Last reply 4 weeks ago
Mavenclad

Hi i was diagnosed with RRMS in 2012 when i was 26. Now 33 I’ve tried Copaxone, Gylenya and am on my second year of Mavenclad. With Copaxone i had a relapse and never felt any relief. Also i have permanent divots in my legs and arm because of it. Gylenya I was happy with but still finding symptoms were there. Then I was told about Mavenclad. Year 1 was un-freaking-believable! Quality of life went from 40 to 110! However 3 days before starting my second year dose (started today), the left side of my tongue became numb. Not concerned really because knowing my body, it’s a flare up not a relapse. But I am loving Mavenclad! Anyone else liking this?

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the β€˜x’.


stumbler
1 month ago

@tpenner86 , it’s good of you to share the positive feedback with us.


londonlad
1 month ago

@tpenner86

I was grateful to see your post about your positive experience with Cladribine. I am due to make the switch from Tysabri in the upcoming weeks/ months, and it always helps to hear the good stories.

while there are some posts on shift about the drug, compared to the other, more established DMTs, as its relatively new still, it doesn’t have much press, negative or positive.

if you don’t mind, a few questions.

Did you work while going through the treatment?
Did you experience any side effects? ( The most common, I seem to have read is fatigue levels increasing, which would make sense given the body is being put under a fair whack of stress, albeit in a managed level.

much appreciated
LL


lindsay_muir
1 month ago

@tpenner86

Hi! I’m starting my first treatment of Mavenclad in 2 weeks and I also would like to know if you took time off work while going through the initial treatment or if you didn’t would you recommend it looking back.
thank you for sharing!


chezy17
1 month ago

My first year of Cladribine didn’t go aswell as the second year, I felt tired and achy but I had a lot of other stuff going off. I was also taking hey fever meds which I think were reacting with my MS. This time round, after the sickness from taking the meds, I’ve felt good 😊. I used to want to nap for an hour or so at times, but hard when you’ve got kids but not so much now. I do have a lot more energy but for me it’s difficult to pin point if it’s that or from emotionally letting alot of stuff go 😊.
For me, other than fatigue, I don’t really suffer from it which is good because I’m working, studying and bringing up my two munchkins so I need all the brain power and energy I can find πŸ˜‚πŸ˜‚.

Good luck with it, may feeling well continue 😊.

Oh and no you do not need time off for it, just keep eating as I felt like I had a morning sickness πŸ˜‚.


chezy17
1 month ago

Sorry, realised my phone likes to change my spellings from time to time πŸ˜‚!


tpenner86
1 month ago

@londonlad, @lindsay_muir, @chezy17
I don’t work anymore. That was my hardest challenge with MS. I’ve always worked since I was 13 and when i was pregnant I had 2 jobs. But when I had my first relapse I was paralyzed on my whole right side so, thinking it was forever, I applied for disability. They pondered about it for a year and was denied. But my neuro and local MLA (i live in Alberta) fought for me and i was approved after a year and a half of fighting. So that makes my switching to other drugs easier.
… Sorry I always feel i have to explain to people WHY I don’t work, “because I look fine”.
It did make me tired but that was while it was “rebooting” my body. But that lasted maybe 3 weeks after the last pill. But after I had to find things for me to do because I had so much energy! Coffee at my moms is a regular thing now!
I’ve thought about going back to school because I feel i can keep more in my mind!
… Which is something people love to tell me “Maybe you’ve forgotten, you know because your MS”.
So I really enjoy Mavenclad! Its given back somethings I had lost


chezy17
1 month ago

Forgetting things comes with the territory of balancing life and so many plates. If I don’t write it down, I don’t remember and that’s it but if I didn’t write it down before I had MS I still forgot πŸ˜‚πŸ˜‚. I’ve been lucky in respects with my relapses being sensory so far, hopefully it keeps it quiet for a while 🀞.
Learning keeps your brain ticking, I started my degree in September, I want to teach. I already work in a school but would like to teach, I just thought life is too short not to try.

Good luck if you decide to study 😊.


melissa-g
1 month ago

I’m finishing my second year of Mavenclad at the end of the month! It’s gone pretty well for me also, and I’m hopeful that it will be good news next MRI πŸ™‚


londonlad
1 month ago

@tpenner86 @melissa-g @chezy17

thank you all for sharing your experiences

I must admit, having been stable on tysabri, the change comes with some nerves but I am also a little excited and some of the liberation that comes with the new medication. Also, it also seems to be effective too.

