Should I choose Lemtrada?

[suelew]

My new neuro has taken me off Copaxone and is recommending I do new DMD. He has given me info on Lemtrada, Tysabri and Gilenya. I want to choose one that will not only slow progression but will make me feel better also. Seems that Lemtrada does do that for some. Has anyone had success with Lemtrada that has MS plaques only in the spinal cord? I have plaques on my cervical and thoracic MRIs but none show on the brain MRI. Thanks for comments.

[KateA2]

Hi Sue,

I only have cord lesions (well, tiny brain stem one too) but brain is otherwise normal appearing. I am on Tecfidera 2+ years and has worked very well so far. I also take 5000iu of vitamin D every day--as has been shown to reduce chance of cord lesions by 30% (according to my neuro) so make sure you've been tested & supplement.

i think Lemtrada is a 3rd-line treatment? I'd probably consider Tysabri 1st (just my two cents!) Best of luck, cord-happy MS is awful.

[suelew]

Thanks for reply Kate. I have a brain stem lesion too! May I ask what your symptoms are? I have symptoms that are like spinal stenosis but MRIs don't indicate that. I have terrible neuropathy and walking is difficult. Have read that Lemtrada is a wonder drug and symptoms go away too. But is that too good to be true??

[lindaincolorado]

Hi suelew
my Dr is at the RMmsC and he is waiting and watching lemtrada. I have been on Tysabri since 10/2006-omigosh this is my 9th anniversary . It has halted progression, cut back on some symptoms and given me QOL. I am a very grateful Ty user

I was diagnosed 1988 and am now 66 yrs of age.

Good luck

[jreagan70]

Have read that Lemtrada is a wonder drug and symptoms go away too. But is that too good to be true??

That is not only too good to be true, it's fantasy. NONE of the MS drugs is a wonder drug and NONE of them make all of a person's symptoms go away. NONE on them.

Having a relatively high effectiveness rate doesn't make a drug a wonder drug if there are significant side effects and risks, as is the case for Tysabri and Lemtrada. Tysabri was pulled from the market early in its lifetime because people were dying from PML. Lemtrada was rejected by the FDA the first time around because of its serious potential for causing other problems (there were deaths during the clinical trials).

Lemtrada hasn't been on the market long enough to have established a track record outside the clinical studies. it also hasn't been on the market long enough for a truer side effect picture to emerge.

Tysabri has been around long enough for the side effect picture to emerge, which included many deaths from PML and probably other infections. SOME people taking Tysabri have regained SOME lost function and had some diminishment of symptoms. That's very individual and improvement is not guaranteed.

Over the last several years, more has become known about the JC virus and how Tysabri affects the development of PML. The risk of death has diminished as researchers have become more aware of the risk factors and can more effectively eliminate those people at highest risk. Unlike Lemtrada, Tysabri doesn't have a list of absolutely known other effects, like a 30% chance of Grave's disease in everyone taking it, and a small chance of idiopathic thrombocytopenia (ITP), which killed at least 1 person during the clinical trials for Lemtrada. With Tysabri, once past the now-reduced risk of PML, the risks of other side effects are more generalized and unpredictable. Even with that being said, a reduced risk of a terrible side effect isn't a guarantee that it won't occur.

The only things that can be said for Tysabri and Lemtrada is that they showed a decrease in relapses, MRI activity and progression, and better than for placebo and at least one other MS medications. There is no indication that people on either medication have their symptoms go away. It's just that the majority of them don't continue to get worse. But some do. For SOME people, both drugs have seemed like wonder drugs because they are in the statistical group that has done very well. But there's no way to know in advance what will happen for you. You might end up getting no symptoms relief, feeling awful from the med and dying from an infection.

You can reasonably expect to have your progression slowed to some degree on either Tysabri or Lemtrada. But you can NOT reasonably expect that your symptoms will all go away and you'll feel great all the time. You might even feel worse in other ways as you have to deal with the side effects of the medications.

Since there's no way to know in advance what will happen for any one person when they start a med, the best guideline is statistical effectiveness tempered by the risks. Since your impairments from MS are already advanced, Gilenya might not have a high enough potential to slow your progression compared to Tysabri and Lemtrada. But the risks still have to be weighed against potential benefits.

So if you're thinking that Lemtrada is a wonder drug and that your symptoms will go away, you 1) are dreaming and 2) haven't done nearly enough homework in reliable places. And until you learn the facts, it's a good idea not to start on any medication, even Gilenya, that you aren't prepared for the realities of. Happy studying!

[KateA2]

Hi Sue,

Sure happy to share. I have constant neuropathic pain from the mid-thigh down in both legs. My left leg is worse than my right. I have transient pain/numbness in my left arm. I have ( thankfully) very rare bouts of bilateral trigeminal neuralgia. I have some spasticity and bladder issues, especially when sick or overheated. Occasionally fatigue.

The brain stem lesion originally caused issues with heart rate (tachycardia 180bpm resting and prolonged QT...ugh, scary) and blood pressure. The heart rate symptoms and BP symptoms have not recurred. The trigeminal neuralgia is thought to be caused by the stem lesion too. The lesion is no longer visible on MRI.

[alk]

Okay, I know a lot of people of this site are leery of Lemtrada, but this drug has given me hope. Are there serious side effects? yes, but the only one that is really that significant statistically is the thyroid issue. Depending on what you read it's either 1 in 3 or 1 in 5, I'm not going to quibble over numbers that are both pretty high. A lot of this is due to how the white blood cells grow back. As far as the other issues go, they are less than one percent just like every other MS drug.

