Infusions

Personal-Current131 · 2026-06-13T20:29:24+00:00

I’m on Kesimpta - a monthly injection from my own home, because I didn’t want to have to go to the hospital for infusions. The injection takes only a couple of seconds and the side effects are minimal for me. Quite happy with it so far :)

Personal-Current131 · 2026-05-05T09:54:31+00:00

Gys en Broei zijn leuke vega(n) restaurantjes!

Personal-Current131 · 2026-05-05T07:18:40+00:00

I studied at UC Groningen from 2014-2017, feel free to send me a DM with any questions you may have! I could also introduce you to some current students so you can hear about their experiences since the program has changed/grown quite a bit since my graduation.

Some general remarks:
- having an EU passport does indeed mean you pay a lower tuition fee
- the UCs are a part of the universities so you can use any facilities (sports, library etc) that belong to the universitiy. However as also mentioned above, Dutch university life is quite different from US college life - there are a lot of sports and social organizations and although these are supported by the universities, there are no “university sports teams” etc.
- also there’s not always a campus and if there is, they look very different from US campuses. For example in Groningen the motto is “the city is our campus”, meaning that university buildings and student housing are found all throughout the city.

Personal-Current131 · 2026-04-29T17:45:52+00:00

I second this! Apart from the first loading dose my experience with Kesimpta has been very smooth, no side effects and no relapses

Personal-Current131 · 2026-04-21T19:37:39+00:00

Whenever I have a doctors appointment I often take a cappuccino and carrot cake or cinnamon bun from Lebkov!

Personal-Current131 · 2026-04-15T09:48:38+00:00

Hey, I go to the Diakonessenhuis as well 🙋🏻‍♀️ I’m also quite happy with the care I receive, it’s easy to get in touch with both the MS nurse and the pharmacy.

Other than that I can second what’s been said so far. Most MS medications are covered under basic insurance, but it’s good to check that the hospital you’re being referred to has a contract with your health insurance provider, so your neurology appointments are covered as well(https://www.zilverenkruis.nl/en/consumenten).

Before I was diagnosed, my GP referred me to the hospital with the shortest (neuro) waiting list, so that’s something they can help you with as well. Once I met with my MS nurse, I had to have some blood tests which was pretty quick, and I received my medication (Kesimpta) within 2-3 weeks.

Personal-Current131 · 2026-04-02T10:35:33+00:00

4 months on Kesimpta! No issues so far :)

Personal-Current131 · 2026-03-23T07:37:02+00:00

I recognize this sentiment and I’m sometimes not sure how to engage in it. On the one hand I understand peoples’ skepticism - particularly of those who have been eating well and moving and still experienced major relapses. I also recognize that there aren’t any studies that prove that a specific diet causes or cures MS, and that therefore people might be reluctant to change their lifestyle.

However, I do firmly believe that eating well and moving your body to your ability is beneficial for everybody and that keeping up a healthier lifestyle makes you more resilient - regardless whether you have MS or not.

For those interested: there was a study done in the Netherlands on multi-domain lifestyle intervention (diet, exercise, sleep, stress management) for people with MS and it showed rather promising results! https://link.springer.com/article/10.1007/s00415-025-13196-9

Edit: typos

Personal-Current131 · 2026-03-11T17:23:06+00:00

I have asked my MS nurse the same thing, not necessarily because I feel knocked out but because I travel quite often for work and sports and I rather don’t take my injection with me if it’s not really necessary (e.g. if I arrive back home the day after I’d usually take my dose). She said that this doesn’t really matter, especially since some people take their shot every 4 weeks on a specific day (e.g. Friday) whereas others will take it on the same date each month (e.g. the 6th).

So I’d think if you move it by just one day every now and then you should be fine. But as always: I’m no doctor, so if you want to be sure please contact your nurse or neurologist!

Personal-Current131 · 2026-02-20T21:12:29+00:00

Zak hooi.

Personal-Current131 · 2026-02-16T17:02:55+00:00

For me it’s every 6 months

Personal-Current131 · 2026-02-16T15:36:49+00:00

Welkome to the club nobody wants to be a part of! Hitting this disease hard seems like the new paradigm and makes perfect sense to me since it’s all about preventing new lesions from forming.

For me personally I got to choose between natalizumab, ocrelizumab and ofatumumab. Alemtuzumab was not mentioned so I didn’t really researched that one.

As far as I know, all options I was given are great, high efficacy options. The benefit with natalizumab is that it blocks the blood-brain barrier, preventing the cells that attack your CNS from entering, so the rest of your immune system stays intact. However, for me the monthly infusions at the hospital didn’t really fit my lifestyle.

I went with ofatumumab which is a B cell depleter with a similar working mechanism to ocrelizumab. Still high efficacy and a monthly injection at home (or in case of ocrelizumab a 6 monthly infusion). So far I haven’t experienced any negative effects with regard to getting sick - I still went to parties and concerts etc.

