Are the Benefits Worth the Risks of Lemtrada?

I think you are very brave. My daughter was diagnosed in 1997, and is, now, bedridden with severe disabilities. I suppose her MS, now, would be called SPMS, for lack of a better label. Lemtrada sounds great, but the risks are too scary for her. She's not ready to take the leap.

I wish you luck in this new path. I was Dx in 1993 and have been on most of the dmt's. I received my first round of Lemtrada in February 2016. I am almost eight months post-Lem and so far, so good! I have no new lesions, and no new MS activity. My biggest advice, hydrate hydrate as much as you can during infusion week, and be as positive as you can!

Hi Ed, I am very interested in watching your progress. I also am wanting to try Lemtrada. I was on avonex for 15 years, then recorders for another 4. Had bad side effects from both, so I am now off therapy. My dr. Is still skeptical of Lemtrada so won't prescribe it. I will be relocating to Oregon soon and will be discuss this option with my new dr. So hopefully soon I will get a chance to give it a try. Best of luck Ed

Hi folks. I've been reading all your posts, the people that are anxious to try lemtrada but are nervous about it. Remind me of myself a yr ago. I'll be starting round 2 in july, honestly. I went through a period that I wanted to cancel the 2nd round personally I felt no better. My walking has gotten worse and the biggest thing I've noticed since starting lemtrada last July 2016 is the Depression I deal with every day. To me the depression has gotten alot worse since starting the lemtrada. Not really sure why. I feel fortunate that I had no real serious side effects. In the round one series But I almost feel like I'm pushing my luck going for round 2. When you sit and read all the things that could go wrong. Yes it's scary. But I was kind of limited to what m.s. drugs I could try because of testing positive for that JV Virus, something I had never heard of. Have any of you been tested for the virus. Anyone test positive for it. If so. Are you limited to drug therapy let me know. Please. Tom

I'm 60 years old and was dx'd '06. I was on the 99th Tysabri infusion with no benefit other than slowed progression, as far as I tell. I didn't think of it as bravery, but I had the Lemtrada infusion program done the week of May 16th of this year. I hadn't had so much as a sniffle for twelve years, but all that changed on May 28th. I was warned that there would be a possible 'crash' within a week or so of the completion of the Lemtrada infusion. On the 28th I attempted to use my walker to go to the bathroom, but I was so weak, I could only make one step before falling down. I was unable to get without assistance and it was very difficult to breathe. I was transported by ambulance to the hospital. I was initially diagnosed with pneumonia, but after a few hours I had C-Diff virus, NORO virus, and a UTI. I was in the hospital for nine days; on June 5th transferred to a Rehabilition hospital. I under went physical therapy twice a day, six days a week. When I arrived, I couldn't even stand up, but after about ten days of grueling therapy, I could use the walker again, although I can't travel the distance with it that I could prior to Lemtrada. After three and half months, I was released form rehab on October 12th. I'm going to outpatient rehab a few days a week and do all kinds of exercises at home daily, but it's a struggle everyday. A struggle that I didn't have prior to Lemtrada. I've already decided not to do the second dose in April 2018. This is my experience with Lemtrada. Who knows? Your could be great!

..... thank you for sharing your experiences..
I was diagnosed in 2000
Started with Rebif and had horrible side effects. After that I started with IVIG. This drug is not usually used for MS.
I'm no about 12 years on IVIG. I don't have major problems..... but my neuro wants me to start with Lemtrada, since my brain shows big lesions....
My immun System is quit strong ..... and I'm never sick.... no flu no fever or other classical common diseases....'
And that's why I'm more than afraid to start with Lemtrada..
42 years eating healthy, and building a great immune system..., to now kill it with Lemtrada....
I'm so insecure ?

