Mavenclad

[Sandydemop]

Does anyone here take this DMT? My neuro is recommending it for me to stop the decline as soon as the pandemic is over. If you do, please share your experience with Mavenclad. Not that it's going to be soon but one day...maybe this will all be behind us.

[Turtlepie]

I finished year 2 of mavenclad back in March and I am very happy with the decision to take it. I had some side effects. But over all I feel good

[Sandydemop in reply to Turtlepie]

hi Turtlepie can you share more details? how did you manage with the vaccine and Mavenclad? what side effects? how did it help? thanks very much

[Turtlepie in reply to Sandydemop]

I had to wait till my blood count levels were back in normal levels before I got the covid vaccine. The side effects after year 1 week 1 was throat infection that took several rounds of antibiotics and steroids to clear up. When I finished year 1 extreme fatigue set in but after 6 months I got energy that I hadn't had in a long time. Year 2 was better but after week 1 I got covid and had to put off week 2 till I was feeling better I finished up March 1st and the fatigue set in but this time it wasn't so bad and only lasted about 5 months. I did during year 1 have a nasty taste but that stopped after I finished taking the pills. I recommend that you drink lots of water when you take the pills and through the day. Some people get headaches but I never did but I drank water lots of it all day and that might of helped. I also recommend that you put the pills in like a shot glass and toss them to the back of your throat and really fast drink your water. I hope this helps you and let me know how you do with it

[Sandydemop in reply to Turtlepie]

thanks Turtlepie I'm not on it yet. I just wondered what to look out for.

[Turtlepie in reply to Sandydemop]

I follow a mavenclad group on Facebook and there are some that have really bad side effects. I forgot to tell you I dud notice an increase of hair loss but it stopped

[Sandydemop in reply to Turtlepie]

a big hair loss?

[Turtlepie in reply to Sandydemop]

No just about double what I normally do there was no baldness

[wolfmom21fl in reply to Turtlepie]

that nasty taste, were you ever checked for thrush?

[Turtlepie in reply to wolfmom21fl]

No. It went away a day after I finished up the pills

[karenmbloom]

I just finished year two. My MRI showed no new or active lesions. Happy with decision no side effects

[Sandydemop in reply to karenmbloom]

thanks!

[Sandydemop in reply to karenmbloom]

what happens after year 2?

[wolfmom21fl]

i would suggest that you go and do as much research as you possibly can about this drug before you consider taking it. There are a lot of tests that need to be done before hand. They will include a mammogram and some other cancer screenings. I have a very long family history of various different cancers in my family so after much research I decided against this one.

[Sandydemop in reply to wolfmom21fl]

thanks for taking the time to share with me. My mother died of MS and lung cancer and maternal grandfather died of lung cancer. Both were smokers so there's no other cancer in my family so i'm leaning towards it. Yes, it could give me cancer. IDK. Really I don't like any of the options. This one seems the least bad. what did you end up choosing?

[wolfmom21fl in reply to Sandydemop]

at the time I chose Mayzent, which ended up being a disaster as well. It tanked my immune system so badly that 9 months after discontinuing that my white counts are still not back to normal and I am not on any other DMT yet. I got so sick and it didnt work anyway. I ended up with significant progression shown not only by symptoms but on MRI's as well. I had an abscessed tooth, multiple herpes outbreaks, respiratory infection, skin infection, UTI's and limited to no response to intervention medicines.. i was not responding at all to 2000mg a day of penicillin for abscess and then while on the that anti-biotic, i got this huge pimple up inside my nostril that was so large it blocked off the nostril.. At that point i stopped taking the Mayzent. My body needed a break after 14 months of that... as i said.. it has been 9 months and my immune system is still not back to normal

[kdali]

There’s a great group on FB you can learn from, and Gavin Giovanonni talks about it a lot. I chose it for my next med, whenever that time comes. GL!