I recently traveled to Dresden Germany for my first 5 doses. I am writing a blog about the experience as well as other places to get Lemtrada & the costs. The blog can be found at:
If you have experience with Lemtrada I would like to hear your story so other people can benefit from your experience.
If you did go abroad for treatment and are willing to share your contacts & the cost of your treatment I would like to share that as well.
So far I am really doing well (took Lemtrada 4/7/14 to 4/11/14). So I am a newbie. I am very interested to know what the future holds with this treatment. I am also monitoring FDA actions on Lemtrada. In December the FDA denied approval of Lemtrada due to minor study design issues. Genzyme (the manufacturer) decided to resubmit to the FDA, rather than protest the first ruling. They will resubmit in the next few months.
The drug is currently available in the EU, England, Mexico, & Australia. To my knowledge the last two are not infusing yet & Canada just started. I don’t know of a site taking US patients yet but I am sure someone does.
I am happy to help anyway I can. The FDA is set to rule later this month on approval in the states.
I would recommend you read the blog (Lemtrada.blogspot.com) and then contact me through the blog (send me a comment or message) and I will be happy to answer anything else. This is a safer way so we don’t have to post our emails on an open forum like this.
I have had MS since 1991, and started Lemtrada October 2014. The actual treatment (5 days of injections) was not a problem. it’s the side-effects that has been a problem for me. Now I have a huge attack, waiting to see if I can be treated with cortizone..
i would recomend Lemtrada purely out of the results of the studies that have been done. and the benefits of no pills or injections swayed my decision.
Good luck if you are having it done, and I wish you good health 🙂
I have heard that Medicare does cover Lem but have no personal experience. Join the closed Facebook group called Lemtrada for MS Treatment. You have to ask to join but they accept everyone. Post the Medicare question there- some people there are on Medicare.
Beth- from the blog Lemtrada.blogspot.com was treated when she was 60 (last year) and I’d seeing improvement. Also I know some people with progressive disease will see stabilization and modest improvement but it can take 3 years after initial infusion.
If you post a comment to the blog it sends me an email & I can email you back to answer your question. I don’t want to put my email here to avoid spammers getting it.
Could you be more specific about the side effects you’re experiencing. I’ve had MS since 1987, I’ve tried just about all of the meds. currently currently available. Lemtrada is my last best hope at this point and time is slipping away.
After I had the treatment, I have had shortness of breath, high pulse, fever, tiredness and are curtently in hospital being treated with solumedrol ..
I am hoping Zthat these side-effects will calm down soon, and are going to control every 3 months.
Since it’s been approved in the US, I have been trying to get on it! My MS Neurologist is the one chosen for this area to be in charge of it, so I asked him if I was a candidate. He says that they are using it as a kind of last resort for patients whose previous treatments have not worked very well (at least 2 or 3) because of the potential side effects. Well I still get relapses and have been every year since my dx. I’m now on Betaserone for the last 5 years Rebif for 4 years before that, and Avonex for 2 years before that. I also have a hard time convincing my doc when I’m in a relapse. Just because I look great doesn’t mean I feel great! I also don’t run to the doc everytime I get sick – I live too far away. I am 68yo, diagnosed in 2003. I’m also on a lot of oral meds for some of the symptoms of the MS, including treatment from a pain clinic with narcotics for my pain. Ever since I read about Lemtrada, even before it was approved here, I wanted to try it. I even flew down to Tennessee to see a specialist that was doing a research with it. By the time I got an appointment, the study was closed. What a waste of $2000.00 it cost me there. I’m not concerned about the side effects; all the drugs have side effects – some worse than others. At this age, I just want a chance to be free from all these shots and oral meds I’m on every day! I want some quality in my life now without being strapped down. I still get side effects from every shot I take and have for years now. Sometimes it feels like they get worse instead of better. Anyone else out there having problems getting on Lemtrada?
I don’t know of anyone specific who has had difficulty getting on Lemtrada. It sounds like you have outlined an excellent ‘argument’ for trying the drug the next time you talk to your neurologist. If you’ve still been having break-through relapses while on treatment, then that might be a reason to try something else even more aggressive. The treatments you’ve tried so far are each beta interferons. There are other options available now, in addition to Lemtrada, that work differently. Definitely sounds like a great discussion to have with your doctor.
“Side effects may happen while you receive LEMTRADA and for 4 years after you stop receiving LEMTRADA.
Your healthcare provider will order blood and urine tests before you receive, while you are receiving,
And every month for 4 years after you receive your last LEMTRADA infusion. You may need to continue these blood and urine tests after 4 years if you have any autoimmune signs .It is important to have your blood and urine tested, even if you are feeling well and do not have any symptoms from LEMTRADA and your multiple sclerosis.
Lemtrada is administered as intravenous infusions – for five consecutive days initially and for three consecutive days one year later. Lemtrada should generally be reserved for people who have had an inadequate response to two or more MS therapies as the product can cause serious or life-threatening autoimmune disorders , infusion reactions and malignancies. Lemtrada, like Tysabri, is only available from certified prescribers, and patients will be enrolled in a REMS program to ensure that ongoing periodic monitoring will be maintained to detect potential problems. ” from FDA
I had my first round of Lemtrada in 2015, I plan to go for the second round in November. I’m not sure if it’s worthwhile in that I haven’t realized any changes good or bad. My path seems the same, very slow progression. I was diagnosed in 1987 I think my MS might be considered “smoldering”.
