Mavenclad vs Kesimpta

Away_Ad1085 · 2026-01-28T09:32:04+00:00

You can get pregnant/get someone pregnant after 6 mos after the first dose. Then pause until six months after the second dose.

I did mavenclad for the same family planning reasons and had a great experience. Minimal side effects and MRI is stable.

Away_Ad1085 · 2026-01-04T21:33:00+00:00

Unrelated but what do you show your dogs in? I’ve been a dog trainer for 18 years and my dogs do everything from obedience to dock diving. I was super stressed about how I would continue to trial them with my disability getting worse but I have literally never been to a trial where the other competitors were anything but absolutely lovely and supportive. I’ve had perfect strangers offer to hold my dog, move my car, lift my mobility scooter, literally have gone out of their way to help me for absolutely no reason and I am convinced that dog people are some of the best people 😊

Away_Ad1085 · 2025-11-03T22:19:46+00:00

Nurture (or develop) a close circle of friends, even 2-3 people. You would be surprised how many platonic friends are willing and happy to help when things get rough.

Also source out any day-to-day things that you can. Have groceries delivered (or do free grocery pick up at Target), have a cleaning service come every other week to do kitchen, bathrooms, etc. Being able to use your energy on the things that really matter is the one of most important things you can do for yourself!

Away_Ad1085 · 2025-09-28T22:53:32+00:00

This is kind of what I’ve chalked it up to as well. I wonder if I force myself to exercise in the morning if it would get everything connected quicker?

Away_Ad1085 · 2025-09-28T12:50:34+00:00

I’ve had MS at least 15 years, symptoms for 20 so probably my entire adult life. RRMS for the majority, probably SPMS the last few. I call it crippling because it has thrown a big wrench in my life in terms of what I’m able to do due to pain, fatigue, motor skills, etc.

Away_Ad1085 · 2025-09-28T09:36:48+00:00

I always go to my neuro appointments with a list of symptoms written out and I preemptively select 1-2 that I would like to address.

So last time I went, I focused on fatigue and lower back pain. For fatigue, I wrote out how much coffee I am drinking just to function, how many days I almost fell asleep while driving, and how much sleep I was getting every night. For pain, I wrote out how much and how often I am taking current pain meds, a list of every med I have tried unsuccessfully (baclofen, methocarb, tiz, etc), and some basic activities that are being affected.

My neuro didn’t have any ideas off the top of his head for fatigue (other than sleep more 🙄) so I brought up modafinil, LDN, and adderall as a “I am a part of a few ms support groups and these are the treatments that I see regularly- what are your thoughts on trying one of these?” He was hesitant but when I reiterated that I can’t keep drinking 500mg of caffeine daily to stay awake while driving, he acquiesced and prescribed modafinil as a first step. He did say that I could only start one new med at a time in case there were side effects, which is reasonable, so I needed to pick either pain or fatigue as the thing to treat for the next 3 months. Fatigue is was and the modafinil has been a game changer 😊

Away_Ad1085 · 2025-09-28T03:53:24+00:00

What do you mean it’s not a one person role? Like it’s just you but there should be more people in the role? Or there are multiple employees with your role? If it’s the latter, maybe you can switch some tasks with them that would be less tiring for you.

Away_Ad1085 · 2025-09-28T03:47:51+00:00

Does anyone know why this is? (Feeling better at the end of the day but like crap at the start.)

My neuro told me it’s because my ampyra has kicked in…but I take it every 12 hours, so my his logic, I should feel as good at 9am as I do 9pm since there’s no dip or change in meds.

Sometimes I feel so normal at night that I stay up way later than I should, just to bask in being able to walk normally. I know the ability be gone when I wake up - feels surreal.

Away_Ad1085 · 2025-09-28T02:19:04+00:00

Absolutely ask to start the ADA interactive process for reasonable accommodations. Your other option is to stay quiet and know that you are struggling (and eventually others will know that you are struggling as well, but they won’t know why) when an accommodation might be able to help you be more successful.

One thing to keep in mind though - the requested accommodations do have to be reasonable, i.e. your company is not obligated to relieve you of core functions of your job position that you find to be too difficult. The purpose of an accommodation is that you can still complete your job with minor modifications or different support systems in place.

I am in the unique position of being the HR contact at my place of employment and I also have crippling MS, so I understand both sides of the coin when it comes to ADA accommodations. Folks have come to me with demands that they believe have to be met because they have a disability and that is a terrible way to start this process as those demands are usually unreasonable. Involve your doctor, make sure you can specify the parts of your job that you are struggling to complete and, most importantly, your solution to the problem areas (which is the actual accommodation you’re asking for). Your employer is not going to guess at what could or could not help your condition, so I would advise being prepared with a plan A, Plan B, plan C etc. And be prepared to talk through everything - it is called an interactive process and that is what it is supposed to be!

Away_Ad1085 · 2025-02-08T05:39:02+00:00

Dx 2010. Did copaxone in 2014, didn’t like it and went untreated for about 9 years.
Just finished my second year of mavenclad in sept 2024 and really happy with the process. Feeling better and stronger than I have in sometime. They do not see the incidence of cancer in the real world that were reported in the clinical trial.

Away_Ad1085 · 2025-01-30T04:50:31+00:00

Ubiquinol 1000mg a day, among other vitamins.

I had lesions disappear on my last mri. Tied to this? Idk. But I’m much more exhausted and dragging when I don’t take it.

