emzi 07/03/15
Last reply 3 years ago
Lemtrada Capabilities

Does lemtrada have the capability to stop MS in it’s tracks forever? Is it because there is no outcome yet for more than 10 years that they cannot say this is the case?

Is lemtrada capable of keeping someone in relapsing-remitting period for the rest of their life? If it say was to last 10 years at a time .. Could another dose be issued each time?

Interested in peoples views.

🙂

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us-emma
3 years ago

Forever is a long time…

We do have longer term Lem data (see http://lemtrada.blogspot.com/2014/09/recent-longterm-uk-research.html) posted back in Sept this isn’t so ‘recent’ anymore but does give some data out 15 years.

What we know so far:

MSers treated early with Lem is an ‘almost cure’.

Less than half of patients will need a 3rd dose

If a third dose is needed it is usually in patients with more advanced disease prior to initial Lem tmt

Dose 3 if needed is usually needed 2 years after dose 2.

Subsequent doses can be given, conventional wisdom is to put them at least 12 months apart.

Tmt with Lem does not preclude tmt with another DMT

Doses after #2 are usually given based on patients symptomology or a relapse.

Hope that helps 🙂


Anonymous
3 years ago

US-Emma,

I am headed back home next week to get Lemtrada. I assume that they will be certified in March, as original apptmt was Feb which was cancelled. Please try to clear me up on something as I have been fighting mightily for 2 years for the opportunity to take Lemtrada. I know that we both were DX’d about the same time till trtmt. which is almost outside the window typically given as too late and was repeated again in the entry that you referenced Beth. Beth is a few years older than I, but according to your reference apparently benefitted from treatment. I have taken the most aggressive treatments since DX and you said that you did as well. Do you know what types of DMDs Beth took prior to Lemtrada and for how long since DX and before Lemtrada? I think that being on an aggressive DMD since DX and before Lemtrada might explain why patients recover more fully after Lemtrada than is suggested by early clinical trial data where patients id’d as SPMS might not have been treated aggressively for 10 years prior to Lemtrada trtmt.

Also, I can still walk unassisted but I am terribly weak. I spend almost all of my time sitting or lying down and have suffered seriously from neuropathy for more than a few months. I also have vision problems (light sensitivity) and other bodily function issues that shall go unnamed here; and cannot work as a result of the aggregate of these problems. Given your near total recovery reported, could you or Beth ever identify with the types and level of disability that I have experienced and should I hope to recover thereby asking the million $ question of risk vs. reward. I am prepared to take the risk for an outside chance to recover even partially from my current state. I am particularly interested in Beth’s and your opinions because of your backgrounds as medical professionals. It is compelling to me that at least 3 medical professionals with MS chose to take some risks and even pay out of pocket; and I am trying to determine the rewards that you both hoped for and experienced vs. what I might could hope for and experience. The 3rd professional is a friend in the clinical trial that has confirmed similar symptoms that were helped by Lemtrada, but still requires MSCONTIN to control her pain and remains unable to resume her medical career. I am not looking for professional opinions, only your personal experiences. Thanks for sharing!


Anonymous
3 years ago

Corrected reference to alert @us-emma to previous entry that solicited a response from her.


us-emma
3 years ago

I understand what you are asking and the position from which you ask it- essentially “what will Lem do for me, what can I hope for?”

There are many emotions in those questions, some fear, some hope, some concern is the journey worth the ending?

The best thing i can say is that hope and optimism are the strongest things we have within us, compelling us forward, the reason we never stop in our search to take back from MS all that she has taken from us.

I am so very glad to hear your news of having an infusion date. I remember the mixed emotions I had about that- the main one being, am I really going to do this? Am I crazy? Fly to Germany, completely obliterate my immune system, drain my bank account and then take an international flight home with no way to fight off a possible infection…

I know this is not the answer you seek but I think it is the greater point- we have faith that we have a good shot (for the first time in history) to gain some ground back from MS.

How much ground? In what way? In what time frame? None of us can be sure of this- especially those of us further out in our disease.

Knowing you only here on shift, I felt very early on that you were my “MS Sister” maybe even my twin in many respects.

With Lem I was only looking for “the next best thing” when Ty was no longer an option for me. I had read the research about modest improvements but really thought those were too much to hope for, honestly I just wanted to continue to be able to live in my home, home bound really- I was not asking for improvements in function, energy, eyesight, or ability. I was not asking to be out of daily pain.

I think the pain was the worst for me- so many types. I often said “pain changes your personality” but of course it is more broad than even that.

No one can really know what Lem will do for you at 11+ years diagnosed but I would place a solid bet that you will benefit.

