I am a woman with Multiple Sclerosis and for the last 6 years I have been in a drug study that has changed my life. The drug was recently approved by the FDA, and I want to share my personal experience with those who would like to know more about ...

A close family relative of mine recently got diagnosed at the age of 48. He had been experiencing lower limb numbness for years, which he had shrugged off as effects of a work accident he had years ago.

He has been given a large list of behavioral and dietary changes he can do to assist his treatment, have you adopted many changes to your diet and lifestyle to help treat your MS? How effective has it been?

I'm sorry to hear that your friend was diagnosed, but medicine has come such a long way! I hope that it can be fairly easily managed for him. :) May I ask if your friend was given this list by a neurologist who specializes in MS

At the very beginning I changed my diet and there were no advantages or disadvantages for me. I spoke to my neurologist about it and she is of the belief that you will generally feel better if you eat well and stay active, but does not believe that it has been proven to make any difference with MS. I have to say that I do not feel any better or worse when I'm eating well or poorly.

Yeah, the advice was from a MS specialist. The changes were things like, eat more chick peas. I can't recall any of the other changes.

I'm just hoping that he can live a normal life as close to a full life expectancy as possible, he's one of the most fun loving people I know.

Thanks for your response

Alemtuzumab has definitely made a difference in how I feel day to day! There are a lot of advancements being made, so I am confident your friend will be just fine. :)

Does it help at the physiological level or does it make you just feel better? Either way great for you

I can go back and look at my MRI results over the last six years, but I believe that there have been no new lesions on my brain. Alemtuzumab does not repair past damage, but it greatly decreases the occurrence of new damage in most people. So, I feel better because my body is not attacking itself as much as it used to.

That's great to hear. a close family member of mine is affected

I hope they find the right treatment for them!

I used to be a pharmaceuticals sales intern, I know the bullshit I used to pull to dupe desperately sick people into using craps meds in order to boost my bonus

Not happy about that, but I do hope the people working on him are not like the former me.

I truly believe this drug is a game changer, and I have had nothing but good experiences with Genzyme, so I hope you're right! It would make me very sad to see something that made such a big difference in my life turned into a shitty drug with a big price tag being sold to people who are desperate for a better option.

What are two things that the general public would be surprised to learn about being in a drug study?

This is a tough one! After thinking about it, here are my answers.

1. While it is very regimented and I have to have blood drawn every month, I don't feel as much like a lab rat as you might think.

2. Not all drug studies are to see if a drug is safe. Campath is a cancer drug that has been used for quite a long time, this study is to see how it would work as an MS treatment and Alemtuzumab is the name given for the study.

I was in the Gilenya study and it was horrible. I had a job and they had a schedule. I had worked it out to be available for everything the study required with my job. I also had a child in daycare and my husband had a job too. All of these things had to be worked around. But the study at George Washington University Hospital would call me and tell me they needed me there in 90 minutes or less or I'm out of the study because something came up with one of the study doctor's schedules or whatever. Well what about my schedule? I nearly lost my job! I was working a little over an hour away and they did this to me all the time and I would have to get my daughter out and rush to get to metro and call my husband who would rush to meet us there and we lost soooo much money because of the additional unplanned time off. After 9 months of it, I had to quit the study so we wouldn't lose our jobs.

:/ that sounds awful. I'm so sorry you had such a bad experience! I have not had any problems with scheduling for this study, thankfully. Have you found something that works for you?

Medication wise no. I got pregnant right after and then breast fed for 2 years. I have tried nearly every interferon based medicine but I am extremely sensitive to them and the side effects never lessen and are severe for me. So until my doc is willing to try a pill I am on nothing and haven't been on anything consistently for about 7 years now.

I would be pushing for that pull pretty hard! Not taking anything for your MS could be doing a lot of harm. :(

None of the neurologists here will prescient the pills because they are new and think they are too risky. All of the interferon medicines make me so sick that I basically bed ridden even if I stay on them for 6 months or longer. And I live an active lifestyle and have 2 kids and would like them to still have a mother every day. So what I've decided is to forgo medicine now while they're young and hopefully if I gamble wrong and end up in a wheelchair they will have fond memories and be old enough to do activities on their own.

I've tried to get medicines that don't make me sick. But they won't prescribe any of the newer ones since they don't know them as well. I've argued that an FDA approval is all you need and it's not considered experimental by insurance so your opinion shouldn't matter. But they won't write a script for it.

May I ask what area you're in? You might seek another opinion.

Northern Virginia but I have kaiser insurance so all the doctors are kaiser doctors and this what they've decided

Look for a doctor or hospital who will give you financial assistance and apply for assistance to pay for the pills. There are other options. Fight for your health!

Have you noticed it having an impact on any heat intolerance you may have had?

Unfortunately, I have not. :( this summer has been killing me. I just try to stay cool and well hydrated as much as possible.

So what would you say have been the biggest benefits?