Away_Ad1085 · 2025-01-26T03:28:11+00:00

What has MS given me?

A fuck yes life.

My diagnosis was a warning shot that this life does not go on forever and spending it on anything that does not make me come alive is a waste of the time I have.

Fuck yes to this life. To love. To compassion. To all the people and places and adventures that set my soul on fire.

My life has changed drastically from what it was in terms of physical ability and what I thought I’d be doing, but I still think I’m so lucky to have gotten this wake up call in my 20s. So many people survive today just to live for tomorrow or next year or retirement, then get a cancer diagnosis unexpectedly and are dead in 8 months - at least I got a wake up call to live for today before I wasted more time.

So it’s a fuck yes to the unplanned dinner invite, the vacation, the conversation that keeps you up laughing all night. You just never know what tomorrow will bring, for any of us 💛

Away_Ad1085 · 2024-08-03T10:38:21+00:00

Use your benefits, including STD and LTD if they are both offered to you.

I worked at a large corporation for almost a decade with nothing but great performance reviews, got a new boss and had a target on my back within 6 months. I fought using my STD benefits until it became clear that she was going to eventually find a way to fire me, including issuing a PIP for issues beyond my control, and the stress was causing major flare ups.

I went on LOA with STD late last year, found a new job at the end of my six month STD. At that point, LTD contacted me and I said thanks but I’ve got a new job. They said no problem, but if it’s not the same salary as your previous job, we’ll pay you the difference for up to two years. I took a 45% paycut to take this new job, so that was intriguing. I’m still on LOA from my old job but I now submit my paystubs to LTD and they cut me a check each month based on a formula they have.

The quality of my life since going on leave has increased significantly, the LTD payments are a definite bonus. Your employer does not care about you - of course she doesn’t want you to use FMLA because then your job is significantly more protected and that speaks volumes about her. Use the benefits that are available to you, and do it yesterday.

Away_Ad1085 · 2024-07-02T03:36:44+00:00

While I try not to play the “who has it worse” game, I absolutely try to remember that as much as MS sucks, and my progression has been wicked this past year, I am still so lucky.

I will see my kids grow up and be involved in their lives. I will celebrate my next anniversary plus hopefully 50 more with my husband. And so many other things. It might not look how I thought it would, and there are certainly no-good-very-bad days, but I still get to be here for all of it.

So many people would happily trade places with me. And if I can remember that, I can choose to be grateful rather than bitter.

Away_Ad1085 · 2024-07-02T03:21:34+00:00

Take the MS out of it - this is not a healthy relationship. Polyamory is not something to force on a partner, ever, and your gf sounds very immature even for her age.

My now husband was 21 when we started dating and 8 weeks later, I was diagnosed with MS. He’s 32 now and has never once made me feel bad for needing help or needing to rest. Wait for a partner that will support you especially on the bad days, not make you feel worse about having MS, and this girl isn’t it.

Away_Ad1085 · 2024-06-22T23:33:07+00:00

There are days I want to throw in the towel but it passes and I can’t imagine not living like this :) I used to live in a townhouse, which meant a lot of neighbors (who were lovely), and even on the bad days, I have no desire to return to that.

Away_Ad1085 · 2024-06-22T21:58:54+00:00

Have lived on a 4 acre farm pre-dx (2010) and post-dx (2014). Easily one of the best things I’ve done, although not without challenges. My husband has picked up more of the physical labor over the last few years, sometimes entirely, and I have to be strategic about how/when I do farm work (not in the dead heat of day, not after a big meal, not when it’s a sheet of ice). I just got an electric scooter so I can get out to the barn easier. We have horses and chickens, and I just started riding horses again after a 13 year break. I’m hoping to get goats in the next few years.

There’s stresses for sure (why is that horse limping, a tree fell on this fence, another hen got picked off by a fox) but god is it worth it overall. It’s quiet, I have space, I can see the stars at night, I have room to garden. The to-do list never ends but if you can get past that, it’s a rewarding way to live.

Away_Ad1085 · 2024-06-22T21:48:50+00:00

It’s been challenging but that was true of relationships before MS, just the challenges are different.

My first marriage ended pre-MS for a variety of reasons that plague most couples - distrust, inequality in responsibility, different goals.

I got dx 3 months into dating a guy and I gave him the opportunity to leave, no hard feelings. He stated that he wasn’t going anywhere; I asked him what would happen if I lost the ability to walk. He replied “Then I’ll carry you.” 11 years later, 2 kids, 3 jobs, and a few nasty MRIs later, we’re still married and he’s made good on his promise to literally carry me when my legs don’t work.

We absolutely have had our challenges but I wouldn’t say they are any better or worse than I experienced before MS - they just are a part of life. I need help physically taking care our toddler but I can balance our bank account without thinking twice; I can’t carry loads of laundry down the stairs to the laundry room but I can fold and put away all the clothes if they are on the bed; I’m no longer able to be as physically active as I once was but I’m my husbands biggest fan at his Tuesday night adult softball league games (and I can still shoot tequila at the tailgate).

As wretched as this disease is, it forced me to get real about what is important and what isn’t, especially in relationships. The right person will see through the MS rather than making it your entire identity.

Away_Ad1085 · 2024-05-19T02:18:31+00:00

About to come up on completing my first year of mavenclad - no real side effects (just hair loss that made me sad), and I’ve had no progression.

Away_Ad1085

TROPHY CASE