I am awaiting a few vaccines in the next few weeks and then should know my target start in soon. πŸ™‚

@lindsay_muir best of luck with embarking on this new journey too!


lindsay_muir
1 month ago

You guys!!! thank you so much for all the great feedback. I’m a yoga teacher and waitress and had to reduce work to part time since I was diagnosed August 2018.
so maybe I’ll take a 2 weeks absence just to give my body rest, but I’m really glad to hear I can keep trucking along. Work keeps me sane !

I’ll post my experience and may ask more questions as I go πŸ™‚


londonlad
1 month ago

@tpenner86 @melissa-g @chezy17

one more question if you don’t mind? πŸ™‚

Did you take vaccinations prior to the treatment?

Thank you!


chezy17
1 month ago

@londonlad I had to have a shingles vaccine mainly because it’s one of the side affects and I’ve had chicken pox 3 times as a child. I always seem to get a cold when I’m around it as an adult so they gave it me as a precaution.


melissa-g
1 month ago

@londonlad I did not need any vaccines prior to starting. I was set to have the MMR vaccine but was told to wait until after treatment as it would have had to delay my starting


londonlad
1 month ago

thanks @melissa-g & @chezy17

I’ve been told to have pneumonia but shingles isn’t prescribed as such but can have if I want to.


tpenner86
1 month ago

@londonlad

I did have to get all my vaccines but no LIVE vaccines.
But at the end of my first year I got the shingles vaccine because I felt weird tingles on my face. Just incase!


daveo
1 month ago

Hi,

I’m about to start year 2. First year has been really positive for me. I was on tecfidera, had a relapse, and started mavenclad. Im so pleased that my neuro suggested it. No more flushes or planning taking pills with large meals. I’ve had no relapses. I feel like symptoms have reduced. After my first relapse I was left with a pain in the right side of my face. It was still there with tecfidera, but stopped a few weeks after mavenclad. I understand that this may be coincidence but it might not. The more I read about the data from the original cladribine trials the more positive I feel about it.

Good luck with it all.

Dave


londonlad
1 month ago

@daveo

that’s really positive to hear. thank you for taking the time to share.

I have read up quite a lot about the medication and it certainly ticks all the boxes I am looking for, so I am hoping I respond equally as well.

this study I read tonight, really helped with my need for confirmation bias πŸ™‚

https://link.springer.com/article/10.1007/s40120-019-0129-0

cheers


daveo
1 month ago

https://multiple-sclerosis-research.org/2019/05/cladribine-is-cladribine-is-cladribine/

Here’s a good one, cladribine based. This is a really good site. Full of stuff.

Thanks for your link. I’ll have a read.

By the way, I was told explicitly not to have the pneumonia jab. Why can’t the guidance be consistent!


londonlad
4 weeks ago

hi @daveo

you are right about the guidance not being consistent – my MS nurse told me I don’t need shingles but did need Pneumonia … but so much conflicting info everywhere.

Oh well, I am seeing my neuro and MS nurse this week – so ill make sure all is good. Hopefully ill be told that I start in around 1 month from now..

excited but equally nervous about the drug… I suffer a little from anxiety and overthinking things, and probably will be relieved once I actually start.

I am about to start a new job – and then take the medicine… i hope i can make it through without too many side effects/ hiccups … fingers crossed heh…

Did you work when you took the treatment?

@lindsay_muir

Have you started your treatment? all the best πŸ™‚ let us know how you are getting on!


daveo
4 weeks ago

Hello @londonlad

I worked through it. A nurse will call you each day to make sure you are OK. During the first week I told them that I was suffering from nausea as a side effect. In hindsight, it was nerves. I had no side effects at all.

You’ll be fine.

Dave


lindsay_muir
4 weeks ago

@londonlad hi! My start got delayed due to blood results that were a little low etc. So cross fingers I start mid Feb. ! Let’s keep each other posted. FYI I got the pneumonia shot and a flu and a HIB shot…. enough shots lol
so I guess it might go by province or country etc depending on what’s circulating in your area even time of season.


londonlad
4 weeks ago

@daveo

thanks mate…. cheers for the positive vibes. πŸ™‚ I am no longer feeling worried but actually excited to make the change .

@lindsay_muir – for sure, I am due to start a few weeks after you, so we can go through the journey at a similar time…

Join Shift.ms to reply to this post.

Become part of the community so you can chat, compare and learn from other MSers.