I've had no new lesions on my MRI's, my flare ups are much less debilitating, and I no longer have to give myself a shot every day. :)

What happens after the drug study? Since the drug is experimental, can you even get the drug to continue your treatment? Or do you go back to the previous drug that you were using?

I know that when I was filling out paperwork to find out if I was eligible, they noted that there were some restrictions based on what treatments had been received in the past, and that participation in the study would limit what treatments one could receive after. They were not very clear about it and I was under the impression that it was something my neurologist would discuss with me if need be.

The study was actually only 2 years, I have signed up to participate in each extension they've offered me and will continue to do so either until they stop offering, or until the infusion are inexpensive enough that it no longer makes any sense for me to have monthly blood draws and yearly MRI's (this would be a long time from now, since they're still collecting data and I'm in it for the science at this point. :) Well, the access to the drug when I do have a flare up doesn't hurt.)

Are you allowed to share the name of the drug? My dad is about to start copaxone after being taken off infusions for almost 2 years. He is always looking and hoping for new advances in MS research and knowing his options for new drugs gives him a lot of hope.

Tall him to talk to his specialist about Lemtrada! May I ask what infusion he was on? Tysabri?

Yes, it was Tysabri. He had to stop his treatment because he tested positive for a virus you can get while on this drug. Now he's going to be starting the other one.

I'm not sure what restrictions there are when coming off of another drug, but definitely tell him to ask about Lemtrada.

I will. Thank you so much!

You're very welcome. :)

Hi! I have MS also, was Dx 2010 at the age of 20. I'm on Tysabri and am currently JCV-. I have a medical port, so each month I'm plugged into the infusion pump and away we go.

What are the side effects of having had your thyroid nuked?

Where on the EDSS are you? I'm a 2.0 because I have some ongoing urinary hesitancy issues. They have a minimal impact on my life.

Thanks!

I don't know where I am on the EDSS scale! I'll ask at my visit next week. :) my symptoms don't fuck with my daily life much unless I'm actively having a relapse, so I'm thankful for that!

How is Tysabri working for you? I have such tiny veins that sometimes I think a PICC line would be so much easier got my monthly blood draws.

That's great. Pre-Tysabri I was a mess (during a relapse), with the urinary problems, struggling to walk, feeling like I was slurring my words. I had to lock my legs back when standing so I didn't slump to the floor, haha. Cold things touching my skin felt like sharp pain, not cold! It was so weird. Half an hour after starting Tysabri I was back to normal. New drugs are awesome.

I count myself very lucky that I'm in Australia, where we don't have HMOs (yet). My MS care is administered directly by the government. I didn't have to try cheaper drugs first, but I do pay $40 for administration.

A PICC line sits outside the skin, doesn't it? Mine sits under the skin and is totally ignorable, like so. It's in the top of one of my breasts. I'd love to get a biomechanical tattoo next to it, or at the very least, a Firewire symbol tattoo, to poke fun at the whole port thing. It's good to joke about these things. :)

I'm glad you found something that works for you! And you should definitely get a tattoo for your port. :D

You can find EDSS info online and estimate your own score. Mine's at a 0 and has only ever been as high as a 2 (visual problems).

Oh, I'll check it out. :)

What were the symptoms you first noticed before you were officially diagnosed with MS?

My first symptoms onset a week after my 23rd birthday and I was diagnosed within six weeks.

The symptoms of my first exacerbation were numbness and tingling in my lower back, slowly spreading from my shoulders to my knees. My hands were numb and I couldn't do anything with them unless I was looking at them. Even then, I had no concept of how tightly I was gripping things, and my basic motor function was shot. My mom tied my hair up and fastened my bra for weeks. My balance was shot, and at the worst I had someone put his hand on my lower back and I couldn't feel it at all.

Is it obvious that someone has MS or is it hidden? Because I have a friend who thinks he has MS but really it was a B12 vitamin deficiency.

It's not obvious. Most symptoms cannot be seen by other people and so I often get people questioning whether it's really that bad. There are some deficiencies and other disorders that present similar symptoms, so the tests are usually pretty good at narrowing it down and wedding out the answers I'm glad your friend got things figured out!

Thanks for taking the time to do this AMA! In what ways has the new drug Alemtuzumab changed your life?

I was giving myself an injection every day before the study and I would have a pretty debilitating exacerbation at least once every six months. I'd be down for about two months each time.

Now, I have a 3-day infusion when I have a flare up (usually about 18 months between flares), they're very minor, and I'm out of commission for three to four weeks.

That said, one of the side effects of the drug was Graves Disease which is a thyroid disorder. It can be managed with medication, but is not curable. The medication they treat it with gave me a pretty ugly rash so my endocrinologist and I decided to bike* my thyroid. I was radioactive for a week and didn't get any cool superpowers. :(

Edit: *nuke

If you could have picked a superpower to develop while radioactive, what would it have been?

Hmmm. That's a tough one. Maybe super strength and stamina, or super hearing and vision.

Have you tried tysabri? Got my father out of a wheelchair and hunting again.