Why have you and your doctor decided you should forego the second round?
Coupe -I have several diseases, many of which overlap. After the first round of Lem in June 2015, I felt that my condition/symptoms worsened. I have also developed new symptoms, which my neuro feels are more likely due to my Lupus than to my MS. An MRI at 12 months post-Lem showed no increase in number of lesions, and possibly some fading/shrinking of existing ones. Under these circumstances, we decided it was not worth subjecting my body to more MS treatment. Basically, the thinking is that the Lem has done all we could ask of it and now it’s time to deal with the other issues. Instead, once my counts return to normal (lymphocytes still low) we will pursue more aggressive treatment of my CNS Lupus.
It’s as confusing to me as it probably sounds to you. :/
I had my first Lemtrada infusions in March 2015; My second series of infusions in March 2016.
Diagnosed RR in 2000. Treated with Avonex, Tysabri, then Gilenya while waiting for FDA approval of Lemtrada. Went on Lemtrada one week after it was approved, and none too soon. I’d been on an escalating course with MS symptoms to the point that when I went in, it was during a full-blown relapse with new symptoms I’d never had before: Loss of balance, gait disturbances, inability to regulate my ambulation/control of my core muscle groups, spasticity, noticeable cognitive deficits that affected my work performance (got me fired).
The megadoses of steroids that go along with Lemtrada tamped down the relapse, and the Lemtrada gave me bought me some relapse-free recuperation time so that physical therapy helped me regain my walking, singing, and balance. Took me a year and a half to do it but I’m back up to about 90% capability pre-relapse.
Pecpinto, I was in the US clinical trial, so had an early experience. POSITIVE.
I had two infusions a year apart (7 years ago).
The first I think was 5 days.
The second was 3 days.
I have not have any MS medications since then.
during the first infusion, I had agitation (had to keep getting up and walking around, very anxious). The dr gave me Xanax in the IV infusion. That took care of that.
The first infusion, I also had hives. That was probably in reaction to something else (not Lemtrada) in the IV (benadryl)?
Second infusion, no problem.
Both times, I was treated beforehand with an anti-viral drug because they thought there might be some risk of getting a virus. I didn’t have any problems.
Also I was treated with steroids during the IV. No problems.
For a few weeks after the infusion, the immune system is very repressed (this is what causes the “cure”). I didn’t get any infections, but that was a concern.
Biggest problem– I got thyroid disease, which was a known side effect. It’s controlled with synthroid. I don’t know if it’s actually from the infusion because I’m a woman in her 50s, when many women develop thyroid problems. They will monitor you for this at any rate, and most people are fine after the simple synthroid treatment (lifelong, but it’s just a pill).
I didn’t have to pay (clinical trial paid for it), but I know it’s terribly expensive.
7 years. No relapses. Not one.
No active lesions last MRI.
Most of my previous symptoms have been reversed– not just stopped. Balance, bladder, vision, memory, numbness– I’m pretty much back to the very start of MS.
Last checkup – “neurologically normal”– low normal, but in the normal range.
I have not taken any other MS meds since then.
This is a very individual drug. It might not work for everyone.
It was great for me.
I still have some MS symptoms mostly weakness in my hands, but nothing that interferes with my daily functioning. I was on Rebif (which was helpful) and getting worse before this drug.
I can’t say much about physiotherapy because, as I said above, everything just got better after treatment. I still work a lot on my balance with a yoga instructor, but that’s it.
It might not work for you! But if it works, it might work very well.
Make sure you are tested every 6 months for thyroid and liver and kidney function.
During the first day of infusion, see if you have any reactions (allergy type reactions, agitation), and the doctor can adjust your IV combo the next day.
Do both infusions. The second one might be the one to put MS into permanent remission.
Be very careful to avoid infections and viruses the first month after infusions– your immune system will be ‘rebooting’ and not at top function.
There might be a few months without much progress– this is a really longterm treatment.
Take vitamin D-3 and zinc, just to power up the immune system after a few weeks.
Best of luck! I don’t want to say “miracle,” but I thought I’d be in a wheelchair or bedfast at this age, given my condition before, and I’m pretty much fine. I hope you also have a great result. The infusions are no fun, but I’d go home each night and work– they aren’t painful or debilitating.
Stay positive. There are so many good treatments now… one will work for you.
Thank you so much for your testimonial!!!
I’m thrilled with it !
Hoping everything goes well for me, just wait and see!
Started Monday, all fine at this stage.
Thanks for the good advice and tips !
Pedro da Costa Pinto – Portugal
@pecpinto So thrilled that you were able to get such great feedback to your question. Alisa thank you for sharing in such detail your history with the drug as well. It’s wonderful to have such supportive community members. Plus I’m so happy to hear how well the medication worked for you! That’s wonderful news. I hope it does as well for Pecpinto.