Kesimpta Question

[MSFlea]

I alternate which leg I do my Kesimpta injection on, and this month (month 6) was my left leg's turn. Which is also my weaker, more painful leg. And it has been hurting more of late. Well, the pain has been getting worse of late, but I didn't think of that, just looked at my journal and saw where I was supposed to inject and did it. It hurt like a giant bee sting, which was unusual, but again, didn't think much of it. Till about 30 minutes later and my leg pain started to intensify.

Now, I premedicate with Benadryl and Tylenol and then take those for the whole day and the next day (sometimes the day after that too), because I get rather awful flu like symptoms with the Kesimpta. I'm okay with that. It's inconvenient, but I'd rather that than get more lesions. (I'll be looking into trying another DMT when I see my new MS neuro at the end of the month, but more on that in another post!). The leg pain just kept getting worse. Almost unbearably worse. Like, if I didn't have know I have MS, I'd have gone to the ER.

I tried Aspercreme on my whole leg, didn't help. Then I put a lidocane patch that I have for my back on my thigh where the worst of the pain was, lol. Didn't help. I have a huge heating pad for my back that I wrapped around my thigh, and that helped a tiny bit, until I started overheating. Then I stretched while my muscles where still warm, which helped a tiny bit. Then about 5 minutes later it went back to being almost unbearable again.

It's not quite as bad this morning, but it is slowly getting worse again... any suggestions for things to try to get it to not hurt as bad? I'm almost sure that it will be like the flu symptoms and slowly go away, but... what to I do in the meanwhile, other than try to distract myself? Thank you for any suggestions! I'm going to go crochet and listen to a audio book and await any replies with suggestions now, lol!! 🧡

[CatsandCars]

I don't have any suggestions, but that sounds horrible. I'm sorry, MSFlea. I hope this latest unpleasant development goes away soon, and that your new doc can help you find a better DMT for you, if necessary. Sending hugs your way. 🩵

[MSFlea in reply to CatsandCars]

It has calmed down some, thank goodness! I'm hoping that my new MS neuro will put me on a different DMT! That will be at the end of the month. I really just don't think Kesimpta is right for me. I know it works great for other people, but it doesn't seem to be so great for me. 🧡

[kdali]

You could try an Epsom soak and ask your MD if you can try a magnesium supplement. I used a massage ball and heat for my leg for mild relief also, while stretching 3 times per day at least. Keep a journal of which days it is the worst and when it starts to feel better...for example "day after shot x 3 days", "day after exercise x 2 days" and list what you try and if it helps, or how long it helps.

[MSFlea in reply to kdali]

Thank you for the journal idea, I had not thought of that! While I would love a good soak in the tub, me and hot, or even really warm baths don't get along any more 😥 I used to love soaking in a hot tub. But now I overheat and that makes me very dizzy. Even if it isn't that hot, I get that way. Stretching more sounds like a very good idea too. I'm okay so far with the heating pad, as long as I don't leave it on too long. And then I stretch afterwards. I think that stretching more often throughout the day is a very good idea. I'll add that to my flexible routine list. Thank you so much for the ideas!🧡

[Judenh in reply to MSFlea]

MSflea, there are also small, med, large “pillow” or whatever they are called (my brain is too foggy to think of the correct name lol) filled with the same epsom salts you would use in a bath tub, just heat it in the microwave, works better than a heating pad and doesn’t have to be hot, in fact they don’t recommend it to be hot, just warm. There are also creams with magnesium in them, I use one from Asutra called melt pain away, it’s great, works for my nerve pain in my legs (thigh) back pain etc. Gabapentin works well for nerve pain as well if your doctor hasn’t prescribed it already. Hope you’re better soon, try injecting in another spot, I have injected in stomach area and went just fine, I have problems when injecting into thigh I usually do the back of my upper arm, injected yesterday (July 4th) upper arm. Feel better soon

[kycmary]

So sorry I remember that flu feeling NOT fun. I was started on Avenox 30 odd years ago after a couple of years is when the flu like symptoms started I let my Dr. know right away, tried several things & finally changed to a different DMT. I have heard that several people couldn't tolerate Avenox! You probably need to change to another as there are lots of new ones now there weren't 30 years ago. Good luck I'm on Ocrevus now will finish up my 7th. Year next Thursday. God bless Mary

[BettysMom in reply to kycmary]

Avonex.

