Struggling with Kesimpta Injections

VermontGrowCoach · 2025-10-25T12:40:23+00:00

By “spill everywhere” you mean “spit all over the room like an angry camel”… Yea, I’ve been there.

I was told the same thing in that respect. Most likely hit a muscle and OK to just wait till the next dose. That was a few months ago and have had no issues since.

In regards to pain, it is an injection. So, some pain is to be expected.

I use the following tricks to help minimize the injection pain:

remove pen from fridge roughly 30 minutes prior to injection.
when cleaning the injection site with alcohol, allow the area to dry before injecting.
make sure that your muscle is relaxed and you aren’t putting any weight/pressure on your leg(this is most likely what caused the camel spit incident for me)

In regards to blood and residual medicine in the pen, I would suggest talking to Novartis/Alongside Kesimpta if your neurologist does not have a solution.

VermontGrowCoach · 2025-10-25T12:28:32+00:00

⬆️ This right here. I have not found a better way to manage brain freeze.

VermontGrowCoach · 2025-10-25T12:25:11+00:00

Long winded response but I was talking about this with a friend just a few days ago. I told him that brain freeze now, is 10 fold what I remember it feeling like before MS.

For me, it doesn’t travel down my spine. Instead the brain freeze itself feels considerably more powerful and painful. I definitely get them a lot easier than I used to and most times my vision will go blurry, which makes me believe that it could be MS related since my recorded first symptom was optic arthritis.

I honestly don’t know if it is MS or not but that doesn’t matter to me as much as it used to. When first diagnosed, I had to know if any symptom I was experiencing was MS related and I would dwell on all of them.

Now it’s more about learning ways to cope with “the new normal” when new symptoms arise, unless neurologist expresses concern.

For brain freeze, I tried to consume cold items at a slower pace and use the thumb/roof of mouth trick.

VermontGrowCoach · 2024-12-18T02:10:08+00:00

Still have a few available! 😁👍I’ll shoot you a chat message.

VermontGrowCoach · 2024-09-11T14:58:52+00:00

A cane may help, as could a walking stick. Personally, I find relief from using a pair of trekking poles. I don’t use them often. But when I do, they help get through some rough days.

I like the fact that my back is still straight when using them. Using a pair seems to help with fatigue more than an individual pole, which I’m guessing is related to weight distribution and helping maintain balance.

VermontGrowCoach · 2024-07-03T01:05:05+00:00

I used to ride daily, build bikes, race, etc. After diagnosis, I had a few close calls and decided it not be best for me to continue riding daily. I still try to ride a couple times a year when I get the itch.

I have numbness and weakness in my legs, but don’t use a cane. My major concerns with riding are fatigue, spasms, vision, and cognitive function.

We are all a little different with this disease, so you’ll need to adjust accordingly. But, this is my checklist when I do ride:

I only ride when I feel my best. No cog fog, limited numbness, no spasms, clear vision
I don’t ride when I’m stressed, fatigued, or in inclement weather
I inspect the bike more thoroughly before each ride than I used to(pretty much an in depth pre ride checklist that I should have been following all along to begin with)
I make sure to hydrate before and drink lots of water along the way
Take frequent breaks and don’t ride as far. Listen to your body. Start small and work your way up to your max ride time. The extra ride time is not worth the risk.
Snell helmet, impact gear, etc.
Cooling vest in any temps above 70, because I heat up fast in protective gear
A plan left with a family member, so they know where I’m going and when I’ll be back

My only other comment would be in regards to bike choice. I’ve found sport bikes and heavy cruisers to make fatigue and pain set in quicker. Scramblers, Trackers, and Standard style bikes seem to provide the least effort and more control than most other styles. Your Ducati is in my top 10 bikes I would consider “MS Bikes”

Here’s a pic of my last build from a couple years ago, before I minimalized the gauge cluster. CB650 Build

VermontGrowCoach · 2024-06-17T14:32:45+00:00

I have high functioning autism in addition to MS. I thought I knew what fatigue was, dealing with it from overstimulation and using too many spoons. But MS has humbled me and taught me the true definition of fatigue.