Hello
I have had both rounds of Lemtrada, the second being February 2017. The first year was rough in terms of flare ups of existing symptoms for me but since round 2 I have been generally really well, in fact there are days when I can't remember ever feeling so well. I have had no new symptoms which is what Lemtrada is meant to do.
Just before round 2 my thyroid was underactive for a month or so and then it became overactive. I now have Graves' disease which is one of the potential side effect of Lemtrada and am under the care of an endocrinologist for that. Despite this I have no regrets so far for choosing Lemtrada.

I'm on Lemtrada for 7 years.
It's excellent and not a bad word to say about it.
Have no fears people; everything comes with potential side effects.
I have had no side effects.

I'm considering lemtrada since it doesn't seem like zinbryta is working for me. Should I try tysabri first? I've been on copaxone, rebif, rebif with pulse steroids, tecfidera.

Coming in late here-- I was in the Stage 4 trial for Lemtrada, had two infusions a year apart (last one 6 years ago). I had some problems-- got the thyroid disease (but many women my age get thyroid problems anyway, so it might have been a coincidence).
Other than the thyroid meds, I've been off any treatment since 2011. As I said, I was in the clinical trial, and they probably have found ways to limit the side effects somewhat, but it's still a very serious drug.

It didn't just stop the progression for me. It's reversed most of my symptoms. I still have a couple minor issues with my hand and restless legs, but nothing like before. So I'm a success story. Two caveats-- it's a very expensive (VERY) treatment (now it's approved, so insurance should cover much of it), and it takes a week or so each time, and infusions with basically a cancer drug isn't fun for a week. (Then again, it's only a week... not months of chemo, so I counted my blessings.)
Also, there's about a month's time when the immune system is building back, and you could be prone to viruses especially then.
It's a tough decision to make. I didn't have insurance then, and could only get meds through a clinical trial, so I sort of stumbled into it.
There are real dangers, but many of the people in these trials ended up almost symptom-free. My last test, the neurologist said I was "neurologically normal." Yay! But it is such a serious drug.... research a lot first.

For those reading this blog, please know that the prescribing information we all read for Lemtrada does not include an important area of infection which no one really thinks about because it is not listed: Fungal Infections such as disseminated coccidioidomycosis (Valley Fever for those in the more arid south and southwest) and Histo (for those in the greener wet regions. 4 months to the day of my last infusion I became very ill with 102.9 fevers, sever rigors which made my intention tremors look normal, profuse sweating when I slept to the point of near kidney failure because I would make my bed/pillows/clothes so wet you could wring them out and finally after admission to the hospital with X-Rays, CT Scans, MRIs, Spinal Taps, Pulmonary Lavage and biopsies of the lymph nodes behind my lungs they found I had disseminated coccidioidomycosis and put me on 800 MG of Diflucan, a nasty anti-fungal drug that makes my MS fatigue look like that is running a marathon. I am told I will have it for the rest of my life and will need to take some dose of an anti-fungal until I die or they find a cure for MS because of the suppressed immune system and the fact that Lemtrada just wacked away my T-Cells. All I can say is, I do not think I would do it every again and want all prospective patients to ask lots of questions because of what they are not writing in their clinical trials and shiny brochures.

FROM THE LEMTRADA BROCHURE AND CLINICAL TRIAL SHEET:
"Serious infections: LEMTRADA may cause you to have a serious infection while you receive and after receiving a course of treatment. Serious infections may include:
Herpes viral infections. Some people taking LEMTRADA have an increased chance of getting herpes viral infections. Take any medicines as prescribed by your healthcare provider to reduce your chances of getting these infections.
Tuberculosis. Your healthcare provider should check you for tuberculosis before you receive LEMTRADA.
Hepatitis. People who are at high risk of, or are carriers of, hepatitis B (HBV) or hepatitis C (HCV) may be at risk of irreversible liver damage.
Listeria. People who receive LEMTRADA have an increased chance of getting a bacterial infection called listeria, which can lead to significant complications or death. Avoid foods that may be a source of listeria or make sure foods that may contain listeria are heated well.
These are not all the possible infections that could happen while on LEMTRADA. Call your healthcare provider right away if you have symptoms of a serious infection such as fever or swollen glands. Talk to your healthcare provider before you get vaccinations after receiving LEMTRADA. Certain vaccinations may increase your chances of getting infections.

