Whoever came up with that saying, outta be court marshall'd! 😭 Good news, the pain is pretty much over...
Better news, I'm never ever gonna take it again! Not in this lifetime or the next!
So my next move is Kesimpta or back to Copaxone....
Any info on Kesimpta would be awesome!
Missed you guys!,
🤗💕🌠
I am not kesimpta but because it is very similar to Ocrevus. I wonder if the side effects would be the same for you? Just guessing really don’t know.🤷♀️
SEEEEE that's what i said! 😂 ughhh and i won't do this everymonth! 🤗💕🌠
I understand your thinking given what you’ve been going through, but u just don’t know until u try it…kesimpta is likely more effective than copaxone . Talk with ur doc about it…
Glad you're feeling better. Hope things will get straightened out soon.
Probably the same person that said ‘It can’t get any worse’, Jesmcd2 ! I really hate that one.
I know nothing of Kesimpta, other than it’s a monthly injection of Ocrevus. I would hope that kdali sees your post because she had issues with Kesimpta. 
Jes, here's everything we have compiled on Kesimpta (including side effects, prescription assistance, and other key info like a video from a Neurologist and MS Specialist on her take about Kesimpta) as part of MSAA's Ultimate MS Treatment Guide:
mymsaa.org/treatment/kesimpta/
Good luck!
- John, Multiple Sclerosis Association of America (MSAA)
SO SORRY FOR ALL OF THE BIG BS...GO GIRL...ALL OF MY LOVE FOR YOU TO KEEP ON KEEPING ON...YOUR SO STRONG ...LOVE YA TAKE CARE IN WHAT YOU DO NEXT ...CHECK WITH DOCTORS FOR GOOD ADVISE...
Hi! I can tell you that Kesimpta is a B-cell depleter and pretty much the same "recipe" as O. The only difference is instead of twice yearly infusions, it's once a month sub-q shot at home. I tried it and had terrible side effects. I hung in there for six months, but gave up. After six months of non-stop pain, I told my neuro I'd never take it again. If you had a rough time with Ocrevus, you might have a bad reaction with the Kesimpta. Unfortunately, with any DMT, you just can't know how you'll react until you give it a try. I know lots of people do great on O and Kesimpta, I was not so lucky. Best of luck with your decision! 🤗
So sorry that my post was unclear! In my rush to reply, I didn't make it clear that I was on Kesimpta, not Ocrevus, when I experienced all the body pain. Oops! 😜
Hi, Helpmeup! What kind of pain did you get from Ocrevus, if you don't mind my asking? I'm on Ocrevus and I noticed pain from tight muscles has been unbearable since I started it, but all I saw as far as Ocrevus side effects was pain in the arms, legs, and back, so that doesn't sound like it's Ocrevus-related.
Hi catsandcars! After re-reading my post, I realized it wasn't very clear! I wasn't on Ocrevus, I was on Kesimpta. It was the Kesimpta that caused a lot of body pain. I felt like everything hurt: bones, muscles, joints, it was terrible all over pain that got worse with each monthly injection. So sorry for the confusion! 😜
Upon reading as second time, you actually did say it. I missed it, so don't be sorry.🤣 The pain info is still helpful since the two are similar. Thanks for sharing your experience!
I am also sorry that you went through such misery!
Thank you! The misery didn't end when I stopped the Kesimpta shots. It took almost a year of continued pain and swollen lymph nodes while my body tried desperately to re-adjust. The B-cell depleters are definitely not for me! My neuro suggested I try Ocrevus after the Kesimpta nightmare, and I cannot repeat what I told her without getting censored!!! 😂😂😂
I'm glad you're finally better. And I don't blame you for your feelings about trying ocrevus!😅
Hi Jes! I had a terrible time with Ocrevus and have been scared to try any other B cell depleters. I’m in a Facebook group of mostly people who have had serious issues with Ocrevus. Some have gone on to Kesimpta and have had a much better experience. It’s such a roll of the dice, isn’t it?
I have a question for you. I know ypu were on Ocrevus and your immunoglobulins were low prior to getting a horrible infection. My neurologist's office left me a message today, which I'm guessing is about my blood work. My immunoglobulin M is 24, and the reference range is 50-300 mg/dL. I don't trust my neurologist at all, but I am going to see an MS specialist right before my next Ocrevus infusion (on purpose). I just wanted to see if you had any thoughts prior to me seeing the new doc. I did find an article that said low levels of IgG tended to be more indicative of a risk of serious infections.
multiplesclerosisnewstoday....
Also, thanks for posting about your experience for the sake of others. I am horrified by what you went through, especially how long it took to get your infection diagnosed. Thank God for your family. I'm really glad you're still here!
Thank you! I’m now living with my sister and bro-in-law so that I have immediate help if need be. We are all in our 60’s so sometimes I’m helping them! I haven’t been sick at all since my surgery. And since I have B cells back, vaccines will produce the antibodies they are supposed to.
From what I understand, each of the big 3 immunoglobulins, (IgG, IgM, IgA), play a different role. I’m not sure what risks having just IgM low causes. I would ask the MS neuro about that. And if you can’t get a decent answer, see if you can get in to see an immunologist or infectious disease specialist. Those specialists have the most insight into the workings of the immune system in my experience.
Good luck! It’s good you are staying on top of it!
I will, thanks.😊
I'm glad you're feeling better.
I guess the pain plan didn't go well 😵💫😞 Of course 🙄🤬 I hate this hell ride you have been on 😭
Your win has to be out there somewhere 🙏 Kesimpta is an easy shot to give and it's nice to not go for infusions. I hope it works for you! It was a horrible experience for me and I wish I had taken my neuro's advice to try Mavenclad then instead 🤦♀️ My body doesn't like the antiCD20's 🤷♀️ It's out of your system quicker than O if you're worried about more drama.
With so many DMTs out there now, why are you being given a choice of only 2? Seems like there would be other options besides Copaxone and Kesimpta. If Copaxone wasn't slowing your MS down and Kesimpta is so similar to Ocrevus I would want to try one of the others. Maybe even a clinical trial with one of the BTKI drugs if any are still open?Good luck and I am glad you are starting to feel better
It appears that BTK meds kinda fell over somewhat not that long after leaving the starting gates in the Phase 3 clinical trials..
merckgroup.com/en/news/evob...
mssociety.org.uk/research/l...
It was found that evobrutinib was no betterto the teriflunomide (Aubagio) comparator used in the trials.
Specific issues included concerns over liver damage:
mstranslate.com.au/btk-inhi...
"There have been some safety concerns identified in some participants in ongoing clinical trials. These safety issues relate to potential side-effects on the liver caused by these therapies. In late November, the US FDA put a partial hold on clinical trials using fenebrutinib due to these concerns. Earlier this year, these liver side-effects were also observed for evobrutinib, which halted further trials (the ongoing trial was allowed to continue). Similarly, tolebrutinib trials in myasthenia gravis were stopped, with drug-induced liver injuries provided as the reason."
(See the MStranslate link above for the whole article - I highly recommended this website - it's put together and managed by a former MS researcher, he also does reports on-site from ECTRIMS etc.)
I am so glad you are feeling better. Good luck with your choice of DMT!!
So glad you are better!
good luck I hope everything works out
Jes, I'm sorry you had such a rough time. I'm glad you're feeling better.I would like a word with whoever named the MS hug! It actually makes it sound pleasant to be squeezed half to death by your own body.😠
IVIG
Isolation: How are you dealing with it?
This is a day of winning 💪
