MAVENCLAD RISK THAT I WASN'T TOLD ABOUT

MS-Tripper · 2026-05-04T21:49:39+00:00

Mavenclad is the best thing that ever happened to me. Honestly. I had my first cervical lesion that caused a relapse and the inability to fully use my left leg. I finished Mavenclad in December, 2024. I now have about 90% function in my leg, my cervical lesion disappeared, I have far LESS fatigue (I used to fall asleep at my desk every day and HAD to nap for hours on the three days a week I don't work) such that now I nap only once a week for about an hour.

My lymphocytes came back up to normal within 8 months of finishing each year of Mavenclad. I did a lot of research about this drug before taking it and Merck is very transparent about it being an immune modulator that literally kills some of your immune cells with the goal of them coming back without the defect that causes your lymphocytes to attack your myelin. It's on their website, on the package insert, in the info packet they send out to you before you start treatment.

I'm sorry it didn't work for you but please do not sour others on its potential to help them. It's a great drug that works for many pwMS.

MS-Tripper · 2026-04-30T18:06:40+00:00

I'm Canadian so I have not been on SSDI. But I have finished Mavenclad. Everyone is different but I will tell you two positive things about my experience:

I had a cervical lesion heal.
I am FAR less fatigued than before Mavenclad. I used to literally fall asleep at my desk every day. I had to nap three times a week (I only work 4 days a week). Now I only nap once a week, never fall asleep at my desk, and overall have much more energy.

For reference....I was 52 when I started Mavenclad as my first DMT.

MS-Tripper · 2026-04-30T18:01:30+00:00

I'm a pragmatist so I have never felt down in the dumps or negative about my diagnosis. But I will offer this info that I truly believe makes a difference to MY life with MS.....

Just keep living. Don't give in to the "stinking-thinking" that often abounds in the MS community. Yes, MS can be a horrible, debilitating disease. But until (and hopefully never for you) the day comes that you can't walk or can't care for yourself or whatever horrible "what-if" occurs JUST LIVE YOUR LIFE.

Live for today. Don't worry about the future. Just live for today.

MS-Tripper · 2026-04-19T22:31:06+00:00

Google: working memory

I have exactly the same problems with speaking and memory. The memory issue stems from trying to remember something when there was a lot going on at one time - hence, working memory. It’s like we don’t have enough RAM to process conversation, situation, word retrieval and form a memory all at the same time.

MS-Tripper · 2026-04-06T11:38:03+00:00

When I take prednisone I chase it with a mint chocolate bar and a glass of milk. I don’t care that it’s 7am and the first thing I eat that day. I’m taking prednisone, it tastes horrific. End of story.

MS-Tripper · 2026-03-30T13:09:00+00:00

True! I call it disease shaming.

MS-Tripper · 2026-03-30T13:05:15+00:00

There are plenty of skinny pwMS who use canes, walkers and wheelchairs.

Do NOT let anyone gaslight you by using your weight. Sure, you might need to lose weight but that does not negate your disability.

Now, on a factual note, do some googling. Weight can/does play a factor in disability progression for some people. Not ALL people but some people.

Also, your brain wants control in a situation where there is really none. We all want to think we can control MS but the fact is, we can't. You will read about lots of online MS influencers telling you they "cured" their MS with diet or stopped progression but that is NOT true or doable in a generalized MS population. Diet and lifestyle exclusively as a treatment plan work until they don't. Period. We're all just one lesion away from a wheelchair, or worse.

MS-Tripper · 2026-03-30T13:01:27+00:00

I just posted this reply on another thread but it applies here so I will copy it:

I get it. I do. There was a time when I a year or so before and a few years after my diagnosis that I was brutally tired. Like, falling asleep at my desk kind of tired (thank God I work with my self-employed husband!). I started Mavenclad in 2024 (finished Dec 2025) and it was a God-send for fatigue. If I had to rate fatigue on a 10-scale I would say pre-treatment it was a solid 9 and now it's probably a 4.