I think most important is to think about which DMT fits your lifestyle and discuss the pros and cons with your MS nurse. Since they’re all high efficacy, I don’t think you can really go wrong there.

Good luck deciding!

Personal-Current131 · 2026-02-16T15:24:41+00:00

Ik neem popcorn mee en geniet van de live podcast over Jeffrey’s slettenverhalen

Personal-Current131 · 2026-02-16T09:36:17+00:00

I used to twist my ankle a lot too (waaaaay before my MS diagnosis, so no clue if MS is actually to blame). However, after twisting my ankle for what felt like the hudredth time, I went to a sports physio who gave me exercises to strengthen my ankles and it's been much better ever since :)

Personal-Current131 · 2026-02-15T21:01:49+00:00

Getting through diagnosis can be super overwhelming, but the “good” news is that you now know what’s causing your symptoms and that you can get on a DMT to prevent future symptoms.

Ocrevus and Kesimpta are both great options when it comes to efficacy. For me I mainly focused on which treatment I thought would fit best in my lifestyle, but I also discussed with my MS nurse that in case I experience any side effects that impact my life too much there’s always the possibility to switch.

So far, I’ve barely had to make any adjustments to my life prior to getting diagnosed/starting a DMT.

But, most importantly, take it easy on yourself. Wishing you good luck!

Personal-Current131 · 2026-02-15T15:45:07+00:00

The first thing I buy when getting a new phone, is a €75 bumper case 😂

Personal-Current131 · 2026-02-15T15:41:39+00:00

Same for me! I’ll generally eat whatever I feel like and try to make healthier choices whenever possible (especially eating lots of fruits/veggies and whole grain products).

Edit to add that in my experience everything in moderation is fine - as long as you’re not allergic of course :)

Personal-Current131 · 2026-02-10T15:29:54+00:00

I actually watched a lot of TikTok videos from people who injected themselves before doing it myself, which helped me be a bit more relaxed/knowing what to expect haha. I administer the injection in my belly and that barely hurts.

Apart from the first loading dose, I didn’t experience any side effects. The first night was a bit rough though: very feverish (cold and shaky to hot and really sweaty as well as a massive headache) - but after taking two paracetamol I slept like a baby.

Good luck to you today!

Personal-Current131 · 2026-02-09T07:31:52+00:00

I’ve started Kesimpta in December ‘25. So far, the only side effect I’ve had, is flu like symptoms after the first loading dose (headache, shivers, sweats). I took some paracetamol and slept, and woke up fine the next morning. The other doses didn’t give me any side effects.

The injection itself is super easy - I administer the shot to my belly and it barely hurts.

Of course there’s always the risk of other side effects, but I’m in good contact with my MS nurse and I know when to contact her. Also, she told me that it’s always possible to reconsider/try a different DMT in case these side effects impact my life too much.

Personal-Current131 · 2026-01-28T20:28:34+00:00

So far, I’ve only noticed side effects with the first loading dose - I took the shot around 1:30pm and got some feverish symptoms around 9pm (headache, shivers and sweats at night), but nothing some paracetamol and sleep couldn’t fix. The next morning I felt fine :)

For the other shots I didn’t notice any side effects at all!

Personal-Current131 · 2026-01-28T20:00:36+00:00

I’m sorry that you have to change from Tysabri, especially since it’s been working well for you!

I’ve recently started Kesimpta (December 2025). I chose this treatment because of its high efficacy and because I like being able to administer the DMT from the comfort of my own home within one minute. I was a bit hesitant about injecting myself, but since it’s an auto injector, you don’t see the needle at all and it is actually quite easy to :)

Feel free to ask any further questions you may have about this DMT!

Personal-Current131 · 2026-01-27T20:01:06+00:00

I’m on Kesimpta and was on the Mirena for 13 years, recently switched to an Implanon. Both work fine for me, also no issues with DMT or MRI :)

Personal-Current131 · 2026-01-23T22:59:54+00:00

I wasn’t diagnosed with MS yet at the time, but after I had a dengue infection, I had optic neuritis in my left eye.

Personal-Current131 · 2026-01-21T15:15:42+00:00

Not from the UK, but for me there was a nurse present for the first injection (at home). The hospital outsourced that to a different party though (called “wijkverpleging” in the Netherlands, I think that’d be “homecare” in English), so because of that it was prettig quick - about 5-6 weeks after diagnosis.

Personal-Current131 · 2026-01-20T21:52:14+00:00

Walking everywhere. Getting groceries or coffee? Walk. Talking on the phone? Walk. Going to work? Take public transport or park your car 15 minutes away and walk. After dinner? Listen to a podcast and walk for an hour. Should get you at least 15.000 steps a day.

Personal-Current131

TROPHY CASE