I don’t think Beth is the best analogy, but probably Ava. She had been diagnosed nearly 20 years and had received treatment for only a small portion of that time. She was not mobile in Germany- she used hand crutches but mostly wheelchairs. She had lost most of her hope and all of her energy. Her two beautiful young daughters seemed to be all that was propelling her forward. I was very worried for her.

I spoke with her around Christmas. She and her husband turned their basement into and exercise room and were in the process if putting in an infinity pool- all for her new level of activity! She looks and sounds so happy! She is a new person, or perhaps a restored person.

Prepare for the week of Lem, the Lem fatigue and then let your body restore itself.

I think the hardest thing for me was pushing myself to go beyond what had become my boundaries. Over time MS is a powerful teacher- do too much and you will pay in some painful way. So you learn to limit yourself or pay the piper

Allowing myself to challenge those boundaries was hard, and sometimes I still do too much, but just the fact that you can challenge MS is incredibly empowering and feels like true success. Some ways are small, but others are huge, and we will always be thankful for each one of them.

I haven’t said this to too many people but I am in Hawaii and the island attitude of going with the flow, slowing down and allowing the world to be as you find it has been a beautiful lesson to experience. Where ever you find that sense of “allowing” (meditation, prayer, song, church, books, waterfalls- wherever) engage that and flow though this period.

Don’t fight your recovery but allow it to happen (get rest, treat your body well, find peace) and you will end up right where you are meant to be.

This all is a little metaphysical, but more true to me than all the facts and stats. Those are more useful for people in the deciding stage, you are in the action phase. Be kind to yourself, will yourself through the next few months with calmness and care.

You know the possibilities (improvements still being realized years and years post your first treatment). Just let that happen for you.

It will.

You are prepared for the risk, be ready for the reward 🙂

Ps- apologies to @emzi, msbrsinc and I have a bad habit of hijacking other peoples feeds here, We did not mean to get off topic of your original questions.


Anonymous
3 years ago

@us-emma, Thanks so much for your very thoughtful message! I did not expect that, and read it over again just now as my internet went down this pm. Not being much of a metaphysical person, I respect other people’s beliefs. If it saw you through your battle with MS, then more power to you! I have been in a bad place with seemingly never ending pain. It’s the main reason I write to try and warn the younger patients how nasty MS can be. I reached out to you as a final sanity check with the best candidate I know to confirm that I am not making a mistake in a couple of weeks. My friend Lisa who is the RN in the clinical trial from Tenn says I have nothing to lose and is certain I will benefit. She has a son with HIV and has a lot of perspective. She is preparing for her sixth treatment in addition to adding abaugio. Her doc is a research investigator and says she is one of a kind and anyone can benefit when she asked about me. He did not use to believe that. Something has changed his mind about Lemtrada and the progression of MS. The published data contradicts that and makes it confusing to sort fact from fiction. My logical mind tells me Lemtrada is the ticket. At least the best ticket for now. The pharmas are hot on the trail of neural protective drugs.

EVERYTHING is so hard for me now and my thinking is not clear. I have always been a risk taker which I probably owe to MS. I wish we were twins. I would love being your age again! I sense euphoria dripping off the words in your entries as I know you have been making up for lost time. I am so glad for you! Have a BIG time! Thanks again for your encouragement and also your devotion to spreading the word about Lem.


Anonymous
3 years ago

@us-emma, Everything OK? Long time, no hear!


us-emma
3 years ago

Just very busy 🙂

Everything going well here- how are you?


Anonymous
3 years ago

@us-emma, Would love to say I was busy. Still waiting for infusion center certification apparently. Told them to reschedule. It’s a struggle! Hope you are continuing to be well if not better!


us-emma
3 years ago

@emzi,

Has your boyfriend gotten an infusion date? How is he doing?

Life after Lem is awesome (after the initial “recovery sucks” period). I was busy because I was in Hawaii for 2 weeks, climbed mountains, walked through a lava tube and swam with sea turtles on two different islands!

None of this was possible prior to Lem. I will always owe a debt to the German people and a German doctor and nurse who took a chance on a crazy American and gave me Lem dose #1.

The whole country has been in my thoughts & prayers this week. We look Lufthansa to get to Dresden and I feel simply awful for the tragedy.

Giving thanks everyday for so many things!

Take care,
Emma


emzi
3 years ago

@us-emma

Hiya!! Good to hear from
You. Yes he’s fine. Struggling with the tiredness and occasional achey legs. Yes he is booked for 13th April .. 2 weeks now!! But we both cannot wait 😀

He would have had it a lot soon but as we have the Easter bank holiday here which takes out the Friday from next week and the Monday from the week after and they obviously need 5 days in a row, but that can’t be helped. Only 2 weeks so we can’t complain. Hoping to get away over Easter just to completely chill out and do some fun things before he starts.

Xx

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