Neuro says he'll give me Lemtrada when approved!

[Mable]

I saw my neuro today and told him that I wanted a long-term strategy for my DMT where I'm not giving myself shots every day for the rest of my life. I told him when Lemtrada gets approval, to think about giving that to me.

I have been doing well on boring old Copaxone, so I thought for sure he'd say Lemtrada was too risky. But he didn't. He said he'll be involved in Lemtrada administration for our region, and I can have it if I want it.

By the end of our talk, instead of me trying to convince him, I was saying, "Okay, but I don't want to be your first infusion"

It was funny. I'm really happy it's not going to be a fight to get more aggressive treatment. I'd rather have it now while I'm still doing well than wait until I'm not. And the truth is, I be happy to be his first infusion if he doesn't have more urgent patients lined up for it. He's a good neuro and I trust him.

I really appreciate you all for sharing your experiences here over the months. You're part of the reason I feel confident (and willing to take the risks) about the drug.

[Marco]

mable - that's wonderful. The US seems to be behind other countries when it comes to induction therapies. I am curious to see how insurance companies are going to handle Lemtrada (provided it gets approved). My insurance company previously told me I could not be on concurrent therapies for MS. This would have been off-label IVIg and any of the injection therapies.

I did apply for HSCT trial and was denied. I'm not sure about Lemtrada, but I am going to ask my neurologists for her thoughts about it tomorrow. A research neurologist once told me she would never take Lemtrada because it was like using a bazooka instead of a rifle. I understand her point, but Lemtrada is pretty close to a poor man's stem cell treatment. I do know a handful of people that have done well on it and hope your name gets added to that list.

[Mable]

Marco,
When I was first diagnosed (2.5 years ago), I would ask various neuros about Tysabri (you know, the ones you meet at free breakfast and drug talks for MSers?). They would dismiss it as overkill and too risky for someone who hadn't even failed Copaxone yet. I think my current neuro was one of those.

This must be a sign of changing attitudes. I argued that I don't want to wait to find out what my next relapse is going to be before I get on the stronger stuff. And he was just totally agreeable.

I'm dying to find out what your neuro says tomorrow.

[Marco]

Mable,
Unfortunately, my appointment has been moved until July, but I will definitely update you at that time.


I definitely think the attitudes are changing towards more aggressive treatments earlier in the disease course. Before as our symptoms escalated so would our medications -- we'd essentially prolong and not prevent damage. I know you are on the more aggressive side of treatment and I think you are correct.

[dyin_myelin]

I asked my neurologist about Lemtrada just to get her opinion. Not sure if I'm up for it, but good to know what will get green lit and what your options are. She said she would never script it for her patients, ever. She's seen it used on the cancer ward. Definitely get a conservative vibe from her regarding aggressive treatments.

[Marco]

I asked my neurologist about Lemtrada just to get her opinion... She said she would never script it for her patients, ever. She's seen it used on the cancer ward. Definitely get a conservative vibe from her regarding aggressive treatments.

Lemtrada is the next big "hope" for MS patients and my hope is that it pans out. Since the FDA denied approval, the demand for the medication has gone up. Nothing like telling someone they cannot have "x" to make them want it more. The same thing happened with CCSVI where patients flew over overseas for a largely disappointing treatment. What surprises me about Lemtrada is how some physicians are pushing/demanding it's approval. How many of them have a financial conflict of interest? Where are the post-marketing reports for the international patients? And not just one or two patients, but collectively.

[Mable]

Tough call

I have always thought of alemtuzumab as "the nuclear option" for MS. But the more I read, the more reassured I am that the bad side effects can be mitigated with regular monitoring:

http://www.mstrust.org.uk/informatio...sp#sideeffects

And while many neuros may have conflicts of interest concerning the drug, they can collect plenty of goodies from Teva and Biogen Idec for pushing their drugs. So why kill your patients with Lemtrada when you don't need to? In fact, if alemtuzumab makes MS benign in most people, the greedy neurologist loses opportunities to be bribed in the long run.

All that said...I'm quite aware of the CCSVI effect and my vulnerability to it as a person with an incurable disease. Plus, dig a little and you can see Campath 1H has killed people. Have researchers done enough to keep that from happening again? They seem to think so, but post-marketing studies would be more reassuring.