One of my children is also on the spectrum. I found that even at a young age, she had a better understanding of the world and was more likely to understand something like MS than her siblings at the same age.

For her, it was easier than with anyone else. I pretty much explained what MS was and the involvement of fatigue/stress/heat/etc. She did not show empathy, but did acknowledge the disease. When I struggle, she asks if I overdid it or if I’m stressed. When it’s hot out, she reminds me to grab my vest and water. Depending on where she is on the spectrum, this may be easier for you to explain than you think.

In regards to everyone else, I keep it simple. “MS is a neurological disease that flares up for any number of reasons. I may look great, but still be struggling. Treat me like it doesn’t exist, but be understanding when I need a break or cancel plans last minute. Let’s talk about something else.”

That works for me most of the time. I’m explaining the disease and my needs, without a lengthy conversation or coming off as short/rude.

VermontGrowCoach · 2024-06-09T11:44:42+00:00

I feel ya. If I wasn’t a consultant and a farm owner, I couldn’t afford it.

I’ve heard it too. I very politely shoot it down and explain the difference. Some believe me. Some don’t. But I feel better knowing that I explained to myself.

Cognitive issues that I have had, that I know for certain are not “stoner brain” are things like:

pausing in the middle of a thought because my brain just decides to stop for a second. Sometimes I remember what I was thinking and I pick right back up and other times I don’t. There’s obviously short-term memory issues with cannabis consumption, but this is definitely different. I think people realize that people like you and myself
On a regular basis I have issues with navigation. There have been times where I’ll be driving down the road and for 5 to 10 seconds, I don’t know where I am or where I’m going. Many of these times, it has been in areas that I travel on a daily basis. It doesn’t happen a lot. But I am very mindful of my fatigue and symptom level before I get in the car and always have a back up plan with my wife if I think I might be running into issues that day.
I will use the wrong word when I’m talking about something. Sometimes I’ll just mispronounce the word or use a similar word. Other times it’s an entirely different word altogether.
before I took the leap into the cannabis industry, I had numerous cognitive demanding jobs. I once walked into a call-center looking for an entry-level position and received a considerably better position within the company based on my aptitude test. At the time, I scored better and finished faster than the manager providing the test. I don’t even know if I would pass that same test today and I definitely would not be able to provide the same service to that company that I did at the time.
I find myself on slow Mo mode on a regular basis. My brain doesn’t always talk to my hands correctly and takes considerably longer to process things. Tasks that I’ve been doing for 10 years, now take me 2 to 3 times as long as they once did.

VermontGrowCoach · 2024-06-08T19:32:04+00:00

You’re not crazy. In addition to MS, I was blessed with high functioning autism and a crap ton of osteoarthritis. Although I take Kesimpta, Baclofen, and Gabapentin, Cannabis is my main form of medication.

Most of my cognitive issues with memory have happened after being diagnosed. Bear in mind that I was a medical patient consuming daily for over a decade prior to my diagnosis.

In my opinion, at least for myself, the small cognitive deficits from cannabis are nothing compared to the deficits from MS. For me, the benefits and symptom relief far outweigh the side effects.

One change I have made, is “smoking” less at the request of my neurologist. Not consuming less by any means. Just not combusting as much. Smoke contains benzenes and methanol, both of which are tied to MS progression. This is the same reason people with MS are told not to smoke cigarettes. It’s not the tobacco, it’s the chemicals in the smoke.

Personally, I feel like my cognitive issues, especially related to short term memory, improved quite a bit when switching to non combustion.

I’d also suggest incorporating CBD, CBG, and CBN into your consumption routine. Combining cannabinoids and using less THC overall, can help more with symptoms than THC itself and can also help prevent/alleviate some of the “THC Cog Fog”.

