Mavenclad

[Sandydemop]

Hi Group, after my last neuro appt. my doc is willing to try me on a stronger medication due to most likely a new dx of secondary progressive. So i come to the experts. Anybody have experience with this drug? Thanks in advance.

[erash]

No experience but I hope it helps. Keep us up to date. 👍

[Sandydemop in reply to erash]

thanks Eliz

[twooldcrows]

i haven't tried but ha try anything so it makes your life easier living with MS...i haven't been on it but have had several kinds for trying to what would work for me ....good luck hoping it works great for you ...love and much happiness ...

[Sandydemop in reply to twooldcrows]

thanks 2

[Turtlepie]

I finished year 2 March last year. I am doing good. I got some new energy that I hadn't had in a long time about 6 months after finishing year 1. I still have problems with things like spasms, headaches, fatigue, memory problems and I get lost in my words. But for the most part I feel good. The side effects weren't bad. Bad taste and some hair loss not remembering any others right now. Just drink lots of water when taking this medication and not just a sip or gulp when you take the pills. Drink at least 8 + onces and continue to drink alot during the day. I took my pills in the morning.

[Sandydemop in reply to Turtlepie]

Hi Turtle. Good advice. Lots of hair loss? what's better about it besides energy? Thanks

[Turtlepie in reply to Sandydemop]

The hair loss was just about doubled the amount of what we normally loose but after about six months of each year it went back to normal. I liked the idea of taking 5 days worth of pills 1 month another 5 days a month later and doing that again a year later. They say that we shouldn't have to take any more medication ever. I will have to say that if I start having problems that I have decided not to take any other medications. I just plan on treating my symptoms.

[Sandydemop in reply to Turtlepie]

hi Turtle, Huh, i may want to take more meds later. Is taking no DMTs part of the Mavenclad agreement?

[Turtlepie in reply to Sandydemop]

It is what they say they expect to happen. If you start having problems you will need to take something maybe even more mavenclad. Not taking any more DMTs is just my choice. I had too many problems with side effects on other DMTs and I feel the other DMTs will be that way. I refuse to do infusion. They have a hard time starting IVs and I wouldn't get a port put in

[Sandydemop in reply to Turtlepie]

I don't know what the future will bring but who does? 2024 seems a million miles away. I'll be 61. my doctor said maybe there will be some new re-mylenation drug available soon.

[Turtlepie in reply to Sandydemop]

I will be 65 years old in October and I hope that I keep going like I am. Maybe medical marijuana for me

[kdali]

No experience yet, except the getting started wait part. GL!! I hope it works for you! 🎉

[Sandydemop in reply to kdali]

thanks K

[kid7frost]

I have done 1st week of it gave me insomnia so had to take at 6am also gave me major headache lasted for 3 months after the week of medication Mavenclad not looking forward to my next dose have been told by MS Society that insomnia is expected but headache is not a normal side effect I'm one that reported it but I'm not the only 1

[Sandydemop in reply to kid7frost]

thanks kid for the heads up of possible side effects. i hope your next dose goes well.

[Koalagreen]

Mavenclad ? No, but I hope you are well.

[Sandydemop in reply to Koalagreen]

thank you

[KipAngCan]

Hi!! I finished the first two doses and had no real side effects. I’ve been wondering about others experiences too. I did Ocerevus for 2 years and it wasn’t doing anything for me. My neuro referred me to another in his practice with more MS experience. He had a great analogy. He said mavenclad is smaller so it gets into the spine and brain, unlike Ocerevus, which is bigger and can’t. It’s like sending good cops after bad. It takes awhile but eventually they eradicate the bad ones. I get my second round in December so fingers crossed. I haven’t really noticed much difference except that I’m not getting worse. MS hit me at 48 like a freight train. It took nearly 2 years to get a diagnosis in which time, I lost everything. My ability to work, drive and walk without a walker. I can’t even walk and carry anything. Basically my while life blew up. This disease definitely sucks!! Good luck with your treatment!! Hope you notice good results fairly quickly.

[Sandydemop in reply to KipAngCan]

thanks Kip, i relate. diagnosed at 48 but i thought i would avoid the more serious symptoms because i was diagnosed so late. I also got similar info from my doc. Mavenclad can go through the blood brain barrier but Ocrevus cannot. not getting worse sounds like something i can be grateful for. Please keep us informed on your progress.

[stepsforNeeC]

No, hope it helps you. Keep us updated! Prayers and loveNeeC

[Sandydemop in reply to stepsforNeeC]

thanks for the prayers NeeC. Every single prayer is appreciated.

[bxrmom]

I'm not on it but I believe others on the group are. Good luck. I hope it helps if/when you start. Keep us updated!

[Sandydemop in reply to bxrmom]

thanks bxrmom. Probably in October.

[tnolan2006]

I took it about 5-6 years ago. It has had long lasting effects for me. My memory B-cell levels have remained very low, so it's behaving as intended. Super easy to tolerate. I've been DMT free for years.

My MS is very advanced, and it hasn't prevented the slow continual nerve damage I have , so more drugs to prevent that need to be developed. You can absolutely take other DMTs or further cladribine after your initial dosing regime.

[Sandydemop in reply to tnolan2006]

thanks Nolan. good to know.

[irishdiva1115]

I actually took Mavenclad right after it first came out. I found it pretty easy you take it for 5 Days 1 month the next month 5 days then one year later five days one month five days the next and then for 2 years they monitor you I am now in my fourth year and so far my MRI'S have been stable I didn't have any side effects that weren't manageable. I was told to drink a lot of water to help it pass through the system and not get headaches. I believe my second year I had to take omeprazole but that was temporary. Good luck with whatever you choose I hope all works out well!

[Sandydemop in reply to irishdiva1115]

did it upset your stomach Irish?

[mrsmike9]

No, but good luck!

[Sandydemop in reply to mrsmike9]

thanks Mrs. Mike

[Cutefreckles72]

Hi, sorry no experience with Mavenclad. Currently on Ocrevus and I have PPMS.

[Neworleanslady]

I’m thinking about asking about trying mavenclad because i feel like my symptoms are progressively worsening since starting ocrevus

[Sandydemop in reply to Neworleanslady]

Please let me know if you decide to go for it and how it goes.

[Neworleanslady]

Thank you. My next neuro appointment is sept 1st

[Iona60]

I've been doing well on Ocrevus for 4 years, but want to switch to mavenclad. Old neuro was on board. Just moved cross country. New, very young neuro, says that after trials data from mavenclad show increased cancer risk. Won't let me switch. Guess I'll stay on O. Good luck.

[Sandydemop in reply to Iona60]

thanks you too. If you're doing well on O why switch?

[DIsneyQueen]

Hi Sandydemop, I am 68 and due to begin my 2nd year of Mavenclad. I was on Ocrevus for about 3 years and it didn’t wo

[DIsneyQueen]

Opps work all that great for me so m

[DIsneyQueen]

My neurologist switched me to Mavenclad. No side effects with it and lots of support from MS Lifelines

[Sandydemop in reply to DIsneyQueen]

good to hear, thanks