Oh and by the way, the Lemtrada Central Lab Program for monthly monitoring, at least in Arizona where I can only use LabCorp or EMSI is a joke. They either use the wrong tubes for the blood work, do not draw enough tubes of blood, mishandle the urine sample or just plain loose your sample, delete or misplace your standing lab order and look at you like you have 3 heads when you tell them this is part of the Lemtrada Central Lab Program through Sanofi-Genzyme contracted with EMSI or LabCorp and want you to pay. I was all signed up to be monitored for 4-5 years on a monthly basis, but less than 1 year in I do not know. After nearly a year of fighting with Sanofi-Genzyme, MS-One-To-One, LabCorp, EMSI, my neurologist and I are talking about other alternatives which I would have to pay for to get consistent regular blood and urine monitoring. Needless to say, I have reported these instances to the FDA via MedWatch and telephone calls, so all I can say is check all your options and go in asking every possible question you can think of and those of others.

Hi,
I've just been offered Lemtrada after my latest relapse. I felt like my neurologist almost 'sold' it to me as a bit of a wonder drug - but in fairness did explain in detail the potential side effects.
After talking it through with my partner, I think we have decided to put my name on the waiting list (apparently it's quite long!) and then at least it's available to me. I guess I can always change my mind.
I'd just be interested to know about people's experiences? I'm 39 and up until recetly have been doing quite well with the MS - I generally have relapses every 2-4 years depending on how you differentiate a relapse and a flare up. In short, I am pretty much debilatated every couple of years although the length of the symptoms varies.
I've been on Tecfidera for 4 years ish and thought they were doing the job. I'm worried about the psychological effects of the drug as this was something I hadn't really considered. But I'm also just generally worried!

Im sorry for my english, its not my first language. Please let me share my experience from central Europe. I have MS since 1996, I was 15. I was diagnosed 2006. The local neurologist didnt send me to any test. I had about 10 attacks durig that 10 years. I was diagnosed in 2006 and received corticoids, because I didnt meet criteria for any better treatment. I got Copaxone in 2009. Later Tecfidera in 2016. Im positive with JC virus (3,32) Tysabri was not recomended. Our insurance company advised me the Tysabri as dangerous treatment, but not impossible (JC virus is not contraindication for Tysabri, only unsafe). I got Lemtrada finaly in March this year. Infusions were ok, i got also 1000 mg/day corticoids, drugs for fever, for rash, antiviral drugs. I felt good, no pain. I was only sick, couldnt eat much. I ended up with 49 kg, Im 1,75 metre tall. I caught only bronchial pneumonia two weeks later, nothing else. The worst side effect is permanent fatigue, weaknes and trembling. Now its 3 months since Lemtrada treatment and its not better. I feel much worse than before Lemtrada. Doctors say, its not because of Lemtrada, that I feel so bad. And its because im not possitive person and i have always been complaining about weaknes and fatigue. Its true, i have problem with power in my legs and Im very tired quite often. Actually I feel depressed too. I have to go to work, full time and I suffer there. I need to take care of my doughter, who is 6, do all the housework and my body doesnt work. Doctcors are sure, that its impossible that the miracle Lemtrada have such a side effects. I feel like malingerer because I complain. How to get rid of this? Will I feel better for example in half a year? There are only 2 people with Lemtrada in our county. And the other patient feels absolutely fantastic. Is it my fault that I dont? Have I done anything wrong?