I was given the option of drug study, in which I would be treated for free and given a small stipend to help with travel expenses (about $30 for each month), or Tysabri, which my insurance would cover only 80% of. Money was certainly a factor at that point in my life, but the numbers for alemtuzumab were just too good for me to pass up. Tl;dr: I never took Tysabri. I'm super happy for your dad though! That's awesome.

Thanks. He got in at the experimental level and they have covered most of his care. He does some advocacy things, and they are very generous. I really wish you the best in your fight. I remember my dad's flare ups and I just hate to think others are experiencing that as well. I truly believe that a cure is right around the corner. Good luck.

I am really happy to hear that! I also believe that a cure our long-term treatment will be found within my lifetime. :) Tell your dad good luck for me!

Hey OP

I didn't notice this when you first posted it (probably at work). If you come across this feel free to drop an answer.

1: My mother-in-law has MS and LOVES ME for gifting her a handled-coffee thermos for christmas. Apparently it's super easy for her to pick up and drink from. Are there any other awesome gifts you've received that help make your daily life easier?

2: Aside from my MIL, the only person who I can think of with MS is Martin Sheen playing president bartlett in 'The West Wing'. Would you say that any of that performance is genuine, or at least sheds the condition in an accurate light?

3: What's your favorite book. It doesn't need to be related to MS or anything at all.

4: If we ever meet in a bar, what kind of drink can I buy you?

1: I am very lucky that I don't have a lot of daily limitations, and the ones I do have are very minor (decreased motor function, some slightly cloudy vision, all made worse when I am too warm. and I've adjusted to them pretty well over the years). There are a lot of really simple ways you can make things a easier for people with MS. :) awesome gift with the coffee mug!

2: I never actually watched West Wing! I didn't have tv when it was on the air, and I never got around to watching it after. I have heard that it was pretty accurate though.

3: I don't really do favorites, but the most recent thing I've read was the Strain trilogy by Guillermo del Toro. I really enjoyed it. My husband gave me all sorts of shit for reading it though. :P

4: I will probably tell you that I'd love a good margarita on the rocks, made from scratch, and then pay the bill when you aren't looking. :P

I saw in an earlier thread that you have Netflix. If you're interested, West Wing is actually on Netflix, and it's a really good show overall. :)

Thanks for the tip! I'm currently bingeing CSI, and I'm only about halfway through, but I'll put West Wing in my queue for sure. :)

Sure thing! FYI, I actually shared your AMA link with a friend of mine who has MS (I'm not sure if he's a Redditor), and he said that he'd heard of the drug when it came out of clinical trials late last year. He's on something different right now, but was grateful for the information. :)

Very cool! If he has anything he wants to ask about specifically I can send you my email address.

Awesome username and happy to hear a good story for a change. In the last pic your boob looks bigger than a basketball is that real?

My tits are pretty big, but I don't think they're bigger than a basketball. I have had boyfriends that could wear the cup of my bra as a hat!

lol once one of my GFs friends was over and I started making fun of this ugly flowery hat in her bag. I still stand by it was an ugly hat but it was a pretty bra.

Yeah, most of my bras would make strange hats.

Ha-ha that's great. Anyways happy for you.

Thanks!

How do you know you weren't in the control group?

It wasn't a double blind study. Everyone was randomized into two groups, one group being treatment with an existing MS drug called Rebif, and the second being Alemtuzumab. People who were randomized into the Rebif group received a round of infusions at the end of the two year study and were offered the same extension I was offered. Anyone still in the study (i was very likely the last person accepted into the study) at this point is on alemtuzumab now.

Do you think that medication's name is jazzier pronounced backwards? (I'm trying to send you back to the 5th dimension)

It sounds like a festival in Brazil.

No one gets me.....Sucks being a DC fan in a Marvel world.

:( I generally prefer Marvel, but Batman is my favorite superhero.

My problem with Marvel is that I don't care about Peter Parker's problems, I care about Spiderman's problems. DC gave me storylines about the superhero's problems more than Marvel did. So I leaned DC.

That's fair! I just prefer the storylines that Marvel produces. That said, Kingdom Come was a fantastic graphic novel. Alex Ross is an amazing artist and he portrays middle-aged superheroes perfectly.

Serious question. I have ms and I'm on rebif for it. This "alemtuzab"... Is it a shot, or pills? Idk, if this is a way to get off of fucking needles I'd be ecstatic (subcutaneous needles still really suck when you're skinny).

So I don't have MS, but I have an auto-immune disorder that requires I get infusions, sometimes over a long period of time. I got a port put in. Ask your doc if you're a good candidate for one.

I believe a port is for intravenous drugs and what they're taking is a subcutaneous shot. Alemtuzumab is administered for 3-5 days a year apart so a port would be unnecessary. :)

Even as a fat girl I hated the injections! They hurt much less once I stopped using the auto injector though.

Rebif was actually the other drug that you could be randomized to in the study and the results are overwhelmingly greater on alemtuzumab. Alemtuzumab is a two year infusion, with the first round of infusions being administered over five days. The second year is three days, and after that it's used to treat flare ups that occur at least 48 weeks after your last infusion.