But how much time do any of us have? Don't treat my MS aggressively now, and I may regret it later as my brain shrinks and I expose my body to drugs day after day, year after year.

It's a very hard call to make. I hope more people come here and talk about what their neuros are telling them over the coming months.

[Marco]

Mable - I think everyone on this thread is in agreement that departure from the traditional DMT selection is beneficial. Rejecting the notion that stronger medications should be restricted to increased levels of disability. The goal is more aggressive treatment, earlier in the process, to prevent the damage in the first place. That was the goal of both cladribine and lemtrada, but both were rejected for approval by the FDA. Induction therapies are not new, but they are new to the MS community. The FDA recently approved Tysabri for first-line care so they might be suggesting they understand the "hit it early, hit it hard" mentality of induction therapies, but only time will tell.

I too am interested what my neurologist (and others) will say about Lemtrada. I am sure one of her warnings will be that Lemtrada's mechanism of action cannot be reversed so it is a significant decision. Of course, none of this matters if Lemtrada is not approved.

Mable - Are you considering using Lemtrada as your only medication with no follow up DMT?

[Mable]

Thanks Dyin Mylin

Here I am going on about how badly I want to hear what other neurologists are saying, and I totally ignored Dyin Mylin's post.

Sorry about that. Thanks a ton for sharing what your neuro said.

Is yours an MS specialist? Mine is not, but I think he occasionally tells me about conversations he has with the head of a large MS center in Michigan. I think he's keeping up.

[dyin_myelin]

Is yours an MS specialist? Mine is not, but I think he occasionally tells me about conversations he has with the head of a large MS center in Michigan. I think he's keeping up.

Hi Mable, nice to meet you. She is listed under Penn's MS center umbrella, but her published research clearly indicates that she focuses on on brain tumors and QoL issues in that community. She intimated someone she loved died of a brain tumor. That being said she did let me on Tysabri at my insistence, although she does not want me on it. With my titer climbing .90 points in one month, we are both migrating over to tec with mutual good feeling. Penn lets me contact her through the patient portal which is also good because they book out apt.s at three months.

[Thinkimjob]

I can have it but now I don't think I want it.

This is from the MS Trust, so I imagine they're credible:

Common side effects:

overactive or underactive thyroid gland leading to thyroid disorders, affecting approximately 1 in 5 people.

idiopathic thrombocytopenic purpura (ITP), a disorder that prevents blood from clotting, affecting 1 in 100 people.

Oh and this:

Two larger phase III trials have confirmed that alemtuzumab is more effective than interferon beta 1a in reducing relapses. While people taking alemtuzumab were less likely to accrue disability, the effect was less than that seen in earlier, smaller studies.

CARE-MS I (also known as CAMMS 323) was a two year trial comparing alemtuzumab and interferon beta 1a in 581 people with relapsing remitting MS who had not previously taken other disease modifying treatments2.

Alemtuzumab reduced the relapse rate to 55% of that seen in people taking interferon over the two years of the trial. 78% of people in the alemtuzumab group didn't have a relapse during the two years of the trial compared with 59% of the interferon group. There was no significant effect on disease progression, with 8% of the alemtuzumab group and 11% of the interferon group showing a worsening in disability.
CARE-MS II (also known as CAMMS 324) looked at 667 people who had continued to have relapses despite treatment with beta interferon3.

The relapse rate of those on alemtuzumab was reduced to 49% of that seen in people taking interferon over the two years of the trial. 65% of people in the alemtuzumab group didn't have a relapse during the two years of the trial compared with 47% of the interferon group. There was a small improvement in EDSS score (disability scale measure) for the alemtuzumab group while there was a small worsening in the EDSS score for the interferon group.

I thought this was the "nuclear option". Not so, apparently.

[Mable]

Why do you say that Job? You will likely lose thyroid. But people treated with Lemtrada often have no further disease activity, and the latest reports from Cambridge show those treated early aren't becoming progressive at the same rate as natural history data suggests. Furthermore, it returns brain atrophy to age appropriate levels. And did you catch the part about reversing disability?

I'm cool with losing my thyroid for those results.