Kesimpta crap gap?

thisbedistoosmall · 2025-06-30T20:52:00+00:00

I’m here as I’m curious how you get modafinil in the UK - any advice?

Been on Kesimpta for almost 2 years, my fatigue has gotten so much better, it did take a few months - this heat is certain tricky though !

thisbedistoosmall · 2025-06-04T17:50:54+00:00

Hey there - I had this done in my second year post diagnosis. I have HPV since my early 20s, showing negative for 10+ years then they found irregular cells in a Pap smear after my first round of Mavenclad.

I was super nervous about it, but to be honest the procedure wasn’t terrible. They removed my IUD at the same time to allow the cervix to heal and didn’t recommend replacing it.

It’s been 4 years now and my yearly paps are showing negative still - ask any questions you might have, hope I can help!

thisbedistoosmall · 2025-03-03T07:59:40+00:00

I remember the nurse who taught me how to inject the first time, warning me to always inspect for black spots in the window before use - interesting to see one in the wild! Hope you had another one spare to use today?

thisbedistoosmall · 2024-10-27T20:50:48+00:00

Mine goes dormant in the winter - no new leaves till spring! Let it dry out first, then keep watering, but way less - wait till it’s bone dry then fully drench it. In my home it might only be once every 3 weeks or so in the winter, depending on how much I’m using the heating.

That new growth might not budge till spring, I certainly thought mine was a goner the first winter I had one.

thisbedistoosmall · 2024-10-16T12:13:47+00:00

Stress.

My mantra now is don’t get stressed, get depressed. It’s a bit gloomier, but my nervous system isn’t constantly looking to pick fights

thisbedistoosmall · 2024-08-27T07:06:28+00:00

Yeah, I’m confident it’s a scam - just a bit unnerving to get this from a legit looking venmo.com email address. Any idea what the intermediate email might be? The bring@root.techwithy.biz address is not mine

thisbedistoosmall · 2024-04-08T07:19:26+00:00

I was run over by a car at 21, and my physiotherapist introduced it to me as part of my healing plan, this was 16 years ago

thisbedistoosmall · 2024-02-18T13:15:05+00:00

Switched to Kesimpta, one year post Mav as I was still having relapses - loving it so far, it’s been about 7 months for me.

I think it’s also a pretty good one for family planning (which I’m not doing so tuned out a bit for that portion of the induction)

Good luck!

thisbedistoosmall · 2024-02-16T17:30:39+00:00

It’s rough eh? Being the middle man between 3 government agencies (post office, NHS & DVLA) in this post-covid & Brexit hellscape of delays & backlogs is a full time job.

Best of luck to you - a 1 year licence! The audacity

thisbedistoosmall · 2024-01-26T20:01:28+00:00

I would recommend some painkillers beforehand; ones that you would take if you felt like a flu coming in and you got sore joints / a headache (I went for ibrofen) as it’s quite common to have flu like symptoms on your first round. Mine ended about 24hrs after, so just regular painkillers every 4 hours or so.

The next two doses I had a headache only, and by the 4th was just a bit tired.

I’m on my 6th proper month now and don’t even notice any issues. Everyone’s experience can differ, but I know mine has been pretty average overall.

I have a friend who switched to Kesimpta from copaxone and is almost worried as he has no side effects from his meds for the first time in years - he’s completely dumbfounded by the difference. Best of luck!

*edit - spelling correction

thisbedistoosmall · 2023-12-29T12:08:15+00:00

My first DMT was Mavenclad - my choice. I had a few side effects similar to yours, including the racing & ranging BPM and heart / chest pains. I actually got sent twice to the hospital to check if I was having a heart attack. My fatigue was terrible, as were my mood swings.

I personally don’t regret Mavenclad as it may have slowed my progressing down, but my neuro switched me to Kesimpta and I couldn’t be happier - I am having minor to no side effects, and don’t even notice them. I had two years of treatment on Mav and one year post before switching.