Fait enough about the auto injector (fuck rebi-stupid, rebi-slide epipen all the way). That sounds interesting. I should write that down and talk to my neurologist about it :)

It took me a while to get used to the idea of injecting without the autoject, but the welts I got with it were really bad and itched a lot.

I definitely think you should talk to your doctor! Not everyone is a good candidate, and I'm sure there are some people that are not willing to take the risk, what with the long list of possible side effects, but your specialist should be able to help you decide if it's a good match for you. :) oh, and you're going to want to ask about Lemtrada.

Have there been any changes on your ability to work or have a career?

I certainly take much less time off work! I used to be out of work for ~3 months a year. Now its two or three weeks.

The irritation must have been horrible. I came to know that the cause is not yet known. Is there any possibility that treating multiple sclerosis using drugs have side effects?

There are certainly side effects, but overall they are much, much more manageable than the MS itself. For me at least.

Hi, thanks for doing this! My older brother was diagnosed with M.S. about a year ago. Since then he's struggled with depression and mild bipolar tendencies. While he's yet to suffer an attack his bran scans do show demyelination. He's been taking copaxon and hasn't shown any further lose of white matter. However, he has now convinced himself that since he hasn't had an attack, and there isn't any progression, he has been misdiagnosed. By literally 5-10 world class specialists. Seriously. He graduated from school this may and isn't supervised the same way anymore, he's stopped his copaxone with the logic that "If I have it I'll have an attack and finally know, If i don't then I can stop with the meds"

SO my question is: Do you have any advice as to how I can help him cope with his illness and make sure he's taking his meds?

It sucks but a lumbar puncture will confirm the diagnosis.

Between 79 and 90% of the time. Some people with MS never have oligoclonal banding.

I never had a spinal tap. It's not always necessary either.

I didn't either. Didn't need it for confirmation.

Same here.

May I ask what area you live in? I would also question the diagnosis as my first attack was just described as myelitis and would not be truly classified as MS until there had been another exacerbation. May I ask what prompted them to take a scan if he didn't show Amy symptoms? What other criteria were met? I was diagnosed based on an MRI, family history, my age, and the severity/type of symptoms I was presenting.

Make sure your brother knows you care about him and want to make sure he lives the most fulfilling life he can. And sadly, there's really no way to make him take his injections if he doesn't want to take them or doesn't think he needs them. Is he currently seeing a therapist?

D.C., he's seen specialist at hopkins, GW, and others. He was showing severe fatigue, some loss of balance, and tingling in his extremities. The MRI's showed the decreased myelin. No family history, he was 20 at the time of diagnoses, I'm not entirely sure of all his symptoms he tries to stay very private with it. He was seeing someone at school but won't start with his new therapist until october for some reason.

Oh, that sounds like a flare up. Maybe not a big one, but he shouldn't write it off. If you'd like, I can give you my email address and you can forward it to him. Let him know that going off of the copaxone could cause another flare up which would come with more damage, so it's important that he not just stop talking it without talking to a specialist first.

Hi! I have relapse-remitting MS as well and recently began the oral medication Gilenya. Do you know anything about that and if so any opinions of it compared to the drug you took? Also is it possible to request being on the drug you have been taking or is it by approval for clinical trial only?

I have no personal experience with that drug, so I can't say anything.

Given all of the potential risks and serious side effects, a hospital has to be certified to administer alemtuzumab and to make sure that you are a good candidate. Absolutely ask your neurologist about it! They can help you decide if it's a good option for you, and also to help you find a hospital that is certified to do the transfusion. If you're in the PNW, my study is being done through Swedish Medical Center, and they have a really wonderful MS clinic!

Whichever treatment you're on, I wish you the best. ❤

Hey! Copaxone is useless for me (a lot of new lesions, relapses every 3 months) I'm starting Lemtrada in a few weeks. :) Is there anything I should prepare for that they didn't warn me about? I know the side effects (rash, headache, thyroid, blood, kidneys, etc), but I'm thinking about maybe little things that didn't make the list.

For example, if I brought a laptop with me, would I be able to work or do the IVs prevent mobility enough to make that infeasible (I'm going to have one in each arm).

One in each arm?!? Wtf? They run three drips (alemtuzumab, saline, and solumedrol) in my single IV.

I will tell you that I never got the rash and I think it can be attributed to my religious use of benadryl every 4-6 hours and also a zyrtec the night before. However, at the end of the day I hurt. A lot. My joints hurt, my skin hurts, and my muscles hurt. I won't let my husband touch me. My neurologist prescribed methocarbamol for me after my last infusion and it helps a lot. If you live in or near Canada, you can get it over the counter there. You will also likely get a gnarly headache that Tylenol dulls but does not eliminate. I usually bring my phone, my kindle, and a crochet project and have them put my IV in my forearm so moving my hands doesn't disrupt anything. I'm honestly not sure if you will feel like working, but you could work on your laptop if you keep it in your lap. The steroids will likely keep you up at night. Even with a dose of methocarbamol and also two Advil liquid gels last night I had trouble falling asleep and only got a few hours before waking up. It does not make me more productive, however, because I feel like shit. And you'll feel like shit for a couple weeks after the infusion.