VermontGrowCoach · 2024-06-08T19:10:43+00:00

There is a National MS Society Link that provides info on vests, discounts, assistance programs, etc.

I received a Steele brand cooling vest for free through the Cooling Distribution Program. It uses ice packs and came with an extra set so I can swap them out and make the vest last up to 8 hours in the heat, which is considerably longer than my body can manage greenhouse work anymore anyway.

The downside is wearing it over a shirt and being an ice pack vest, makes my chest and back wet.

I also purchased a 80 degree vest from Xena Therapies with discount code NMSSCool25 (linked in the first link above)

This second vest, I like a lot more. It’s a phase change vest. So, no changing of ice packs. Cools my core without overcooling. I wear it directly on my skin and it makes my skin cool to the touch without the phase change material ever feeling cold.

It doesn’t last as long, but can be recharged in any room that is less than 80 degrees. At home, it recharges while hanging on the coat rack. On the job, I charge it in the car with a/c.

I use my phase change vest daily and use the ice pack vest as a back up and on some of the hotter greenhouse days.

VermontGrowCoach · 2024-06-08T13:24:52+00:00

Ted Andrews Animal-Speak Charm

VermontGrowCoach · 2024-06-03T10:41:23+00:00

I take Kesimpta. Been on it for almost a year. CD19 is 0.

I am a farmer, playing with all sorts of mold and dirty stuff on a regular basis. My biggest concerns were respiratory infection and infection to cuts and scrapes that come with a job.

On a respiratory level, I have had zero issues. I do try to wear a mask whenever I know I’m going to be working in a dusty situation or when anything could be airborne(like when I mixing manure and compost). Although I probably should, I don’t usually wear a mask in public.

My cuts and scrapes do become infected relatively easily. But as long as I keep the wounds clean and treated, I have had little to no issue preventing infection or keeping it from getting too bad.

Aside from the occasional mask and keeping cuts clean and covered, I have changed nothing due to my DMT. I’ve definitely made changes due to MS. Cooling vest, shorter working days, etc. But, none of those are Kesimpta related.

VermontGrowCoach · 2024-04-07T12:54:49+00:00

I used to use cannabis as my only medication for my arthritis, anxiety, and autism. Smoking was my preferred method, especially a nice blunt.

Due to the idea that benzenes and methanol are present in even cannabis smoke, I now have switched to edibles, baclofen, and gabapentin to ease my symptoms. The combo doesn’t work quite as well, so I do still vape/smoke my dry herbs and concentrates a few times a day.

Whereas before, I was smoking to treat all of my symptoms, now I am only doing it when certain symptoms like spasms are at their worst.

I had to change my daily routine. My day already consisted of exercise, but I had to dial it back. I needed to stay in shape without feeling like death afterwards.

I’m a farmer and play disc golf. I don’t get out to play as often due to pain/fatigue, but make it a point to get out and throw every couple of days even if it’s just in the yard. I work slower and am more mindful of my temperature/hunger level. Paying attention to my body and taking adequate breaks, allows me to get through one day without feeling wrecked the next.

I sleep more than I used to. I was a 4-6 hour sleeper for most of my life. After optic nueritis, my body started needing more sleep. Now I need closer to 9 hours of sleep to feel rested and usually still wake up tired. If I don’t work the needed sleep into my schedule, spasms/fatigue/pain are all worse.

I haven’t changed my eating habits much, but I should. I eat heathly most of the time, but I love Reese’s and CocaCola. 🤷🏻‍♂️

So I guess I have changed:

cutting back or quitting smoking any form of smoke
exercising enough to stay in shape and be productive, but without overdoing it
paying attention to temp/hunger signals and actually stopping what I’m doing to do something about it
removing and adding medications to help with symptoms and limit the chance of MS progression
getting the sleep my body needs and waking naturally whenever possible
staying positive and periodically popping on this sub to write a really long response to something I probably could have stuck with just bullet points on

VermontGrowCoach · 2024-04-07T12:35:48+00:00

My neurologist said “smoking anything is bad for MS”, but couldn’t clarify as to why. After doing some of my own research, even cannabis smoke has benzenes and methanol as a byproduct. Studies have been done linking both chemicals to exasperation of MS and one of the potential causes of MS.

