Edit: I have gone back and added in some details that I've remembered that might be helpful, so if you've read this in the past few days you may notice some changes. You are not crazy.
A quick disclaimer: I'm sure everyone realizes that I may have made mistakes, and that recommendations for taking a particular treatment probably evolve over time. So be sure to contact your doctor or EMD Serono/MS Lifelines if you are using Mavenclad and you have any questions. Not intended as medical advice, etc. Here is my experience.
I've been planning on starting Mavenclad for months now, but today is the day! I want to post my experiences as I go. Because it's difficult to track down multiple posts by one person on a given subject, I decided to add new information in the form of edits added below the last entry. This will keep the various entries together in one post.
I decided to try Mavenclad because I've gotten worse, particularly spasticity, on Ocrevus since starting in January of 2022. I also had what for me was a bad relapse last year. I also like that if things go well, I won't be immunocompromised the whole time I'm on it. So far, I've done research on the MS-selfie blog, talked to my doctor, and talked to MS Lifelines about keeping the tablets at room temperature, not touching the tablets more than necessary and washing my hands afterwards, and not taking any other meds by mouth within three hours before or three hours after the Mavenclad. I also need to take it at the exact same time every day, and I'm supposed to drink a ton of water to avoid getting bad headaches. I should also mention that it's considered an IRT, or immune reconstitution therapy, rather than a DMT. This means it is taken for five days, then none are taken for the remainder of the month. The second month, meds are taken again for five days. This kills off certain B and T cells and lowers your white cell, or lymphocyte count temporarily. The idea is that when those cells repopulate, they'll be nicer and more well-behaved - and not attack the brain or spinal cord. I will let you all know how it goes!
9/2/24
I took my first dose (which was two tablets based on weight) this morning with a full glass of water as directed. I chose to eat breakfast first. I've set up hourly reminders to drink, as keeping your brain hydrated is supposed to stave off headaches. I really didn't notice much in the way of side effects. MS Lifelines sent me a text an hour before my dose was due to remind me to take it, which is nice. Since I'm taking it pretty early in the morning, I've set an alarm on my phone to wake me up just before it's time. I should also mention that the tablets are cytotoxic, meaning you're only supposed to touch the tablet(s) with dry hands, and wash your hands well after taking it. Definitely don't touch a tablet and touch your eyes, face, or anyplace else. This makes some patients, including me, not want to handle them. The MS Lifelines nurse gave me a helpful tip, which is to hold the blister pack over a clean, dry glass, and push it/them through the pack into the glass. You can then use the glass to put it in your mouth and swallow the tablet (no cutting or crushing the tablet(s)) This way you not only don't have to touch your medication, but it makes it harder to drop the pill(s)! I was sold on this method. I refer to tablet(s) because the dose is based on your weight, so the number of tablets will be different for different people.
9/3/24 This morning, I got up, had some oatmeal to reduce the risk of any nausea, and took my Mavenclad with the recommended full glass of water, the recommended three hours after the last time I took medication, and 24 hours after the time I took it yesterday. So far, so good.
Then I goofed. I had fallen asleep, and when I woke up, I heard my alarm that was to remind me to drink water. I got it confused with the alarm I set to remind me that it was safe to take my meds and vitamins, even though they sound different. So I took my meds and vitamins an hour before I was supposed to! I called MS Lifelines and admitted my mistake. The nurse said she had to document it, and asked for the lot number and expiration date on the Mavenclad box. I'm thinking, Document it for what? What have I done?
She said not to worry, but to call my doctor if I felt weird. Oh, crap! And I did start to feel weird; lightheaded but with a lot of pressure in my head, especially the front of my skull. I felt pretty embarrassed, but I called my doctor. He said that it shouldn't matter that much, that the three hour waiting period was to ensure the Mavenclad was absorbed. He said that if I felt lightheaded, I should drink more water, and electrolytes. I have been drinking a ton of water already, because I was told it was critical to prevent headaches, and I have been adding an electrolyte powder to my water four times a day, per the instructions on the electrolyte powder. But if my doctor thinks I need more water, then I'm off to drink more.