I hope that isn't too daunting, I just want you to be prepared! Honestly though, the three ish weeks of feeling like I got hit by a truck are so worth it in the long run. Good luck with your infusion, and feel free to message made anytime. :)

Thanks for the detailed response! They told me that the second IV is basically 'just in case'. Like, if I have a reaction and they have to administer something in an emergency, the drip is already set up - otherwise, its just saline. Hopefully, if the first day goes fine, that won't be necessary anymore. :s Also, now I'm hopeful that maybe I just misunderstood them!

You said you were unwell for three weeks. Did you go back to work following your infusion, or did you need to take additional time off? I'm supposed to be starting two new jobs in Sept, and it sounds like I'll be getting the infusion the week before. One I could easily delay, the other... not so much.

I was planning on bringing the laptop, and either working, or just using it to watch TV. :) Its really not the end of the world if I can't work, but it would be nice if I could. What's the brand name for methocarbamol? I'm in Quebec, so I might pick some up in advance if I can just get it over the counter.

Last question (maybe): Whenever I've had solumedrol, I've always had everything aken out and gotten re-poked every day. I assume this time I'll leave it in. What's it like having a thing in your arm all night? Does it make it hard to sleep or shower? Can you feel it? Does it hurt at all?

Thanks so much for doing this AMA! Its really great timing for me :)

I hope it was just a miscommunication! Having an IV in each arm would suck.

I have a fairly physically active job and the infusion wipes me out pretty easily. If you're starting jobs that don't tax you physically, you might be ok. :) I do take a bit of extra time off work too wait for my system to get back to normal.

The methocarbamol I got when I was in Vancouver was just a Shoppers Drug Mart band. I'll take a picture of the box for you when I get home.

You can have them take your IV out each day and redo it, it's just not easy to find a vein for an IV in my forearm and I refuse to let them put it in my hand or wrist where it will be no good the next day anyway. I honestly don't really feel it in my arm, but I do have to make sure I don't sleep on it and I have to put saran wrap over it to keep it dry in the shower.

Good luck with your infusions! Please let me know how it goes. :)

That's good to hear! My work is 95% desk job, so hopefully I'll be okay :) Again, thanks so much for your responses! i've been a little nervous about these treatments, and its been great to hear from someone whose history with MS sounds similar to my own, and who responded well to Lemtrada.

I forgot to take a picture of the methocarbamol for you! It comes in blister packs in a flat box, and it's marketed as a back and body pain reliever. You have to get it from the pharmacy counter like codeine, but you don't need a prescription.

Another thing I should mention is that they tell you to take benadryl OR zyrtec, and I take both. That could be why I've never gotten the infamous rash, or maybe I'm just lucky.

Anyhow, I'm really glad I can help you feel more comfortable going in. It's nothing to be nervous about, I promise!

Hi OP. Firstly, best of luck this week, I am sending you positive vibes and "yeah, kick buttttttttt" thoughts from France. :)

My question isn't a question about your experience with this course of drugs, so I hope you don't mind. Naturally should you be getting questions about that topic, answer those, and only mine if you have a moment.

I've recently been experiencing some major health issues - partial temporary blindness, eye pain, headaches, dizziness, tingling and numbness in my extremities. I have gone through some tests (eye exams, MRI and such) and they have found lesions on my brain. I'm still waiting for more tests and a final diagnosis, but MS was mentioned as a possibility.

My question is this: when you were diagnosed (or more specifically, prior to being diagnosed), did you experience negativity from family/friends, and people telling you "oh it's nothing, you're just stressed" and disregarding your worry and fear? If so, how did you handle that without completely losing your rag with those people?

Thanks and, again, my very very best and strongest "woohoo go go go" vibes to you.

I didn't get a lot of negativity, but a lot of people really didn't know anything about MS and didn't think it was a big deal or thought it must be something else because I was really young and everyone they knew with MS was old and in a wheelchair. Once I was diagnosed the naysayers stopped talking shit though.

It does sound like the things you are experiencing could be MS, but I hope it's not! I hope it's something easier to manage, or even something curable. Good luck! I know you'll stay tough. ;) I can tell.

Thank you so much for the reply, it's the first time in weeks I've actually felt "sane" (if that makes sense) - someone taking me seriously.

As for tough, I aint got NOTHING on you, girl. Not only are you badass for doing this AMA, but you are rocking the shaved head and look absolutely beautiful.

I hope your day/week/month/everything goes wonderfully well. x

Anytime you need someone to talk to, please message me. :) I'll help keep you same* when nobody understands!

Edit: *sane

Aaaahhh you're awesome!

