For Anyone Interested, I Have Completed a Summary of My Year One, Treatment Week One on Mavenclad

[CatsandCars]

If anyone is curious about what it's like taking Mavenclad, I've written a summary of my experience here:

healthunlocked.com/mymsaa/p...

I will be updating it periodically.

[Xvettech]

thank you for the updates. I hope it all goes wonderful for you!

[CatsandCars in reply to Xvettech]

Thank you. I appreciate that!

[lbenmaor]

I hope the Mavenclad helps. Leslie

[CatsandCars in reply to lbenmaor]

Thanks, Leslie!

[lbenmaor in reply to CatsandCars]

You're Welcome.

[kdali]

Congrats! Halfway done with meds for the year! 🎉

I read your updates! I tried the morning thing and it was miserable 😵‍💫 5pm was my sweet spot, but needed an early bedtime. Sleep was glorious, morning energy was amazing, and Mavenclad dreams are so much fun! 🥰🦄

I also have rosacea and moved through several periods of worsening and recovery during the phases of treatment. I did the diet things, but noticed nothing different, and perhaps it's my type of rosacea that it doesn't work on 🤷‍♀️

My dermatologist recommended putting afrin nasal spray on my cheeks, and this helped the burning sensation. The reason he does this is because the same exact medication branded for rosacea costs $600. There's also a $400 face wash 😵‍💫 I had much worse issues with my face on other meds, but the worst time during Mavenclad was around week 12 the first year and week 10 the 2nd year. Afrin is worth asking about!

I hope this info helps you!

[CatsandCars]

Thanks, kdali. Your description of evening dosing sounds more fun!😊

I really appreciate the rosacea info. Afrin makes sense, because I think it causes blood vessels to constrict, so I can see how it would help the redness aspect of it. Which goes hand in hand with the burning. I'll definitely check with my dermatologist about it, especially now that I know it may get worse! 😯

[kdali in reply to CatsandCars]

I was so excited about the dreams for year two, could not wait! 🤣 If you do try evening, it may be a good idea to expect an extra hour of sleep. I was averaging 9-10hrs 🎉

I hope yours agrees it's worth a go, or maybe something even better. It didn't help my red much, but the burn left...unless I used anything with sunscreen in it 😵‍💫 I bought a red light device from Amazon on sale and then forgot to use it, so that may be an option also 🤷‍♀️ It came in waves, so it wasn't a constant issue.

[CatsandCars in reply to kdali]

That's surprising. The dreams are a well-kept secret, although I haven't been on the Facebook group! Mine is constant. It's not horrible, but it is bothering me. I put some foundation on, and had to take it off, because it hurt. I certainly don't want to go around without makeup on. 😱

I have time in my schedule for some extra sleep, kdali! That would be fine with me. Thank you very much for the tips. 😊

[kdali in reply to CatsandCars]

There are a few of us in the FB group who have the dreams, and some will say vivid or disturbing. I had some of those too the first year. I was late to pre-k and missed the bus 🤣🤣🤣 very upsetting!

Oh wow! 😵‍💫 Maybe you could try a tinted moisturizer followed with some powder. I also use a little green goo on my cheeks when it's really red.

[CatsandCars in reply to kdali]

"Late to pre-k and missed the bus!" Too funny. 🤣 You are pretty young in your dreams!

That's a good suggestion. I'll have to see how it feels, and give it some thought. I usually just use my fingers to put it on, and perhaps I'm not as gentle as I should be. Maybe I'll try dabbing it on with a sponge and see if that goes any better, and take it from there. It's easier than trying to make everyone look away. 😜

[Xvettech]

I hope you get relief soon! 🤗

[swiftpoet]

Overall, your thoughts?

[CatsandCars in reply to swiftpoet]

There was a lot to remember. You can't take any oral meds three hours before or after Mavenclad. I'm used to taking meds when I need them (although it's been a lot lately) and to avoid needing meds for pain and spasticity and not being able to take them for up to six hours, I had to take both baclofen and pain reliever exactly six hours apart to have it work with that window. I had to take the Mavenclad exactly 24 hours apart, and I had to push water constantly. I was already feeling impaired from those existing meds, and Mavenclad hit me pretty hard as well in terms of head sensations and not being able to remember what I was doing from one minute to the next. But I didn't get headaches or nausea, two things I dreaded. So I wasn't really able to function very well. But I didn't have to go through it every day, indefinitely like most meds, just five days at a time. Five days is not bad. When it's time to do another treatment week in a few weeks, I feel like I'll be prepared and ready to go.

[VamsPenny]

I took mavenclad about 5 yrs ago if it wasn’t for me taking that covid would have killed me it’s a life saver, I haven’t needed any MS meds since !!

[CatsandCars in reply to VamsPenny]

That's amazing! I am very glad Covid didn't kill you, and that you are still doing well five years later! I hope that I am as fortunate as you have been, and I hope that you continue to do well for a long time to come!

[VamsPenny]

well thank you and I hope you do great with it. The same way I did. There is hope out there. I’ve been doing great and you’re gonna do great as well.

[Tazmanian]

Congratulations

[CatsandCars in reply to Tazmanian]

Thank you!