts at Barts in London:-

http://multiple-sclerosis-research.blogspot.com/2014/08/clinicspeak-natalizumab-or-alemtuzumab.html


glenr
3 years ago

@stumbler thanks again for your help…I must admit that then jargon used is mind boggling ! … Efficacy NEDA ? .. I think that Lemtrada looks to be less risky and as effective as Tysabri ? Perhaps I’m not educated enough to make an informed choice ! …. So confusing…. ‘


stumbler
3 years ago

Efficacy – how well it works; and
NEDA – No Evidence of Disease Activity.

It is a minefield. But, you keep asking the questions and we’ll try and keep answering.

We have some members who have either had Lemtrada, or want to have it. The dear old NHS have been a bit slow in adopting this new treatment.

We also have a lot of members, who are on Tysabri.

So, hopefully, you will get some opinions from both camps. Both treatments seem the best for efficacy! lol 😆


us-emma
3 years ago

I have taken both.

Lemtrada is as close to a cure as we have. Lem works by completely lysing (breaking apart) the patient’s circulating WBCs (white blood cells). So there are no WBCs around to cross the BBB (blood brain barrier) to attack the CNS (central nervous system aka- brain and spinal cord).

The medicine is given for 5 day only. After those 5 days no WBCs are left but the med does not affect the body’s ability to regrown those cells- it just takes months. So the immediate effect is that all harmful inflammation stops by about day 3. The body is no longer attacking itself.

Damage to the brain halts completely and some repair is able to be made by the body.

Over the next 12 months the body does rebuild the WBCs and their ‘subsets’. At the 12 month mark the patient is given 3 additional days of treatment (so you are on no medication between the first and second dose 1 year later.

No more doses are needed unless the patient begins to experience MS symptoms. This medication works best in the newly diagnosed. If a third dose is needed- 3 days are again administered. This is usually not needed for at least 2 years after the dose given at 12mo.

Tysabri is the second best drug for MS- based on efficacy. Ty works by blocking WBC from crossing the BBB (blood brain barrier) some WBCs do get through and some people respond better to Ty than others but it is not the long term solution that Lemtrada is.

Ty is an IV treatment given once a month. You have to keep up the once a month dosing until the drug is no longer safe for you. Please let me know if you need information about the brain infection called PML that some people are susceptible to while taking Tysabri. This brain infection is deadly serious- killing the patient in 30-40% of cases and those for whom it is not fatal experience significant brain damage.

I do not say that to scare you. I was on Ty for 6-7 years and I knew I was at high risk the whole time but nothing else was available at the time that came close to the efficacy of Ty. So I stuck with it until my doctor just deemed my risk so high an infection with PML was going to happen.

This was when I sought out Lemtrada. I live in the US. It was not approved here until Nov 2014- but my crisis moment with Ty came in February 2014. So I found a doctor in Germany who was willing to take my case and flew there for my 5 days of treatment.

This was money well spent- I have almost no signs of MS at all- after 11.5 years of being diagnosed. This is incredible to me. I wish I was given the drug when I was diagnosed at age 29 but still very grateful for getting my life back at age 40.

I blogged about my experience at lemtrada.blogspot.com I started this blog to let my family know what was happening but as things started to improve dramatically my mission in life became about sharing the news of what this drug could do for MS patients.

I have lit many fires and keep sharing my story- so that those especially like your wife- newly diagnosed with a very aggressive case- can find their way to this life changing drug.

For the patients a few years older than me this drug does not work as well- the niche is early in disease and frankly I am lucky to be doing so well. I hate to hear that people are waiting to treat their disease- MS does not wait while it chews through your brain…

Thats just the way it is- MS is aggressive, we need to be more so!

if you have ANY questions I am happy to answer. I know this long post is probably more than you bargained for but I hope it helps to inform you about your wife’s choices.

Many Blessings for a positive future!
Emma


us-emma
3 years ago

both drugs have other effects that can happen either at the time of infusion (called literally ‘infusion reactions’) once you sail through the infusion those effects are gone until your next dose-

With Lem that would be 12mo later
With Ty that would be 1 months later in perpetuity

You are pre-medicated to avoid the infusion reactions but some people experience some or a little more- mostly rashes and body aches. I experience no side effects and this is the most typical response if properly pre-medicated (your doctor is well aware of how to make this safe for you so dont worry).

Long Term effects of Lemtrada consist of thyroid troubles (easy to diagnose and treat), a 2-3% chance of a reversible bleeding disorder called ITP requiring some intervention but usually no long term medication- it resolves on its own in most cases. and 0.3% chance of a kidney disease- very rare.

Tysabri’s main long term ill effect is PML- mentioned above

So in my opinion, I feel more comfortable with Lem’s side effect profile than either that of untreated MS or Tysabri- and Lem works better.

Ok I will seriously stop typing and go to bed- it is 1:30am here 🙂

Take care,
Emma

feel free to read through the blog- might help to go back to the beginning. I wrote it as I went though it. If you have any questions while reading it post a comment at the bottom. This sends me an email directly and I will always email you back to answer your question.


glenr
3 years ago

@us-emma – thanks very much for the insights into your experience of treatments and for staying up so late


us-emma
3 years ago

When do you have to make your decision?

Sending well wishes to your wife 🙂

Emma

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