I found out yesterday about a new DMT called kesimpta (ofatumumab). Like Ocrevus it hits the B cell. The difference is its a once a month self administered injection. Im posting a link to the website for those who are interested. It was recently approved by the FDA for RRMS, Active SPMS and CIS. The side effects are said to be less with kesimpta and the ones listed are about the same as Ocrevus. I put a call into my Doctors office this morning so hoping to hear back soon. It is supposed to be available this coming month. I think this will be better for me I will have to let y'all know what else I find out.
That is fantastic news, Allen5280 I sure hope that it will be good for you! Keep us informed, and in the meantime, gentle vHugs, and Keep Smiling, my friend
Thank you carolek572 , I see there is a new tag after your name! I think that is pretty awesome for you are always a voice of inspiration and hope! A valuable part of the forum, congradulations!
Im hanging in there. I had a really bad day Friday. The heat of the summertime is dreadful, i got in a bad way a few times Friday. Paid for it Saturday and yesterday, doing a bit better now. Ive been sleeping way more than anyone should but it is due to the heat. Friday it was 106 and i woke in hyperthermia shakes 3 or 4 times. I couldnt stay awake and i fall asleep and wake drenched in sweat and shaking violently. Luckly the weatherman was wrong about 104 on Saturday, it was only 95 so i caught a big break. If the weatherman is right it looks like its done for the year. I hibernate during rhe summer! LOL im in a much better head space as of late so thats a definate positive change.
I am too, the lengthy infusions are a pain. Quite literally, a MS (Muscle spasm) nightmare. Having to sit in that chair for that long is not helping that situation at all! My last one was at home and it still sucked... i have to get up amd move every so often and it slows the infusion if i move around to much. Then the charlie horses set in and ugggghhhh. Yrs it was better on me than the 3x a week copaxone shots but still... hoping for less severity with side effects as well. I didnt see nearly as many listed for the kesimpta, i did not get done reading all the way through but i think i read through the possible side effects.
Hi Allen, good to hear from you. The side affects are mainly upper respiratory infections, headaches and injection site reactions. Let us know what your doctor says. Personally I would take a tablet every month, I detest needles. Ouch 😣
I hate needles too but ive been down the pill roads before and i was unable to tolerate them too. I was just looking over some information about Ocrevus and it can take 2 1/2 years for my immune system to be back to normal. I was told differently. That makes sense to me because i still have the skin infections andmy last infusion was July of 2019. So im becoming very sceptical about my current specialist. He told me at our last appointment, my system shpuld be normal and thats incorrect. He also told me when I was about to start Ocrevus that it was not an immunosuppressant and thats not correct either. He has also challenged that my skin issues are not due to ocrevus because i should be back to normal b cells and that is probably wrong too. In going to make an appoontment with my pcp to have labs pulled and then go from there. Im begining my research for new physicians. I am greatly disappointed in what i am learning. 😞
Allen5280 This is off topic but I’m curious about your muscle spasms. If lying still for an infusion leads to spasms, does the same thing happen when you’re sleeping? I’ve been having awful pains in my legs and the only thing I can think of is my spasticity, but I hadn’t found anything that would back up my theory.
Yes it certianly does happen in ny sleep. I can not sleep a night rheough withought getting up 3 to 4 times throughout the night to move around for a little while. The more restful night i have the worse it will ne when the morning comes. I wake as though stepped in front of a bus. My insomnia is directly related to fear of the morning.
Thanks for sharing. I’ve started PT for spasticity and it was suggested that I stretch before bed. I did a lot of that last night but still ended up with cramping. And now that you mention it, I’d say I actually had been having a better sleep than usual! So annoying. Ah, well...at least now I know I’m not alone.
Hopefully it will go well. PT can be gruelling, the end results are well worth the struggle. Im lookimg forward to lower temps so i can get back to mine as well. I do mine on my own anymore, gets me out of the house. Ive been doing some around the house so when the tempature lowers im ready to go!
Yes I heard of this new medicine and I will be going on it this coming September my neurologist is very excited about the prospects of it good luck with it if you go on it.
Thanks for sharing the info about this new MS treatment, Allen5280 . For more info on Kesimpta (ofatumumab), including MSAA's chief medical officer's review of the announcement, you can read more on our Latest News article:
Allen5280 and JMAICFAN Did you start using Kesimpta? It's one of a few choices my neuro has suggested and am looking them over before I see her on Monday. Thanks for any feedback.
Lilith08 , I didn't start anything new as of yet. My Neuro/specialist wanted me to go to Limtrada and with the side effects (I am hypersensitive to medication) I said NO WAY. This is not the first go at rhe issue so it was time for me to move on. I have my first appointment with Oklahoma Medical Research Foundations MS Center For Excellence on December the 8th. Hoping ro find so possible answers with some fresh eyes on my case. I didnt feel like my previous physician still having my best interests. Began to feel like a cash cow so after discussions with my primary care physician it was decided for me to change treatment course. It will be a little while before those decisions are made. I will say that Ocrevus was the closest ive to being able to stay on any dmt, they are hard on me. Hope you get something figured out with your Dr. That works well for you.
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