9/4/24
The rest of yesterday went pretty well. When the Mavenclad kicked in yesterday (I've been taking it at seven am), I got kind of a head rush with pressure in my head, and I felt really impaired and sleepy. But it didn't Iast for more than an hour or two. Then I felt lightheaded, but I felt that way before I started the Mavenclad (from tight neck muscles). My thoughts were fuzzier, my short term memory nonexistent, I was more tired, and my legs felt noticeably weaker than usual. I tasted stomach acid in the hours right after taking the Mavenclad, but I didn't feel nauseated. That can be a side effect for some people, but thankfully that hasn't happened so far. I feel like I should mention that I am taking a lot of medications that cause drowsiness and brain fog, and because I'm excruciatingly sensitive to medication, this isn't the first time I've added a new medication and felt completely impaired. It happened with Ampyra and with lurasidone (a drug for bipolar disorder that was prescribed to me off label for depression). So if a new drug hits me like a ton of bricks, it doesn't mean that it will happen to you. Overall, I would not be able to continue taking Mavenclad if it was a daily med, but thankfully, it's not. If every day was like yesterday, I could do five days no problem. 😊 Today was much the same: tasting stomach acid, feeling more fatigue, being forgetful, thinking more slowly, and my legs feeling weaker. I only felt the head rush with weird head pressure, and the beginnings of a headache, in the early evening. I suspect I may have been slacking off on my water consumption a bit. The pressure died down after I had several more glasses of water. I am really glad that I got the electrolyte powder before starting the Mavenclad, because I feel like drinking this much water might cause an electrolyte imbalance. But again, while the experience was not something I'd want to have happen every day, it was not terrible. Three days down, two more to go!
9/5/24
Today I felt super impaired, and couldn't remember what I was doing from one minute to the next. I canceled a medical appointment I had because I just felt out of it. Still no nausea today and no bad headache. One more day to go!
9/6/24
Last (Fifth) Day of year one, first treatment week! After yesterday's brain fog and sleepiness, I'm happy to be taking the last dose today. I happened to wake up at four am, and I decided to drink a big glass of water before going back to bed, to be more hydrated for my dose at seven. It felt like when I took it, it didn't hit me as hard as far as head rushes and head pressure, so it might be a good idea not to take your dose first thing when you get up, to give yourself a chance to "prehydrate." Today was slightly better than yesterday as far as brain fog, and I made it to two medical appointments. I did get confused about what I was supposed to be doing to prepare for one of them, which I found embarrassing, but it worked out okay. I've been having a bothersome symptom which I was not confident mentioning earlier, because it's an existing problem and I initially had no way to know if it was from the Mavenclad. I have mild rosacea, which makes my cheeks red, and makes my skin burn and feel dry and tight, especially if I get sun. But it has been getting redder and more uncomfortable, so I suspect that it is a side effect from the Mavenclad. The drug is supposed to be out of your body in ten days from the time you take it, although the effects/mechanism of action continues for months. I'm hoping that it will feel better once ten more days has passed, but I may be calling my dermatologist. I did find an article about Mavenclad and adverse skin events although it doesn't mention my particular problem:
multiplesclerosisnewstoday....
9/11/24
Today, I still feel the same way I did five days ago. I'm looking forward to when the Mavenclad leaves my system, in hopes of feeling more normal again.
I do realize that it will continue causing changes for months to come, though.
Other Resources include:
* EMD Serono Mavenclad website:
* Mavenclad Educational Events:
(Which come with a chance to learn, ask questions of a neurologist, and have really fancy dinners that are free)
You will see that there is a black box warning for cancer that the FDA required Serono to put on it because there was a higher rate of cancer in the Mavenclad group than the placebo group during the early clinical trial. I urge you to talk to your neuro if you are considering Mavenclad, but it's my understanding that this was not the case in later trials. The types of cancer varied, too, which you wouldn't expect if the Mavenclad was causing them. It is recommended that Mavenclad patients stay on top of their regular cancer screenings.
* Mavenclad Facebook Group:
A private Facebook group for Mavenclad patients. I have not seen it, as I have held out this long without getting a Facebook account, and I don't want one now. As always with internet sources, take them with a grain of salt, including me. Ask your doctor about any questions you have. m.facebook.com/login.php?ne...
*MS-Selfie Blog
Professor Gavin Giovannoni's informative blog about managing your MS has many entries about cladribine (Mavenclad), as it seems they have used it more extensively there than in the US. You can read the blog for free, but you must email Prof G, as they call him, and simply ask for a free subscription. This blog is more technical than other resources, but it's a really great source of information from a brilliant MS doctor.
The email address to request a free subscription is at the bottom. You will have to provide your email.
Use the search bar to search for cladribine.
There is a 23 to 27 day window from the time you take your first dose, in which you can start your second treatment week of year one. I will be starting that course in a few weeks, but I may be adding further information before then, depending on what I experience. I am planning to keep drinking a lot of water for a while, since it's my understanding that the Mavenclad stays in your system for about ten days after you take it.
Newly Released Real World Mavenclad Study
Something I noticed today
Another MSAA News Update - FDA Approves Mavenclad® (Cladribine) Tablets