[MSFlea in reply to kycmary]

I tried talking to my neuro about it, but she said the flu like symptoms were quite normal.... I think the severity of the flu like symptoms is not normal (but I could be wrong). I have to block my schedule (thank you to the person who told me to do this, I wasn't before and I was dragging myself places while feeling miserable!) I feel like I have a very bad case of the flu for three days. Most people I've read about who take Kesimpta stop getting worse, or even get some functionality back. I'm getting worse still. So I agree, it's time to look at different DMT's. And a different neuro. I'm going to see an MS specialist neuro at the end of the month and I'm very hopeful that she will be a good one!! The person who made the appointment for me was very thorough and asked me all my symptoms and what else is going on, and got me in with someone works with some of those things, so I have high hopes!🧡

[CatsandCars in reply to MSFlea]

I think it's terrific that you're advocating for yourself and bring proactive by changing doctors and seeking to change medications. I remember the Avonex that kycmary mentioned so well, it did make you feel sick the night you got it, but all the other meds required more injections so I didn't even consider switching! With all the different DMTs available now, there's no reason to suffer. Kesimpta is definitely a good drug to start out with, but if you you're not improving and your doctor isn't listening to you, then good for you for finding another doctor!

I find it perplexing that Ocrevus and Kesimpta work essentially the same way, but flu like symptoms aren't that common with Ocrevus. I wonder if it's due to the steroids and antihistamine. Basically, these drugs start off as mouse antibodies and are "humanized" as much as possible (I would love to understand what that entails) so that's why the flu like symptoms happen. I remember reading the patient insert that came with my Avonex and learning the interferon was developed using Chinese Hamsters.

Another thing that I've wondered about between Ocrevus and Kesimpta is how often doctors will switch people from one to the other when their MS symptoms or MRIs aren't improving. If someone has a lot of side effects on Kesimpta but their MS is stable, switching to Ocrevus (or vice versa) makes a lot of sense. But since the drugs work exactly the same way, I find it concerning when someone is getting worse or has a new lesion and doctors will put them on another CD20 Inhibitor, like Ocrevus to Kesimpta or Kesimpta to Ocrevus. I didn't feel confident sharing those thoughts, but in Aaron Boster's latest live stream he basically said the same thing, that he personally would go to Lemtrada or "maybe, possibly" Mavenclad in that situation. I think where you would go from there would depend on what the patient is comfortable with risk-wise, as well as efficacy.

I am so excited for you to see your new doctor. I have high hopes for you as well!

[MSFlea in reply to CatsandCars]

Thank you 😊And I did not know that about the Ocrevus and Kesimpta🐭 I had given myself a month long break from looking up too much stuff about MS (time to get back to researching!) because there for a bit I was doing a lot of research and it was so frustrating, because my neurologist would not listen to me.

I'm not sure what this new MS neuro will be like, but I'm just hoping for someone who will listen to me, and knows what they are doing. A tall order, I know, 🤣

[CatsandCars in reply to MSFlea]

I'm sure they exist! 🤣

[AquaZumbaFan]

I did Avonex injections for 19 years and I never had anything quite like that from the injection, but I would often ice my leg before I gave myself the injection and I wouldn’t even feel the needle go in. I had pain like that on my leg last year when I had the disc in my back bulge and extrude… It took us approximately a year and a half to figure it all out.. there had never been anything wrong with my leg. It was all coming from pain from the back… sending prayers for you🙏🏼🙏🏼

[mrsmike9 in reply to AquaZumbaFan]

Isn't it funny how we blame other ills on MS when they might not be? I know I do it.