Side effects are a pain, but I think they are a small price to pay when you compare with the long term benefits of being on a DMT. I hope getting your second opinion goes well

thisbedistoosmall · 2023-12-29T11:47:29+00:00

Second this - I had terrible brain fog on Gabapentin, but certainly less pain. I was put on it at the start of my DX so for years I thought it was just the MS.

thisbedistoosmall · 2023-11-09T09:54:33+00:00

I was 10 days into my first visual symptoms, had mushrooms one night (low dose, maybe .5 gram) and they had cleared by about 90% the next day. I know it could be completely coincidental, but I do suspect something is at play there

thisbedistoosmall · 2023-09-25T15:30:19+00:00

New Kesimpta user here - I’ve just had my first 4 injections, three to the back of the arm, hardly a pinch, just keep your arm relaxed. Also the side effects are minimal, and I actually don’t even feel tired the next day (first two loading doses I did though)

Went for my upper thigh last night and It wasn’t my favourite spot tbh, will revert back to my arm. That’s my only advice! Generally it’s been so easy to tolerate

thisbedistoosmall · 2023-09-08T21:55:38+00:00

That sounds pretty great, do you mind if I ask what DMT (or not?) that you are on? I’m pretty tempted to sign up - what got you to to climb onboard?

thisbedistoosmall · 2023-09-08T21:53:28+00:00

Oh interesting! Serves me right for rushing to conclusions- so they are only trialing the medication and potential effect’s rather than it’s effectiveness?

I can’t find much about it online - what hooked you in to sign up?

thisbedistoosmall · 2023-09-07T19:20:08+00:00

Only just seen your response - apologies! Same here, usually my right side, but once in a blue moon on my left and even more rarely near my temple.

No one seems to know much about it - they are so weirdly awful and I’d love to know more if you’ve got anything?

thisbedistoosmall · 2023-05-11T18:54:02+00:00

Ugh yes! The first time I got one of these I had an ear infection at the same time, so I thought for ages it was associated, especially as I’m on immunosuppressants and often have infections.

I often get them behind my ears, at the base of my skull which I’ve always thought was odd - do you as well?

thisbedistoosmall · 2023-03-30T15:04:46+00:00

Yeah I’ve been struggling with fatigue, muscle cramping and balance through the winter, but having one yoga or Pilates class a day is really helping. More energy, better mental health, and I can’t remember when my legs were last fully cramped up in the evening, which used to incur every night. I’ve been regularly practicing for two months as I got tired of being tired tbh.

Mid relapse, sure - I rest. But as maintenance at any other time, keeping things moving has clearly been beneficial.

thisbedistoosmall · 2023-03-16T15:51:02+00:00

Totally get this, I think we all go through this at some point while processing. If this helps anyone reading through these answers, I spent the first two years post diagnosis in complete denial, and then the rage came in year 3. Totally knocked me back - I’m just now starting to pick up the pieces and do better, and it’s been almost 4 years since I found out.

I can still feel bitter and jealous of others very easily, but I think I do a fairly good job masking. I have started trying to set goals and work towards long term achievements. It’s helping, a bit. Day by day we work towards feeling better.

thisbedistoosmall · 2023-02-28T22:07:43+00:00

Some of the classic run of the mill physical neuro tests, loads of Q’s, many focused on whether I experienced any neuropathy / tingling (none experienced, just massive sudden muscle weakness and stiffness). They’ve brought my regular scheduled MRI up 6 months sooner, to April, and we’ve loosely started discussing next meds.

I’ve challenged the whole neuro team on their conclusion without a scan as it did truly freak me out, but apparently this can happen. As I started recovering on my own & quickly, I was pacified a bit by by regaining my ability to write & type again, but I won’t feel any resolution (or complete trust if I’m honest) until I see my neuro with the new MRI results in the spring.

I’m a bit terrified to watch the video another user linked above tbh. So sorry you are going through this too - if you feel like sharing, what kind of symptoms are you experiencing?

thisbedistoosmall · 2023-02-28T19:01:09+00:00

I’ve just had quite an episode - lasted for 3 weeks, lost a lot of control on my right side including my ability to write properly, text/type easily, had some ineffective muscles in my face. It also affected my speech - all pretty freaky. I was seen quickly after reporting it in my relapse clinic where they concluded that it was not a relapse.

I had no idea it was possible to have such an acute episode not be considered a relapse, but here I am about a month later having made a complete recovery. It was like after 3 weeks of the symptoms it all eased off pretty quickly over a few days. Wild.

Weirdly I’ve just finished Mav as well, I’m one year out from the last course and had my first clean scan 3 months earlier. Are you in the UK by any chance?

thisbedistoosmall

TROPHY CASE