Neuropathy

[Workerbea]

I was taking Aubagio for seven months and realized I was having more severe numbing in my feet, legs, hands & arms. I was trying to understand this and had the testing for neuropathy. I read there is a small percentage of people taking Aubagio, where neuropathy can develop. I'm off of Aubagio now and taking Cholestryramine to get the Aubagio out of my body in 11 days vs. up to 2 years without. I'm concerned about taking another drug. Vumerity has been recommended. Has anyone had a simular experience with Aubagio and is anyone on Vumerity? Many thanks for your thoughts.

[Jesmcd2 CommunityAmbassador]

Hi Workerbea love the name!☺️ I'm not on any of those meds but I know there are some here that are... I just wanted to say hi! And welcome to the family! Please feel free to jump in anywhere! 🤗💕🌠

[Workerbea in reply to Jesmcd2]

Thank you for welcoming me to the group! I'm glad I'm no longer taking Aubagio even though it was keeping my MS stable. The Neuropathy was a big deal.

[kycmary]

Sorry I have not heard of vumerity before, but welcome to our craziness anyway

[Workerbea in reply to kycmary]

Thank you! I've decided not to take Vumerity. I'm concerned about those side effects too.

[Jtara in reply to Workerbea]

Hi, thanks for this thread. These are the two meds my doctor is recommending. Can I ask about the Vumerity side effects?

[mrsmike9]

I have been on Aubagio for years and never had a problem. Hope yours clears up soon!

[Workerbea in reply to mrsmike9]

That's good to know Aubagio is working! Hoping all continues to go well for you!

[wolfmom21fl]

I was on aubagio before and about to restart it. I didnt have neuropathy begin during my time on it. I already had it and it remained active and is still there. the nerves do wierd things in my body. sometimes it feels like i have thick wool socks on and i cant feel anything on my feet, including the floor under them. Other times it feels like someone is following me around with a blow torch everywhere I go even tho i have ceramic tile floors. its maddening. other times it feels like I am standing in a puddle of water with water dripping down my ankles. Suffice it to say that none of this is real but it drives me nuts. When my feet feel wet i have gone as far as touching them to make sure.. it's that realistic feeling.

[Raingrrl in reply to wolfmom21fl]

I have similar sensations from neuropathy in my lower legs and feet. I’ve never been on Aubagio so mine is just MS doing it’s thing. I especially hate the feeling of my skin being wet or as if water is dripping down when neither is true.

[wolfmom21fl in reply to Raingrrl]

it is maddening! This has been going on for quite some time even before Aubagio so I dont think Aubagio really had anything to do with it.

[Workerbea in reply to wolfmom21fl]

Thank you for sharing your experience. MS also gives me weird sensory feelings like bugs moving on my legs...With the reality of ticks it's worth checking out.

[CV97]

Workerbea I was on Aubagio for over 2 years. I now believe that my increased neuropathy was likely a result of Aubagio, and not just progression, as I had assumed. Although I still have neuropathy, I feel it has improved since stopping Aubagio / starting Kesimpta 9 months ago.

I have significantly less back pain and my bladder is far better behaved as well. I noticed improvements as I completed the washout (before starting Kesimpta), so I feel pretty confident Aubagio played a part in my discomfort. My neurologist did not do any testing, so it's hard to pinpoint the cause.

[wolfmom21fl in reply to CV97]

Thats interesting. I have worsened all of that since going thru 14 months of Mayzent and now 7 months of nothing. Everything is worse. It was already getting worse when I was on the Mayzent and I had a few relapses or worsening of symptoms while on the Mayzent. Not sure I can even classify them as relap[ses because I am totally convinced I have ever reached remission since I have been off of the Tysabri some years back.. I am SPMS now and i feel that I may actually have been misdx'd to begin with and may be PPMS and never really have been in remission. Its like my progression has steadily marched forward except the little time i had when I was on Tysabri. which I no longer qualify to take. The Mayzent was a disaster! I will never go back to a DMT that is going to tank my immune system the way that one did. My latest MRI's show significant progression so I am certain that medicine wasnt working anyway.. so all the side effects i suffered were for naught anyway.. UGH..

[Workerbea in reply to wolfmom21fl]

I'm so sorry to hear things have worsened for you especially taking Mayzent. I'm finding it hard to figure out which drug to try since there can be so many side effects. I hope your immune system can be strengthened, and your MS progression slows down.

[wolfmom21fl in reply to Workerbea]

it really is difficult. Aubagio and Copaxone are the only 2 that do not gravely affect the immune system. Aubagio can cause liver damage and for the first 6 months at least you have to have liver panels done every month to keep an eye on that. I have some skin issues, thanks to Mayzent that have not resolved and I dont want to agravate them with injections so i am looking at Aubagio..

[wolfmom21fl in reply to CV97]

how is Kesimpta working for you, btw? It was one i had been interested in and is made by the same company as Mayzent. Just curious

[CV97 in reply to wolfmom21fl]

I had to do bloodwork every 3 months for a while and then eventually every 6 when on Aubagio. I haven't had to do any bloodwork since starting Kesimpta last April. I did have pneumonia a couple weeks ago and the dr treated it pretty aggressively due to bcell depletion from Kesimpta.

I think Kesimpta is a good piece of the puzzle for me. Last spring, I couldn't imagine making it through a full school day of work this year (we had shortened days last year). Working full days again has been rough (mostly my back hurts froom crappy chairs), but overall, I'm making it through full days ok. I started Ampyra (generic) in August, which is another piece of the puzzle that's working well for me at this moment. I also started seeing an MS Specialist in August.

I've just added in swimming a couple times a week (2 weeks in so far, just walking laps in the pool right now). I can definitely feel it in my legs and am hoping it really helps improve my endurance.

This week, we've been working on our bathtub surround walls. What SHOULD have been a 1 day project is currently on day 4 because old houses are just difficult to work on...

I have been up working on the bathroom (with my husband) until 1 or 2 am for 3 days so far! Me! Up past 10?! IMPOSSIBLE without Kesimpta and Ampyra, I'm sure of that! I'm wide awake by 8 am as well, and have absolutely no idea how I'm even pulling it off. This is definitely the best my body has felt in a long time.

I'm looking forward to resting for a couple days once this adventure is over! Then, it'll be back to work everyday until spring break!

[wolfmom21fl in reply to CV97]

FYI - regarding those crappy chairs.,, if you request an accommodation they will give you a better chair or allow you to bring one yourself.. it is a reasonable accommodation under ADA guidelines

[CV97 in reply to wolfmom21fl]

Yes! I've been trying chairs that are available first. I have a small desk in the classroom that I spend most of my time in. It had a hard plastic chair. I swapped it with a smaller cushioned pneumatic chair around Thanksgiving. That definitely helped, but if it's not enough then I'll let my principal know.

Part of the problem is that I work in 3 different classrooms, so there are multiple places with crappy chairs in opposite ends of the building.