I have been having a horrible time with new symptoms and craziness of family and friends in September. It took 3 reschedules to finally get the MRI's done and now i wish a little bit that i had not them done at all. they were horrible! I got my results yesterday and i have to say I am largely stunned! The neck still is showing 6 lesions and remains largely unchanged with 4 herniations, of which one is quite bad causing the bone to press into the cord slightly. The brain scan however, is another matter. There were not only more lesions over all at 142, up from 130, but i have 2 NEW lesions on my brainstem, for a total of 6 now. I am unsure what is going to happen from here. I am 63. I have issues with my skin so Copaxane is a no go. I have a very high cancer risk in my family tree, especially of breast cancer so Mavanclad is also a no go. My JCV titers are approaching the cutoff for Tysabri at 1.40, so that is no longer option either even tho I did quite well on Tysabri. Aubagio is the only other choice i think because the others tank the immune system so badly. I was on Mayzent until the end of April and I got sick and had many infections. Abscessed tooth, cuticle infections, numerous herpes outbreaks, acne so bad i could barely open my mouth to eat. My lymphocytes tanked at 410 and overall white count was right around 4K when i stopped taking it. I was taking 2Kmg of penicillin for the tooth and had no response at all. I was done. So now I am told Aubagio or Copaxane are the only 2 that do not tank the immune system that way.. Where do i sign up.. I have to say I am very much afraid with these new lesions but at the same time it explains a lot of the new symptoms i have been having.. UGH.. I know the brainstem controls all of the autonomic functions like breathing, etc.. so that is very scary, but the dizziness, feeling that my left shoulder is asleep all the time, the burning in my feet and lower legs, hiccups constantly.. this sort of thing is driving me nuts.. but now i know why. not that it makes feel better but I know at least.. thanks for letting vent and dump. Hope this find everyone else doing as well as can be expected
Apologies for my absence: I have been... - My MSAA Community
Apologies for my absence
Was on Aubiago for over two years and worked great with NO side effects. Started on 7 for two weeks then 14 👍😉🙏🤗 Ken 🐾🐾
I was on it too but only for about 6 months. Not sure i gave it a fair shake tbh. I want to try it again to see... for a longer period. I dont think I have many options left at the moment. I know there are a few coming down the line in phase 3 studies now but until they are approved I guess this is best option
i hope things get better
i'm so sorry you are struggling. it's a double edged sword for sure, is knowing. i often imagine the more active spinal lesion calmly eating away at me while in the middle of other activities and you have a tonne of lesions.
i hope the drs can find a workable treatment plan for you.🤗
I am so sorry you are having to deal with all of this. Love and prayers for you.
did you get these new lesions while on Mayzent ? how long were you on Tysabri doing well?
IDK. I had relapses while on Mayzent. Last one being in February and MRI's in Early March showed a few new lesions in the brain and new lesions on the cervical spine. The ones on the cervical spine had never shown up before the October MRI of cervical (also while on Mayzent) so yes. I had been on Tysabri for just over a year when I went in for an infusion and a couple of things were going on.. i had a fever, my white count was pretty high at 23K and I felt like crap.. They sent me immediately for MRI's and JCV blood work and my JCV titers had gone from a borderline .41 to a ,99 in one month.. they took me off the Tysabri until I could stabilize whatever was happening with me at the time.. The MRI showed nothing unusual and no new lesions at the time. Subsequent JCV titer tests have shown the values going up and up.. I am now close to the cut off at 1.40.. i am told once i hit 1.50 i would never be allowed to be considered for Tysabri again. I am not will to take the risk given my age (63) and my previous experience with the Mayzent and everything going on in the world today.
I have been on audacious for about 2-3yrs. I have not had any negative side effects and my MS has not gotten any worse. I hope this helps...
Did your neuro offer an extended dosing schedule when you were on Tysabri? I was on an 8 week cadence during my last couple of years on Tysabri. My JVC index was rising and my neuro was concerned because at the time there was nothing of equal strength that I could switch to. My JVC index dropped during the longer cadence and I stayed on Tysabri until Ocrevus was approved.
The extended dosing schedule might be an option for you if you haven’t tried it.
we talked about Tysabri but again, I am concerned about my immune system tanking again. I got so sick with so many different things at one time on the Mayzent. I never want to go thru that again
Sorry…misread your explanation of the affects of Tysabri. I thought it was just a JVC index issue like I had. Tysabri didn’t screw up my immune system but Ocrevus has really trashed it. I’m so annoyed.
i'm so sorry... it seems O has been hyped up to be the be all to end all but I am not seeing a lot of people talk about the immune system effects... i know it lowers but holy cow.. thats a lot
It’s the dirty little secret about Ocrevus. It’s not a typical side effect but not uncommon either. I might have been at higher risk due to age too. I don’t know really. It’s never been fully explained. There is a warning about becoming susceptible to infections while on it but it was never fully explained to me why that is. Unfortunately, I now know why. 😡
i really hate it when the doctors do not explain everything to us. How are we to make informed decisions about our own care without all the information? My first neuro was like that. He would give vague and misleading info to me about some drugs and not explain things and i would have to research everything before taking it. Like one was an NSAID i think and he told me "If you get a rash, stop taking it'" So i asked the pharmacist about it and he was mortified! He said the "rash" the doc was referring to was a necrotizing rash that could necessitate hospitalization and removal of body parts!!!! I was like WTF?!?!? I never even filled the script.. I immediately sought out a new Neurologist.. but geez.. please, tell us what the risks are so we can make a proper decision about our own care..
You are preaching to the choir!!
Aubagio
I sure hope you start feeling a bit better. Sending warm thoughts your way.
Crap, you've been through hell, you must be a warrior. You're very resilient. I've been on aubagio for three years, no new lesions. The only side effect was I had some hair loss in the beginning but it all grew back and my hair is fine. I am jcv positive too. Best wishes to you that everything stays the same (or gets better) and no more lesions.
LOL.. I am tired/ I have no choice but to keep fighting. I have grandchildren (13 & 15) who need me and still have one daughter. My son passed in 2019 from melanoma, but i know if i give up now, my daughter would be totally and completely devastated. I will keep fighting for some time to come. Aubagio it is.. Bring it on I say!!! LOL
So sorry to hear that your son passed. That must have been devastating. My heart goes out to you. Your right, your daughter needs you. Your grandchildren need you. We have no choice but to keep fighting. I hope the aubagio stops it in it's path. 🌞
oh my you are really being tested on the nerves and how much you can take ...wow hope you have someone there to talk to about all of this ...don't try to on your own ...love and blessings and prayers to help you through all of this ..take care and watch what is going and talk to your doctor to get some help on what is going ...loves and blessings ...
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