[AquaZumbaFan in reply to mrsmike9]

mrsmike9, it wasn’t just me blaming it on the MS. It was my neurologist telling me it was an orthopedic problem with my quad and knee… he sent me to PT for four months.. I told them all along. It felt like neurological pain. Trust me when I say I am familiar with the orthopedic pain… I never had any bruising, swelling or injury.. I couldn’t imagine that I could have such severe pain where there was not Bruising, swelling or injury. It didn’t make sense, but I went along with what they suggested… Actually, very grateful that they figured out that it was the bulging and extruding discs.. At least that made sense.

[mrsmike9 in reply to AquaZumbaFan]

Yay!

[Helpmeup]

Hi MSFlea. Sounds just miserable. I have a suggestion. Have you tried doing the injections into your abdomen? I found that tummy shots are way easier to tolerate. If you haven't tried them, you can inject into your abdomen at least a few inches to the left or right of your belly button. You can get on youtube to see video tutorials on how and where to inject in your belly. Give it a try. Once I started injecting into my belly, I never went back to doing my leg! Hope this helps. 🤗

Ok, I re-read your post, and it does sound like it's not just the injection site, but all the pain and flu-like symptoms after. So I wanted to add this. I had started on Kesimpta a while back and had terrible pain several hours after the first dose. It seemed to get better with the subsequent doses, but after 3 or 4 months the widespread pain got much worse. After my month six shot, I was in so much pain, I realized that my body was just not tolerating it. I spoke to my neurologist and stopped taking it. It could be similar for you, that you are just not tolerating this particular drug. You really need to let your doctor know and discuss other options before you are due for your next dose. 😊

[MSFlea in reply to Helpmeup]

I'm sorry to hear that you had that experience with Kesimpta, and I do think that may be the case for me. That my body is just not tolerating it well. I promised Hubby I would try it for 6 months, to give it a good amount of time, and this was month 6. Today is 2 days after, and I still feel like I've had a bad case of the flu, whole body aches, etc. At least this time I kept enough Tylenol in me not to get a fever!

Thankfully, I will see my new MS neurologist towards the end of July. I'm not going to order my next dose of Kesimpta until after that appointment to see if they want me to take it, or wait to get on something else.

[Helpmeup in reply to MSFlea]

I'm glad to hear you are seeing a new MS specialist in a few weeks. Sounds like a good plan to hold off your next order until your next appt. Interesting, it was after my month 6 that I had to stop. Hope your new neuro has some good advice for you! 🤗

[Jesusfreak72]

I've been taking Kesimpta for about 3 years now. I love it because I have no side effects with it. I know this sounds silly, but are you letting your pen come up to room temperature before you inject it? I didn't one time, and it felt just as you described. Like a bee sting. The other side effects you mention, sound like a reaction? I used to get those reactions when I was on Ocrevus. I hope you're able to get it figured out? Prayers are being sent your way.

[MSFlea in reply to Jesusfreak72]

I do let it come to room temp. I also give myself pen injections of migraine meds, have for years, so I'm familiar with it. I'm glad to hear Kesimpta works well for you! I read so many good things about it working just that way, and that was what I was hoping for. My neuro said that the flu like symptoms were normal, but I really think my neuro doesn't really have a clue (which is why I'm switching to an MS neuro), so there is that. 🧡

[sashaming1]

Use a Canabanoid maybe??

[MSFlea in reply to sashaming1]

I think they just made that illegal again in my state

[bxrmom]

Does the company you get your meds from having a nurse line you can contact to let them know what is going on? They may have some helpful tips for you. Please keep us updated MSFlea

[MSFlea in reply to bxrmom]

Thank you. It is slowly getting better. I just keep using the heating pad and stretching frequently. 🧡