Hey people just wanted to advise you all to get food allergy tests done as alot of people with ms are actually allergic to gluten, dairy, legumes and a host of other stuff, check out the american man matt embry who has not had a attack in twenty years, he has a award winning film on itunes that i suggest u all watch it explanis everything, ms is not a mystery it peoples reaction to differnt foods, just by eating mostly heathy, i keep to chicken fish and loads of veg, fruit, nuts and my hands went back to normal within weeks

My doctor is recommending Lemtrada. I have had an exacerbation every September for 3 hrs in a row. First 2, I had been on avonex for 12 years, last year changed to Copaxone. I haven’t got much better since the last one, last year and now I’m having trouble walking and tingling in my right area. I am so scared of the Lemtrada side effects, well scared is an under statement. I have sent a request to join the FB group for Lemtrada patients, I hope that helps.

Everyone - This is such great information. You have no idea what a relief it is to hear real life stories from people actually taking the drug. I was diagnosed when I was 25 years old. I started Avonex which I had an awful 18 months on while my body adjusted. I've had three or four relapses since, but my neuro told me that I should stick with the Avonex. I had had persistent numbness in both my legs for a couple of years now, so I decided to get another opinion. I managed to score an appointment at the Las Vegas location of the Cleveland Clinic and my new, world renowned neuro says I should have stopped the Avonex years ago given that there were what she considered to be obvious signs that the drug wasn't working. My scans all show that the disease is progressing pretty quickly in me and she recommended Lemtrada. On the one hand: What better time to try the most aggressive treatment than when you are younger and as healthy as you can be given the circumstances? On the other hand: If the drug kills me by way of a brain or liver attack, I will leave my family bearing the knowledge that it was avoidable. Sorry for the morbidity, my wife and I are still trying to decide if we go with Lemtrada.

Hi Kat...I agree you are lucky to have found a knowledgeable neuro. I was dx in 1993, at 23 years old. Avonex was the least effective dmt for me in all of the years since then. I did Lemtrada in 2016, second round in 2017. I have had no new progression in my MRI scans although I have had progression in symptoms. I have had no regrets in choosing Lemtrada. Although Lemtrada was not my miracle, I wish it had been around when I was still in the early years. Do your research, it can be a big roller coaster for a few years. The earlier you choose Lemtrada, the better the results will be. I wish you the very best of luck!

I was diagnosed with MS in 2002. The first and only drug I have ever taken is Lemtrada. I started treatment in phase II of clinical trials. I was randomized to the low dose branch of the study. I believe that is the current dosage now given.

My first infusion was rough. My lack of 'good' veins made them unable to switch IV locations during the week, and by the end of the week of infusions, my arm was on fire. At that time they also were still working on combating side effects. I had a terrible head to to rash, and I wasn't prepared for the side effects from the steroids that I was given along with the infusion of Lemtrada.

The first year of my participation in the study, and I had monthly MRI's and blood draws. The second year, the trial and my infusion was put on hold. I had my second infusion 2 years after the first. It went much more smoothly. They learned how to pre-treat for certain issues, and more importantly, I was able to take 3 weeks off of work for infusion and recovery.

So - the good news. For me, this drug has been miraculous. When I was diagnosed, I had 48 active lesions in my brain, and several in my spine. Since that time - and we are talking 16 years - those lesions are no longer advancing. I have had 1 advancing lesion and one relapse during that time. The relapse was treated with steroids. My Dr. expected me to be in a wheelchair or using a walker in 5 years time when I was diagnosed - before my treatment.

Do I still have MS? Absolutely. Do I know it? Yes. But I would consider it a mild intrusion in my life. I have other health issues that impact me far more greatly.

I did have issues from the second infusion. I went into A-fib 15 minutes before I was to be released from my last infusion. I don't believe it was caused by the drug. It's just as likely from the steroids. It's also something I have had before treatment.

If I were to read about the drug now, there is no way I would take it as the warnings that go along with it are very frightening to me. But I'm glad I was part of the study (and still continue to be - they are still watching us!). Taking the drug was life altering for me.