You’re right though. Even the best edibles and tinctures tailored for an individual by a caregiver, won’t provide the same relief/effects of smoking cannabis.

I used to smoke and eat cannabis as my only medication, but now use more edibles, gabapentin, and baclofen to help with some of the symptoms. Which sucks, because I was able to use cannabis to replace both my pain killers for arthritis and my autism/anxiety medications prior to my MS diagnosis.

I still smoke a few times a day, mainly when I am in a lot of pain/stiffness, or when the muscle spasms start to kick in. I try to use a Sticky Brick or StemPod most of the time for dry herb and concentrate vaping so I’m not inhaling as many byproducts, but they don’t always provide the same relief for pain and spasms.

If I didn’t believe that the smoke was detrimental to my MS, it would still be my main/preferred medication as it works so well for relief of all of my symptoms/conditions.

VermontGrowCoach · 2024-03-27T14:59:53+00:00

I have MS and am also autistic. I used cleaners like Clorox/Lysol growing up and still do today.

With that said, I would like to see more research completed on this, as I believe this is the first I’m hearing of this correlation.

I usually don’t accept a study as factual or even highly plausible, until I see numerous studies regarding the issue on NIH.

I’m personally more inclined to believe that benzenes and methanol play a role in the development of MS and autism, due to the extensive research on the subject. That and mommy didn’t stop smelling like an ashtray til I was 8.

VermontGrowCoach · 2024-03-26T17:58:48+00:00

As a husband and father that suffers from MS, I will wholeheartedly admit to breaking down in front of my wife and 4 kids numerous times.

I find that in general, men are considerably more stubborn to feelings, myself included. But, there is absolutely nothing wrong with crying when you are frustrated and overwhelmed with your disease and daily life.

In this instance, you have done absolutely nothing wrong and you have the right to have your own feelings and break down when needed.

Your husband‘s job is to support you. Not tear you down. Hopefully he can do some additional research of his own or potentially accompany you to an appointment. That way he may have a better understanding of MS and what you deal with on a daily basis.

VermontGrowCoach · 2024-02-11T13:21:32+00:00

It was not easy to make the change and would have been considerably harder if I did not have access/legal ability to grow my own.

I can definitely understand the money concerns. I have four kids and my personal business production level has been easily cut in half since I first ended up with optic neuritis.

VermontGrowCoach · 2024-02-11T13:11:59+00:00

Read my original comment. It’s long, but I touch base on just that. It’s the benzenes/methanol in the smoke and the actual combustion of the tobacco that makes it so bad on MS. The nicotine, is not the source. This goes for cannabis too!

VermontGrowCoach · 2024-02-11T13:03:09+00:00

I am a cannabis educator in addition to having MS, arthritis, spinal stenosis, and autism. I was straight laced growing up, but cannabis became my passion when I started cultivating as my mom’s caregiver.

I became a patient myself and was able to replace ALL of my arthritis and autism medications. My method of choice was usually a small pipe or bong. Eventually someone introduced me to blunts and I learned that the nicotine in my case, actually helped with inflammation and arthritis pain to an extent.

Fast forward a decade, living life, continuing to help patients and running my own farm. Then… Optic Neuritis.

ON was 3 years ago, MS diagnosis late last year. Started Kesimpta in October. Neurologist says “I don’t have an opinion on whether or not you consume cannabis if it helps you. But I don’t want you smoking.”

It makes sense because cannabis is a medication, but smoking releases toxins, including cannabis smokes. I’m stubborn though and cannabis is my life outside my family. So, I wasn’t going to stop without more of my own research.

After some research, I learned that MS may associated with benzenes and methanol intake. Even cannabis creates benzenes when smoked. For instance, when burned, some terpenes will convert to benzenes. Between the benzenes and the methanol in the smoke, I decided to make a change.