Yeah, I'm pretty cool. :)

Hi fellow Campather! How many treatments have you had? I have been in the study approx 6 years and am considering a 4th treatment. It has definitely been a game changer for me too! It's my understanding there have not been many to receive 4 doses, like maybe 5 people?

I think this is my sixth infusion! Maybe my fifth. I had two years between my final study infusion and my first relapse infusion, and about fifteen or eighteen months between the second and third relapse infusions. I'll ask my study coordinator about her other patients, but she has made no indication that I've received an unusual number of treatments.

How do you react to the infusions? Do they keep you out of commission for very long?

Not counting each I infusion as a dose, I mean total treatment? I've signed on many extensions, this is like my month 64 after the end of original study (48 months). So I had 2 infusions per initial study protocol, then a 3rd in extension, and considering my 4th.

How do you react to the infusions? Do they keep you out of commission for very long?

The infusion causes a terrible awful rash that continuos shots of benadryl will control. Lemtrada made me feel flu-ish for approx 3 months, but only really bad the 1st month, and better as time went on. In fact, the first infusion rash was so bad, all the docs around were brought in to gawk and the pics I took went on to be on their poster boards for "infusion reactions". The benadryl and prednisone IVs almost caused psychosis! Very whacky feelings.

As the treatment becomes available and more anecdotes come in, I will make a decision.

Have you had any cancer scares? Do you feel you have been checked enough for things like melanoma and cervical cancer? That is a risk that worries me.

I have not had any cancer scares. I am due for a pap smear though. I was also very lucky and didn't get the rash at all!

I'm not counting each individual day of infusion, I'm counting the initial treatments per the study (I'm starting month 72, including study and extension), and each exacerbation during extensions . So, this is my fifth treatment.

Wow! Ok. Please do ask your doc when you get a chance-I am on the west coast, got infused on the east coast, still talk to east coast, and like to get all the info I can. Sometimes the coasts conflict with the info.

Of course. :)

Thank you. Thanks for doing this.

Diagnosed with confidence today, (waiting on lumbar puncture results) sitting in the hospital since the LP this morning with orders from my neurologist for "emergency" steroid drips for a couple days due to new lesions found on most recent MRIs.

Feeling the spectrum of emotion- fear anger sadness to lastly optimism... fortunately. Your AMA and the discussion has helped a lot.

Where else would I be bored out of my gourd, stuck in the hospital? Reddit.

Sounds like the timing with the AMA was good then! I'll be thinking of you today when I'm in the infusion center today! Is this your first time with a steroid drip?

Couldn't have been better timing.

Yes, first steroid drip. Couldn't sleep a wink last night. Otherwise not too big of a deal, lots of pricking for blood work etc. Mostly just a little overwhelming to get a diagnosis

It is overwhelming, but it's also such a relief to know for sure what it is. My diagnosis only took six weeks and I was still such a weight off of my shoulders to know what was going on. I can't imagine having to wait for longer!

You'll probably want to pick up a sleep aid because the steroids will keep you up tonight as well. I never sleep well when I'm on them, and I feel really jittery and wired for quite a few days afterward. Oh, and some mint gum. It makes everything I eat and drink taste really bitter unless I'm chewing mint gum.

Good luck today! Hopefully it goes quickly and it doesn't hit you too hard. :) my thoughts go out to you from one infusion center to another today!

Some of the new autoimmune drugs coming out of the pipeline have truly terrifying price tags. Will this medicine be covered by insurance and is it affordable?

I honestly do not have an answer for that. I know that a lot of companies that make MS drugs have programs to help make them accessible to people who cannot afford them, so I've got my fingers crossed.

Edit: after reading a bit, it appears as though the cost is lower overall when compared to Rebif. Of course, it would be a larger lump sum for the transfusions and less maintenance visits vs. monthly prescription copays, more relapses (for most people) and hospital visits to have them treated with IV steroids, and thusly more office visit copays. And Genzyme is offering payment assistance for people who qualify.

Will you continue with the alemtuzumab after the drug study is done? And being a drug study, I assume the drug is considered experimental...so does that mean the drug will not be available for hospitals to use until FDA approval?

It was approved in December! Tell any friends or family with MS to ask their doctors The initial study was two years, and I am now doing an extension study and starting my seventh year.

My mother has MS. Is their anything I should know such has how i should treat her what to do and what not to do?

MS is so different for everyone, so the three things I can tell you are, 1: ask her what you can do to help her. :) what I need is different from what she will need; 2: most symptoms of MS are not visible. Never assume that it's not as bad as she said* it is; 3: just be there for her. :)

Edit: *says

My mother has had M.S. for 17 years now and has been on a variety of medicines. If you don't mind me asking what we're you on before. My mom had been taking a shot daily until about 2 years ago and the doctors then implanted a pump with a time release. But I'm not sure what medication she is on with that.

Also not to be insensitive but did you shave your head or is that a side effect of the medication, similar to chemo?

I was on Copaxone for a few years.

Alemtuzumab is actually a cancer drug (Campath when used to treat cancer), and the study is to see how it works in people with MS. It hasn't caused any hair loss, though! :) I shave my head because I like it.

