Last reply 1 week ago
Thankful

Hi there,

I just finished my 1st cycle of Mavenclad treatment…free now for 4 weeks before the next lot
No real side affects…just a little exhausted…more than the usual kind
I could feel burning sensation while swallowing the medication..make sure anyone taking this medication has plenty of water with them…as per recommendation..
It’s frightening to see how toxic the treatment is…I’m confident and hopeful
Due appointment with MS nurse so hoping to get something to help with some things that continue to remind me that I’m an MSer.
Stay safe everyone…face mask and safe distance as much as possible
Happy weekend

Paule

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chezy17
2 weeks ago

The tired feeling is normal, I felt that after I had my first year of it. Second year I felt alot better but then all this happened so mines playing up abit. Think it’s the situation and not the meds but who knows 🤷🏻‍♀️. I think you have to be careful for a few weeks cos of your lymphocytes dropping but I’m sure that can be balanced with Vit D. I’m no expert but since my levels have been higher, I’ve not caught anything 🤞and mine were low after my second year? Anyone know if vitamin D levels do actually play a part?


kcochrane-85
2 weeks ago

Hi I am due to start taking mavenclad in the next few weeks. Was diagnosed in April, which was a shock as I hadn’t been expecting it.
There does seem to be the potential for a lot of side effects as it does seem very powerful. I haven’t heard anyone say how bad the hair loss can be. Has anyone experienced this?
I have started taking a vitamin d spray every day so hopefully this will be effective.


rhona74
1 week ago

Mavenclad is my next possible treatment as well in coming months. I would love to hear peoples experience with any hair loss.


chezy17
1 week ago

My hair was fine 😊.


rhona74
1 week ago

Good to hear that @chezy17!


pauley
1 week ago

Still have hair …
Recently broke out in a little rash so kinda panicked thinking it may be shingles but it is only a little reaction rash that will go soon.
Was very tired,much more than usual,and still am.
Have dates for next cycle and I believe that should be much easier
Good luck all taking this DMT..
wonderful support from the pharma company and ms nurse…
Downloaded the app with reminders and various progression charts
Got reminder calls everyday to remind me and check everything was going ok…


wendyhills
1 week ago

I completed yr2 in March this year just as the pandemic took hold. I haven’t had any major side effects thankfully and my hair loss is minimal apparently biotin helps with hair loss although I haven’t tried it myself. I’ve had a few flare ups with my MS symptoms but no relapses just increase in fatigue. Lots of energy when I wake up (if I do sleep lol) and by lunch time I’m done. This DMT has worked well for my highly active RRMS and once I have this confirmed with my next MRI I’m sure that all in all it has been a success. I do remember before taking it I was extremely nervous of all the potential side effects and the scarey stuff in the information book but I took mine with food and drank plenty of water had a few headaches early part of taking but went really well good luck with your journey x


pauley
1 week ago

Hi @wendyhills

Thanks for that.
Am actually looking forward to getting the next cycle over now and have been contacted by my treating hospital to enter a trial based on the treatment…
Still very tired come the afternoon and still have all my hair which never really bothers me either way.
Stay safe all

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