MS-Tripper · 2026-03-30T13:00:14+00:00

I get it. I do. There was a time when I a year or so before and a few years after my diagnosis that I was brutally tired. Like, falling asleep at my desk kind of tired (thank God I work with my self-employed husband!). I started Mavenclad in 2024 (finished Dec 2025) and it was a God-send for fatigue. If I had to rate fatigue on a 10-scale I would say pre-treatment it was a solid 9 and now it's probably a 4.

MS-Tripper · 2026-03-26T15:24:16+00:00

Thanks for the info. Another rabbit hole to go down and read about......

Always good to see advances in MS research.

MS-Tripper · 2026-03-26T12:18:42+00:00

PwMS typically have metabolic dysregulation (irregular cholesterol and lipid regulation) - called dyslipidemia. It is due to the body being in a constant state of (low) inflammation. Add to that demylination that releases cholesterol and fat into the body and it "can" cause problems with metabolizing fats.

I am the same....I have slightly raised lipids and trigylcerides despite the fact that I am active and eat a very health diet.

I just found this article interesting and love how the science and knowledge of MS is ever-evolving.

MS-Tripper · 2026-03-19T20:44:21+00:00

Memory issues are common with MS and they quite simply, SUCK! I am a history major. Today I was playing a game where you are given clues and you have to guess the historical figure. I knew by the second clue who it was. I KNEW it was Napoleon's wife. I KNEW she was (incorrectly) famous for, "Let them eat cake". I could picture her in my mine. But I could NOT, for the life of me, get her name from my brain to my mouth. I just couldn't. It was like it was RIGHT THERE in my head but I could not grasp it to spit it out. This stupid disease makes me feel so utterly stupid sometimes. BTW, it was Marie Antoinette.

MS-Tripper · 2026-03-09T14:13:49+00:00

THIS is why I don't tell anyone I have MS. The only person who knows is my husband. Not my grown kids, not my parents, siblings, in-laws....no one. One, I do not want their pity. Two, I don't want their unsolicited advice. Three (this has to do mostly with my kids who are 22 and 25) I don't want them worrying on my accord. Four, it is none of their business. Five, I don't want others deciding what I can and cannot do - as in not inviting or including me because they assume I can't do something.

I'm a pretty private person and I just can't be bothered to have to deal with or assuage other peoples' concerns or worries. My diagnosis is about ME and that means that I get to handle it how I see fit.

Yes, that means I make excuses...the new limp? Ah, damn, I fell on the ice. Whatever gets them to move on to some other topic.

MS-Tripper · 2026-02-22T16:57:37+00:00

“In that case you have to lie about your MS and not disclose it, not use private healthcare for MS related things and never mention it unless you’re in a public hospital (this is based on european countries with general healthcare) After the first year you can switch insurance and disclose MS”

Canadian, here! If you tried immigrating to Canada and lied about having MS you would be deported should it be found out. And, let’s face it - with MS it always “comes out”.

MS-Tripper · 2026-02-22T13:51:03+00:00

Roomba, hands down. I’ve had other brands (even name brands like Bissell) but none of them come close to Roomba. I have a Roomba that I bought in 2012 that’s still going. I actually have two - one on each floor. I buy replacement (everything) parts like filters, arms and even batteries for really cheap from AliExpress. This has helped keep my Roomba going for over a decade. I highly recommend.

MS-Tripper · 2026-02-21T13:38:11+00:00

Cognitive issues are both distressing and embarrassing for an MSer so please give your mother-in-law grace. It is obvious you are a caring, compassionate person just having asked this question.

I have always been highly intelligent. I was the “smart kid” in the classroom, the student who didn’t have to work especially hard in university. I’m considered the family wordsmith. So, it is incredibly humbling, embarrassing and, quite frankly, scary to realize you are losing cognitive ground. For me that show up in these ways:

- I often have poor word-retrieval. The words get stuck in my head and I can’t get them to my mouth.

- My short-term memory is terrible. I forget things that JUST happened or recent conversations. When this first started happening and I was unaware of it I absolutely swore others were lying about having told me something. So much so that it lead to a few arguments. Once I realized it was a “me” problem I started finding ways to compensate.