You should look into a new drug that synthetic biologics is working on. Mri Data will be released shortly showing its efficacy in regenerating brain lesions.

It is called trimesta and it is used alongside copaxone.

I'm not sure I can go back on Copaxone after going off of it for the study, but I'll definitely check it out. :) thanks for the tip!

Hi, my father was diagnosed with MS about a year ago, he is currently taking 2 pills of tecfidera a day, and is also undergoing a paleo diet. I just wanted to know if this new drug was going to be more effective in helping him get cured, if he should convert to it, and I also wanted to know what the side effects of it are.

Question from him: Which company is producing this drug?

Thank you.

I had not heard much about tecfidera. How is it working for your dad? Lemtrada (alemtuzumab) is made by Genzyme, but there is currently no cure for MS. Your dad should definitely talk to his neurologist if he is interested in switching to alemtuzumab. There is quite the list of side effects that can be found here, so your dad will need to decide if it's really something he wants to do, and his specialist can determine if he is qualified. Whatever treatment he ends up on, I wish him well! Please feel free to send me a PM if you or your dad have more questions. :)

On a side note, tecfidera has worked wonderfully for me. Little side effects and no flare ups since starting 2 months ago

That's really awesome to hear! I hope it continues to work well for you. :)

A bit late to the game.... How has the treatment affected mobility (if yours was previously limited by MS)? My mom has MS and is basically stuck in a power scooter at this point.

My mobility has not been effected much by MS. A past flare up has left my left foot dragging a bit if I get too warm, have to walk very quickly, or am feeling fatigued.

It sounds as if your mom might have a progressive form of MS? Alemtuzumab has only been approved for people with Relapsing-Remitting MS, but I've spoken to people with PP/SPMS who have had good luck on Tysabri.

Thanks for answering!

She was officially diagnosed as relapsing-remitting, but we didn't talk much for several years in between (until recently) and at this point I'm sure she is probably officially diagnosed with a progressive form. I do recall she was on Tysabri at some point, but I don't think the results were great.

Glad you were able to get this treatment - good luck!!

Thank you. :) somewhere in this year* sometime mentions a drug that I'd meant to help restore mobility. I think it starts with a Y or T.

Edit: *thread. And also, derp. The comment I told you to look for was right here in your thread! I believe it's right below this comment. And the drug starts with an A.

Fellow sufferer here.

I was on avonex but gave it up due to side effects. No new attacks in two years.

My question: Have you ever played the sympathy card? I have done once or twice but I'm also genuinely grateful the damage from the attacks has not been too bad (not great though!).

I'm glad to hear you haven't had a relapse in so long! Medicine has come a long way even since I was diagnosed. 11 years ago there were just the CRABs injections, and now there are something like 12 different drugs for MS? Injections, infusions, pills, so many options!

I don't think I ever played the sympathy card because I had a hard time even talking about it for several years. I would get angry at times because people doubted how serious it was since they couldn't see the effects. Now, I have no problems talking about it, my flare ups are so minor that they really don't interfere with my daily life very much. It's the drug that kicks my ass and keeps me out of work for so long. The thing that gets me now is that for many months, there are no reminders that I have MS, no signs that I will be having a relapse, and then it happens and just kind of slaps me in the face saying, 'hey! Remember me? '

I feel ya. My second attack was a bang bang bang. Nystagmus, faulty bladder and no balance all at the same time. I've actually been refused entry to bars at 7pm as the bouncer thinks I'm drunk but it's just the balance! People also are amazed at my handwriting...yep that was the first attsck ugh

I was lucky to get on Avonex but the side effects were just too heavy. It seems they are making great progress with drugs now though. My doc just told me about a new oral one but you have to have had an attack within two months.

I have a brain scan in less than a month but I'm hoping it's all good.

Good luck to ya and thanks for the answer!

I've had several attacks that affected my eyes, and my pupils dilate at different rates now, but I've never seen that particular symptom! Have you tried using a cane for balance? It makes a big difference! Which oral medication is being recommended for you?

my pupils dilate at different rates now

I've had this my entire life (4 decades). It was investigated along with my migraines in my teens as being tumour based. Not sure if MS was the better alternative, but I'll take it. It catches people's attention a lot because I have a very light iris colour.

Mine is not noticeable to most people, and some days it's barely noticeable even to me.

Most don't notice in passing, but if it's hot out, mine is quite obvious. It doesn't bother me other than the whole "letting too much light in" thing. Super light sensitive in winter.

Yeah, it's worse with light colored eyes too.

Diagnosed with MS about a year ago, I had just turned 22. I'm on copaxone now (40mg, so only 3 shots a week), and my most recent MRI showed no new lesions.

1) What are the chances that copaxone will stop working for me? This is the first I've heard about that being a possibility.

2) What are your thoughts on this recent study and its implications for people with MS: http://www.sciencedaily.com/releases/2015/06/150601122445.htm

Thanks :)

Congrats on no new lesions!