Hey to Everyone. I was diagnosed in 2002 and was on Avonex and did well for 6 years until new symptom of severe pain and the doctor changed me to Rebif. I still have the pain without
Lyrica which treats the nerve pain. I work full time and the pain meds make it very tiring. I have read that this medication can revert some symptoms and I would really like to try it. Does anyone know if the symptom of pain can revert to a little pain and is it possible to work after all the treatments and would I be done with MS drug treatments after I finish round 2?

I’m curious on y’all’s thoughts about using Lemtrada in an effort to hit MS hard and pre-emptively even if you have a mild case of MS. I’m 40 years old, diagnosed 6 years ago. Been on only Copaxone... would love to have the HSCT to completely halt progression. While I’m thankful that my path has been comparatively mild, I’m struggling with the idea of waiting to see how the disease progresses.

Hi All,
I’m amazed at reading all the comments on Lemtrada. I completed my 2nd round of this Chemotherapy(Lemtrada)drug 8 months ago. I’ve had MS since 2001, I was managing and was active so Neuro said to try this drug to arrest the condition now whilst still good. Little did I know that this would make me even worse.....which it has. 1st round wasn’t good but my neuro said I had to complete the 2nd round 1 year later to see the benefit. Which I did. He is in denial that the chemo has made me worse even though all my family, friends and work colleagues have noticed the decline since the 2nd round. I feel like I’ve been administered this lab monkey/rat drug which has ruined my life, especially as I had recently become a father and feel useless. Strangely the only thing that works for me now is to have a bottle of beer ever couple of weeks and my walking returns to near normal. When I showed my neuro video evidence he went very quiet. I am now just too sceptical about all these drugs and have promised never to take another MS drug again, steroids on the occasion though.

I was diagnosed with MS in 1993. I went from Avonex to Tysabri. I was on Tysabri approximately 10 years. I started Tysabri as a study patient. My JC Virus was climbing and climbing, my neurologist switched me from an every 4 weeks infusion to every 6 weeks. Then my JC Virus started going back up again. I asked my neurologist about Lemtrada and he did not see a reason why I wouldn’t do it. My first dosage was in August 2017 and my second September 2018. I would have to say I was scared and had some ups and downs but over all I do NOT regret doing the treatment. 2 years out from my 1st infusion and I’m doing great!!!!

It makes me feel optimistic that others have had such good results from Lemtrada. Unfortunately, I have not. I keep waiting for the positives to occur.
I had my first infusion at the end of June 2019 (now October) and I am anxiously waiting for things to turn around.
I have hand coxsackie virus (hand foot and mouth) and herpes zoster (shingles) since then. The coxsackie although no longer active, has caused my tongue to stay sore and sensitive. With my zoster, the rash has dissipated but am now dealing with post herpetic neuralgia.
My spasms in my legs are SEVERE, although I am not necessarily blaming this on Lemtrada. I am taking tizanidine at bedtime (cannot during the day because it makes me or puts me in a stupor and drowsy) and baclofen during the day.
I also am on Magnesium and Verapamil for my spasms.
When I am not having spasms, my legs ache.
Weakness, cog/brain fog and balance, are my worst symptoms. I do not have surface sensation in areas and very minimal in others. I am a physician and continue to work so I take Modafanil for focus.
I do not have any other health issues. My blood pressure has always been on the lower end of normal (100/50), no heart disease or diabetes, low cholesterol and am in the middle of my healthy weight range (bmi 21.8%) and follow a gluten free diet.
So I guess my question is that how long after the infusion did many of you start to improve? I am struggling majorly. I am trying to stay in the workforce because I am not the type to give up. Some days, many days, are bad for me. I actually currently am having more bad than good,
Would appreciate any insight or suggestions you all may have.

I have now finished my 2nd stint of infusions and do feel a little bit better in my self ,at least I don’t think I’m going to be in that wheelchair in 5 yrs as I was told if I didn’t have treatment , but I am now hearing that Lemtrada has been shelved here in the UK but it has done nothing but giving me back my life .