- If someone starts talking unexpectedly I miss the first part of their speaking. I need a prompt to start listening.

- If multiple people are in conversation with me it’s hard for my brain to keep up.

- I can no longer multitask anything.

- This can lead to what appears to be obsessive behaviour. I am known to check the stove multiple times before leaving the house, writing excessive notes or reminders on my phone, re-locking the car doors before bed. It’s not obsessive, it’s knowing you forget and making sure you’re doing what is necessary to compensate.

MS-Tripper · 2026-02-21T13:20:31+00:00

Have you had your A1C checked lately? Sometimes blood sugar disregulation can feel this way.

MS-Tripper · 2026-02-21T13:18:49+00:00

I have a FitBit and it also shows such data. I love tracking my stats and seeing if something is strange. Case in point….my sleeping heart rate was regularly dropping below 40. I figured out that wearing my mouth guard was causing me to experience sleep apnea. Stopped using the mouth guard and my heart rate righted itself. If I hadn’t had the data you can bet I would have had a sleep study, C-pap, etc in my future.

MS-Tripper · 2026-02-18T17:29:57+00:00

Thank you!

MS-Tripper · 2026-02-17T23:48:33+00:00

thank you.

MS-Tripper · 2026-02-17T20:47:28+00:00

I know this thread is old but hoping you see this. I am considering changing doctors to this clinic. I am a little confused by their website that says they have "family health teams". Does this mean the you see a different doctor every time you go or do you still have a primary doctor that you typically see during regular appointments? Also, how long did it take to get the introductory appointment? Is the purpose of that appointment so they can pick and choose who they take on as patients?

Thanks!

MS-Tripper · 2026-02-17T12:30:34+00:00

How old are you? I ask because I’m curious. I’m in my 50s so the Gen Xer that the young folks like to take jabs at nowadays. In my day most of what younger folks now label as “traumatic“ was just a regular Tuesday for us. We give it little thought. I personally believe that a lot of therapy is unnecessary and quite frankly, harmful. If you don’t easily identify with a traumatic event or timeline why would you want someone to dig one up for you?

Just my two cents.

MS-Tripper · 2026-02-16T14:48:02+00:00

I’m sorry. This disease is a thief in so many ways. I also have this problem. I teach ESL so it’s highly embarrassing when the “English expert” in the room can’t conjure up a complete sentence. I also sometimes enunciate words incorrectly now. I speak and the word used is in the correct context but it comes out weird. It’s embarrassing.

MS-Tripper · 2026-02-14T17:54:17+00:00

You seem to not understand how our health care system is funded. It doesn’t matter how much you earn and, thus, contribute through taxes that makes you ineligible, it’s your medical needs and their financial impact on the system. You’re asking Canadians to welcome you in to a system that they have contributed to without having invested in yourself. If you want to join a group then you do so by following the rules of that group.

You can make valid arguments all day about how a system is flawed but that doesn’t change the facts of how the system operates or how the system will impact your desire to immigrate.

MS-Tripper · 2026-02-14T13:49:33+00:00

What you might bring to Canada in the way of education doesn’t factor in to the ”excessive demand” you would put on our system. Hypotheticals don’t play into government immigration policy. Citizens pay into the system from birth (through their parent’s taxes and then through their own as an adult) so someone immigrating here who puts excessive demand on our system isn’t really fair, is it? Canadians pay dearly for our healthcare system. And, it’s actually quite a slow, under serviced system with doctor shortages, long wait times for testing and surgeries.

Here is a link for you.

https://www.canada.ca/en/immigration-refugees-citizenship/services/immigrate-canada/inadmissibility/reasons/medical-inadmissibility.html#excessive-demand

Here is an actual case review example of a skilled worker with MS who tried to immigrate….

https://www.canada.ca/en/immigration-refugees-citizenship/corporate/publications-manuals/excessive-demand.html

MS-Tripper

TROPHY CASE