1: I think that whether copaxone will stop being effective for you is dependent on your body and your disease. I was moving toward secondary progressive so my doctor said I needed to go for the big guns.

2: I had not read that article, but it's very interesting! I'll be really interested to see how it changes treatment and research.

Thanks for your response!

:) of course! Thanks for sharing the study with me.

Do you watch Game of Thrones?

I do not! We just have Netflix and Hulu because we refuse to give money Satan.

Hulu is owned by various flavors of satan. https://en.wikipedia.org/wiki/Hulu

D: well, at least it's cheap.

You can get it on putlocker, I would highly recommend

What's putlocker?

A streaming website

I'll see if I can do that!

Fellow girlie with MS here chiming in :) I was diagnosed with an extremely aggressive form of RRMS, borderline secondary progressive a year ago tomorrow at 24. My neuro thinks I've been sick for 10+ years. My exacerbation which led to my dx was Optic Neuritis and it was the worst my neurologists had ever seen. I've been through solumedrol, plasmapheresis, and IVIG.

To top off my hell of a year, I just found out yesterday I have Tysabri antibodies AND I'm positive for the JC virus so I have to stop the Tysabri, go back into the hospital and get plasmapheresis again to get all the Tysabri out of my system. I was hysterically crying as I LOVE it. It was only my third infusion but it's the best I've felt in years.

I'm going to my neuro Thursday and at my last visit, she previously mentioned Lemtrada. Seeing your post, I'm now very intrigued. I've tried avonex, copaxone, tysabri, tecfidera, and rebif. The side effects were absolute hell for me. I got welts so bad on the copaxone that I had to send pictures to the FDA. They were 24inches in diameter!

Anyway enough about me :), what are the worst side effects you've had compared to previous meds you've been on. I read about the cancer scares; how common is it?

Thanks for this iAMA and feel better! Well, as normal as one can feel with MS lol :)

Oh my gosh! That sounds awful.

The immediate side effects of Lemtrada (alemtuzumab) are just kind of miserable for me. I luckily never got the rash, which is something almost everyone gets. I use two different kinds of allergy medications though, and I dose as directed, every six hours, instead of just before and after infusion. After each day of infusion, I feel like I got hit by a truck, with my joints and muscles and skin all being achy and tender. I had my doctor prescribe methocarbamol after my infusion last year and it has helped a lot with those symptoms this year. I get a pretty killer headache during the infusions that Tylenol just dulls. The infuse solumedrol before the alemtuzumab and that makes me pretty shaky.

For long term side effects, I developed Graves Disease and had my thyroid nuked. I haven't had any cancer scares, but I am due for a pap smear, so who knows.

I don't want to scare you with any of this, I just want you to be prepared! Even with feeling like shit for a couple weeks during and after infusions, and having to take thyroid replacement hormones for the rest of my life, this has been one of the best decisions of my life and I hope you end up feeling the same way! Good luck, and feel free to PM me anytime you want to talk about anything. :)

Two questions: Do you drink alcohol and how do you go about drinking it when you are on injections? What is the consequence of me doing this stop and go method of treatment? It's not own purpose, it's just that my expenses have gotten so tight that I can't afford to pay for my medication every month.

I don't drink much at all, but if I want a beer after a day of infusions, I'll drink a beer. I just don't go overboard.

As far as interrupted treatment goes, you should talk to your neurologist about your financial situation because I think you're doing yourself a fair amount of harm. A lot of the drug companies that produce medications for MS have financial assistance programs to help you get your drugs when you need them. You could probably even just bust out the Google fu and find a form or phone number online. :)

Ok, what's up with the username?

I was inspired by a web comic about the creation of the unicorn. :D

I'm more confused!

Here you go!

I am now less confused.

Good!

I'm so glad to hear about a drug trial success story! I'm currently studying to be a researcher that would get these drugs from starting point to the point where they could go for FDA trials. Do you know which phase trial it was (I, II, or III)? Also as a patient, do you have a threshold for how much you want to know about a trial drug? Is it enough to say something is an antibody against protein X, would you want to know all the ins and outs of exactly how we hope it will work or is that overwhelming? Thanks!

This was a phase III trial, and I believe I was the last person admitted. When my coordinator received the email that I was approved, it was accompanied by a second email time stamped just one minute later saying the trial was closed for new patients.

I drink up medical knowledge like crazy, so I like the detailed descriptions of exactly what the drug does. I don't always remember or even process all of the details, but I like to know. I would say to take it patient by patient and ask them how much they want to know. :)

That's awesome, I'm so glad you were able to benefit from that! Thanks for your answer, I'm not usually in patient contact but when I eventually need to be, I don't want to overwhelm people in an already stressful situation. I'm really hoping enerything continues to go well for you!

You too! It seems like you want to make a difference, and I hope you get to. :)

Thanks! Struggling with grants/qualifiers/not giving up right now but it's stories like yours that make me want to push through and get that degree.

Just keep doing what you're doing. :)