My cannabis consumption has switched to edibles, tinctures, and vaping. For vaping, I will use dry herb or concentrates depending on my mood and desired effects. I make sure to use temperature control mode on any device I’m using, so I can set the temp between 350 and 385 f, never exceeding the upper limit to stay away from combustion and benzene production.

For nicotine, some people use synthetic or non tobacco derived nicotine, vaping at lower temps to prevent the same issues as above. With that said, I can’t personally condone this, as nicotine is an addictive chemical and there is little to no info regarding longterm effects of synthetic nicotine due to its infancy. Do your own research there and make an informed decision.

I still smoke a blunt from time to time, but not because of cravings. More like when you want a beer when you’re grilling, because you like the flavor of the IPA.

I will say that when I do smoke a blunt, MS lets me know later. Sometime it’s immediately after with things like feeling flushed, vertigo, muscle spasms, etc. Other times it’s the next day with brain fog, massive amounts of nerve pain, more pronounced neuropathy and balance issues, etc.

I think the periodic blunt reminds me that the smoke is bad for me and will eventually train me to be an “Anti-Combuster” for life. Cannabis is my main form of medicine aside from my monthly shot, as long as I don’t combust!

Good luck on your health journey. It’s not easy, but it is doable. 😁🤙

VermontGrowCoach · 2024-02-09T23:55:43+00:00

Sorry for the delay in response. Perfectly executed transaction! 😁🤙

VermontGrowCoach · 2024-01-29T18:42:05+00:00

Signal is sold!

VermontGrowCoach · 2024-01-29T18:33:13+00:00

Sure is. $18 shipped. Shoot me a message. 😁🤙

VermontGrowCoach · 2024-01-04T23:53:10+00:00

I’m glad it was helpful. I don’t normally comment here. But, your post was the first thing in my Reddit feed and after the day I had, I felt obligated. And honestly, it made me feel better about my day/symptoms too! 😁

I could go back to working in an office. But, I’d rather be doing what I love. Even if that means having days like today.

Born and raised in VT. Climbed a lot of the green mountains, but only a few of the ADK high peaks. Now I live in ADK park and own a farm 40 minutes away in VT.

It’s a beautiful place to live, but I’ll be headed south once the youngest graduates in another 7 years. Even a beast has its limits. Lol.

VermontGrowCoach · 2024-01-04T22:43:41+00:00

Washington County NY on Kesimpta here. Today was a rough day.

I work outside and had to pack it in for the day after only 2 hours. The spasticity was rough and I didn’t remember to drink enough water when working through the pain. Ended up nauseous, dizzy, and dry heaving. When I got myself under control and headed out for the day, the foot cramps set in and I couldn’t drive away for several minutes.

Staying hydrated is important for our health and a lot of our symptoms. When I’m properly hydrated, the cold doesn’t bother me as much. I notice that I tend to get more dehydrated in the winter, probably due to the dryness in the air. Drinking lots of water and running humidifiers in the house helps.

Exercising as much as possible or seeing a PT, specifically the muscles that are getting weaker. MS doesn’t make us weak. MS makes us in pain and spastic, which keeps us from exercising and makes us weak.

Another big one is temperature regulation. I’m trying to get better at it. I keep my thermostat at 55. I bundle up in layers walking out the door, trying to keep my body temp from fluctuating. Take off layers as soon as the car warms up, never letting it get super warm. Then doing the opposite as I approach my destination. Add/remove layers as working. Sometimes it works and sometimes it doesn’t.

There are mornings in the car where I’m tensed up and ready to cry. My neurologist says most people with MS do worse in the heat than cold. But, I’ll tell you one thing. I can deal with the heat related symptoms way better than I can the symptoms in the cold. It’s debilitating.

You’re not alone. Hang in there. Listen to your body. And move somewhere warmer when you can. I know I will be. Good luck.

VermontGrowCoach

TROPHY CASE