Kesimpta question: Hey gang new here Been... - My MSAA Community

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Kesimpta question

FireUpChips2629 profile image

Hey gang new here Been on kesimpta for 8 weeks now. Had 2 doses of antibiotics for upper resp infection. Finally a bit better but have constant chest tightness, mucus, allergies are insane, hoarse throat, and can't sleep.

Does this get better or perhaps throw in the towel and try something else?

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18 Replies
Gstrait profile image
Gstrait

Hi welcome to this great group, maybe check with your Dr., if you had the respiratory infection before you started Kesimpta sounds like most of your symptoms could be from the infection. It can take 2-3mos. for the Kesimpta to start working for you, but I'm not a dr. but checking with your dr. would be a good idea. Hope you feel better soon. ☺️Leslie

FireUpChips2629 profile image
FireUpChips2629 in reply toGstrait

Thanks appreciate the response. I'm 48 and had MS for 20yrs the mantra seems to be pick your poison. It's exhausting and I'm almost at the point to say screw it and stop meds. Each one has its own side effects unique to us.

Greentime profile image
Greentime

Welcome! I hope you can get this sorted out soon!

FireUpChips2629 profile image
FireUpChips2629 in reply toGreentime

Ah thanks that what doesn't kill us makes us stronger. MS ain't for everyone

AquaZumbaFan profile image
AquaZumbaFan

Hey!

Welcome to the group.. it has been such a relief to be able to reach out to people who are kind and have “been there and done that” I don’t personally have experience with Kesimpta but I feel certain there are a lot of folks out there who can share their experiences.

FireUpChips2629 profile image
FireUpChips2629 in reply toAquaZumbaFan

Ah appreciate the response. I'm from across the pond and glad to have found this site. Good people

09_2020 profile image
09_2020

Hello! Sorry you’ve been dealing with the URIs. I have been on Kesimpta since Jan 2024 and started taking a daily acidophilus probiotic at the same time. My reactions have been minimal but everyone is different. I’d give it another 2-3 months - I felt better after it was in my system longer. It may be good to connect with your doctor so they are aware though. I live in PA - I feel for you regarding allergies this time of year!

FireUpChips2629 profile image
FireUpChips2629 in reply to09_2020

Thanks so much. Yeah I'm not trying to be wimpy and I know these meds are strong stuff but jeeze I feel like a hot mess. My neuro is not the greatest but going to discuss it and see. Seems like aubagio had the least side effects for me but my concerns was it went generic and with risk of brain infection and leukemia I preferred to stay with a brand but I think my game plan is to get another mri and see if I'm stable and if so just stay with aubagio. Fingers crossed

stepsforNeeC profile image
stepsforNeeC

Welcome friend, Share everything you just mentioned to your Neurologist! Medications affect everyone differently, but some side effects are too much. Feel better soon. I’m on Copaxone,, been on it for years because with other underline health issues, it’s the better option for now. Again, everyone reacts differently, you and your doctor have to find your best options! Blessings NeeC

FireUpChips2629 profile image
FireUpChips2629 in reply tostepsforNeeC

Thank you. I started with rebif back in 2005 when first diagnosed. I was also in grad school so pretty stressed. But I knew rebif was causing anxiety but muscled through 10 yrs and talked to drug reps and at the time they said well there's no correlation we'll lately I've seen that it increases depression anxiety. Point being you are so correct. I'm only 48 but had this for 20 some years I feel like a cranky old man with all the side effects lol.

Corran731 profile image
Corran731

Welcome! I was on Ocrevus for 3 years and have now been on Kesimpta for 4. I’ve mostly been able to avoid getting sick, but I’ve noticed that recovery from infections can take a bit longer with these B-cell-targeting medications compared to other DMTs. Respiratory infections tend to hit me the hardest. The NIH also found that MS patients were more vulnerable to respiratory infections during the COVID pandemic.

It’s a good idea to have your neurologist check your IgG quantitative levels regularly to make sure you’re not too immunocompromised and at risk of frequent illness.

I hope you feel better soon!

FireUpChips2629 profile image
FireUpChips2629 in reply toCorran731

Thanks friend really appreciate the reply I sure will

Anijah profile image
Anijah

I have been on Kesimpta for years and no problems. I have never been challenged with any respirator complications. Hope you get better soon and maybe symptoms will go away.

FireUpChips2629 profile image
FireUpChips2629 in reply toAnijah

Thanks you glad it's working well for you! Trial and error as they say

Tazmanian profile image
Tazmanian

Welcome to the group

FireUpChips2629 profile image
FireUpChips2629 in reply toTazmanian

Thank you 😊

Helpmeup profile image
Helpmeup

Hi FireUpChips2629, and welcome! I tried Kesimpta as a last resort DMT. Unfortunately, I did not do well on it, but as other posts say, we all have different experiences with each of the therapies. I have been through the laundry list of DMT's over 25+ years of living with the M.S. beast. Started on Avonex, moved on to Copaxone, Rebif, back to Avonex, then on to Tecfidera and its generic, then Vumerity and lastly, Kesimpta. I started to experience severe muscle pain with each monthly dose of Kesimpta and it got progressively worse. After 6 months, I gave up. My suggestion would be to discuss your recurring infections with your Neuro, and see if there's a better option for you. As you posted, every DMT has its side effects, as you said, "pick your poison". Let us know how you're doing. 😊

FireUpChips2629 profile image
FireUpChips2629 in reply toHelpmeup

Sorry you are going through this your story mimics mine. Rebif insane anxiety and insomnia

Gilenya was wrecking my liver

Full body hives with vumerity

Zeposia massive anxiety and insomnia

Now a fail with kesimpta. Literally have been sick for 10 weeks straight headache sinus fast heart rate and insomnia

There has to be one out there for us right! We are pretty hearty people just have to keep battling

Appreciate the replies.

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