Due to the seriousness of the side effects, you have to get a blood test and urine test every month for the first two years after your last treatment. Because of this, the complications can be easily corrected before permanent damage or death.

I had my 5 days of Lemtrada infusions two weeks ago. I gotta tell you, it's been a rough couple of weeks. My mom is staying with me to help with the kids for six weeks. I have a lot of headaches and fatigue. The doctor said this is normal and will probably last for three months.

Now Good News:
Recent studies have been published that show Lemtrada can stop progression in some people. This doesn't mean that it'll heal what's already been destroyed but it can help preserve what you already have. It tends to work best with people who in the inflammation part of the disease. So the earlier you get it in your disease progression the better off you are. I would say the benefit of this drug is that it gives your body time to rebuild without having to fight another relapse. Some papers published have shown improvements in people two years after having their last treatment.

Now here's the exciting news: 80% of people were still in remission 5 years after their last treatment. That's exciting stuff right there. my neurologist has been known to call it a "5 year cure"

All that being said, it isn't a short term fix. There is a chance of relapse between the first and second year of treatments. Healing nerves does take time. Plus there's a lot of drugs you have to take to counteract side effects. And like I said, that 5 days infusions really knocked me on my butt.

[pb909]

I agree with alk and I have hope as well.

Please note that you have to get a blood and urine test every month for 48 months after your last infusion - best part is Genzyme has a program where they will come to your house and collect it at no charge.

[jreagan70]

Please note that you have to get a blood and urine test every month for 48 months after your last infusion - best part is Genzyme has a program where they will come to your house and collect it at no charge.

What an interesting job that must be. Ding dong. Morning, Ma'am. I'm here to pick up your pee.

[BadAttitude]

That is not only too good to be true, it's fantasy. NONE of the MS drugs is a wonder drug and NONE of them make all of a person's symptoms go away. NONE on them.

Hold on there, partner, I wouldn't start raining on the parade just yet.
It's a matter of semantics, when you stop to consider anecdotal evidence. Every DMD I have been on, with the exception of Gilenya, has decreased my symptoms by way of reduced relapses. In my experience, relapses = symptoms. Take away the relapses long enough, it bought time for my symptoms to recede while my body did its job of healing the damage from the relapse. Might have taken longer than I liked, but it typically worked,and I credit the break from relapses for the healing.

The majority of your post, I agree with. Well-thought out and reasonable...optimistic, not so much. But that's ok; I don't advocate taking heavy hitting therapies without a healthy dose opf skepticism. Try viewing symptoms from a long range perspective when considering the helpfulness of a DMD. I'm currently a Lemtrada patient and I had success with Tysabri and Avonex as well. Sadly, the Avonex stopped working and the Tysabri became contraindicated due to high JCV levels. I'm just waiting to see what happens with the Lemtrada. So far, so good. Very good.

[BadAttitude]

...
All that being said, it isn't a short term fix. There is a chance of relapse between the first and second year of treatments. Healing nerves does take time. Plus there's a lot of drugs you have to take to counteract side effects. And like I said, that 5 days infusions really knocked me on my butt.

I'd just like to point out that the drugs you are referencing are preventative and short term; I think the longest, the anti-fungal series, was for about one month. And that in itself did not have much in the way of side effects. So...don't let that worry you too much.

[alk]

Antifungal? Which one is that? Yes, it is short term. And yes, I would rather take them than the alternative. I'm mostly talking about the steroids and Valtrex.

[BadAttitude]

alk, I think I'm mixing up the meds they gave me to take. The Valtrex (generic version) was to prevent viral infections, like herpes zoster. Since I had shingles before I went in for Lemtrada, I was religious about taking it. There was also an anti-fungal med prescribed as a preventative, much like the Valtrex, but it must have been shorter term.

None of them gave me any problematic side effects, with the exception of the Valtrex clone. I noticed it gave me dry mouth a lot. I drank more water than ever to counteract it...not a deal breaker.

[jllandryusa]

If you ask me, yes!

Just my experience but after my '99 diagnosis I have been fighting to stop the progression w every option out there over the years!! (Copaxone, Rebif, Chemo-Cytoxan, Tysabri, Rituxan, Plasmapheresis, Steroids, IVIG & within the last 2 years Tecfidera & Aubagio). Maybe they helped a little at the time, with the exception of Tecfidera which definitely made me worse.

But... I'm now considered progressive-relapsing & at least an 8 on the disability scale.

Granted every MS patient is different & if your therapy is working I am soooo happy to hear it!!!

For those of us on the fence or nervous of SE's or think we're too far gone or don't have the kind of MS that sees benefit, this video ought to be reassuring. I know it was for me.

Every therapy to treat MS has serious possible side-effects. Ultimately the decision comes down to risk vs reward. For me the possible reward outweighed the risk every time.

This is just me, but I feel the same about Lemtrada. Granted I've kinda tried everything else but honestly, had Lemtrada been an option earlier in my journey my life might be very different.

No more fear or uncertainty here, Oct 5th cannot get here fast enough!!! Nothing but love & the best of luck to all my fellow MS warriors!

http://youtu.be/nNeR6r5Bk68

[alk]

BadAttitude, You are lucky! Valtrex has made me dizzy and nauseous. You are right, that it is better than the alternative...Shingles. I only have one more day to go and then I'm off of it!