New Busy Member

[Womenintec]

Mixed media Artist changing from Ocrevus to Kesimpta. If you are taking either I would like to hear about it. Thanks. Let’s have cocoa

[Xvettech]

I would love cocoa :). I am on kesimpta. I think it’s amazing. It took 3 months to finally last me feeling better all month long. It’s easy to administer I think nor highly of it than I do ocrevus only because my cousin is finally changing off that to something else. She was always sick on it. A cold sick then started getting more serious with upper respiratory infections. I haven’t been on kesimpta for a year yet but it makes it so much easier to move!

[Womenintec in reply to Xvettech]

I’ve never been sick on Ocrevus and was on it for more than six years and took it every five months. But now the manufacturer doesn’t want to give it except every six months. Absurd to me as it is still twice a year. But such is life. My cognition is mostly bothered.

What did you take before this? I’m in NC. You are welcome for cocoa

[Xvettech in reply to Womenintec]

I took nothing before kesimpta that was my first.

My cognition is foggy but the worse for me is walking and balance.

You are still east coast I’m up in Philly

[Womenintec in reply to Xvettech]

I love Philly and as I consider where to move to it is one of my places. I don’t have public transportation here but I have a nice home and there are some pluses. But I am a long way from family. Have you tried Ampyra I think it is called and or Physical Therapy? I can give you some hints about balance if you would like and if it is allowed to say what works for me.

[Xvettech in reply to Womenintec]

I do physical therapy it’s awesome. I would love exercise ideas! Thank you!

[Womenintec in reply to Xvettech]

will write tonight or tomorrow. Am having my Solumedrol cocktail. Lol

[NorasMom]

I'm not on either one, but I'll take some cocoa!

[Womenintec in reply to NorasMom]

You don’t take anything for your MS?

[NorasMom in reply to Womenintec]

No. I'd had it for too many years by the time I was finally diagnosed. My neuro didn't feel that any of the drugs would do anything for me. I did try Ocrevus for the first two half-doses, but I had too many problems with it.

[ahrogers]

I have been on Ocrevus since 2016. No side effects and only crap gap symptom I have is a slight increase in fatigue so still get it every 6 months. I haven't had any new lesions since being on it but had a lot prior to starting. On last MRI my neurologist noticed a little atrophy of my spinal cord where I have lesions which explains the slow progression of symptoms. She recommended I look into clinical trials for PPMS to see if something else would work better. Unfortunately, the only trial recruiting for PPMS is a BTKI vs Ocrevus and since my disability is progressing on Ocrevus I do not qualify. I am hoping a BTKI gets approved sometime soon as I would be willing to switch.

kdali has been on both Ocrevus and Kesimpta so might be able to give you more insight

Good luck! I live in SC 😊

[kdali in reply to ahrogers]

I'm sad to hear this 😞 That's a long wait 😞What about Mavenclad? It's used in progressive types, kills a few glial baddies, might preserve brain/cord volume 🤔 I've noticed a few primary people lately going for it in the FB group. Might be worth checking out!

[ahrogers in reply to kdali]

I didn't think to ask about it until a few days after my visit. I was a bit overwhelmed because she confirmed I had PPMS not RRMS as all the other doctors had as my diagnosis. Then when she reviewed the MRIs with me noted the cord atrophy which was not in the radiologists report. At the end is when she suggested finding a clinical trial before my disability gets worse because most trials don't take people with too high of an EDSS score. She is involved in the one trial I don't qualify for with the BTKI vs Ocrevus. When I checked clinicaltrials.gov that was the only one for PPMS still recruiting. I have been feeling pretty discouraged since then and forgot about looking into the other DMTs already approved for PPMS. Thanks for the reminder! I am going to do some research!!! 😁 The visit did at least let me know what is causing worsening disability.

BTW- I have been using my vibration plate more the last couple weeks. I like it and am hoping I am getting some benefit 😊

[kdali in reply to ahrogers]

You're welcome! I would be in a shock fog also. ChariotMS is using Mavenclad for PPMS, but has a while to go and is UK based. I don't remember what the limitations are with Clene's Repair MS, but I think they are still recruiting.

Yay, I'm so glad to hear that! 🎉 I really love my "boogie board" 🤣 It has to help, right? The muscle twitch fest after I get off is always amusing.

[Womenintec in reply to ahrogers]

none of my business but how old are you? And where in SC? I don’t want an address just a town. I’m not eligible for research much as I am too old and have had lots of different things. I never got crap gap I would just hit a wall at 5 months.

[ahrogers in reply to Womenintec]

I am 54 and live in Rock Hill so close to NC. I used to work in Charlotte but was able to transfer to Rock Hill a year ago.I have noticed the age restrictions for research.

[Womenintec in reply to ahrogers]

I’m too old for most trials

[kdali]

Welcome! I have been on both, and discovered the drug type does not agree with me, very long crazy story. My first impression of Kesimpta was great! No premeds, no lengthy infusion, no injection site reactions, and no downtime. I joined a Kesimpta group on Facebook and noticed most that have minor issues in the beginning fade over time, usually gone within 3-6mo. The advice for shot days is the same with Ocrevus, stay hydrated to prevent headaches. GL!

[Essaad]

Hi.my first treatment was Tyasabr ,i stopped it because of JCV VIRUS , started second treatment ocrevus since 3 years ago and I'm still on it.

[Sandydemop]

i would love some cocoa. my doc gave me a choice between mavenclad and kesimpta. i picked mavenclad for having less side effects. a little nausea in the beginning. nothing now.

[Tazmanian]

I would love some cocoa I'm in NJ and am on ocrevus

[kycmary]

Hot chocolate sounds good! I'm on Ocrevus started my 5th yr last Dec. It is great.

[Fancy59 CommunityAmbassador]

Womenintec, Hello and welcome to our extended family We are glad you have found us. I was on Òcrevus for years but as I got into my Is mid sixties I had a major infection, A blood infection developed and then went septic and it almost killed me. It was due to my immune system growing weaker and the Ocrevus making it even weaker. My last infusion was last May of 2022. I would love to hear more aboùt kesimpta. Please share information about it as you find out more about it and are on it. Thanks for the input and glad you're on board. Remember together we are stronger. Fancy59.

[Raingrrl]

That hot chocolate looks so tempting!

I was on Ocrevus for 5 years but haven’t had an infusion for over a year. I’m similar in age and in Ocrevus negative experiences to  Fancy1959 . As I’ve aged and my immune system naturally diminished in strength, Ocrevus made it much worse to the point that I developed serious deficiencies in my immunoglobulins. Subsequently I acquired 2 rare infections that ultimately required surgery. Not fun. But what happened to me is unusual and not the norm.