Last reply 1 week ago
Mavenclad

Hi all!


I’m looking into changing from Gilenya to Mavenclad, and I’m just a bit confused! I’m seeing my MS nurse in a month to tell her what I’ve decided but I was just hoping someone here could help answer some questions in the meantime! 

 

I originally really wanted Lemtrada, even though the side effects were a bit daunting, the possibility of it reversing some damage sounded so promising.


But, I know that’s not a guarantee and it’s just not an option for me, so here we are. 

 

I think Mavenclad could be a good idea for me, but I was wondering, I know it will lower my white blood cell count like the other medications, but once a it’s worked it’s way out of my system, does that come back up? Or does it suppress it long term since that’s what supposed to be helping the MS. I’m just confused because it says after 6 months it’s out of your system! 

 

I’m also a bit nervous of side effects, while probably milder than some medications, once you take it there’s no stopping if things go wrong. That makes me a bit worried! 

 

Any feedback would be appreciated, I know this medication has been posted about before but I didn’t see anything talking specifically about white blood cell count and how people feel long term, side effects wise. 

 

Thanks!

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condansmum
4 weeks ago

Hi Melissa
I took both courses of mavenclad in July and August. I haven’t had my bloods done yet so I don’t know about my white cells etc yet. I felt fine after I took it- a wee bit sick and headachy- like a hangover but nothing drastic. I work in a school so I’m exposed to all sorts of bugs from kids but I’ve not caught anything yet, even though my immune system is low from the mavenclad, so fingers crossed!
I don’t know about reversing any damage🤔 I do feel less fatigued and I’m not going for a pee every 2 minutes! My right leg is buggered- foot drop! It’s not any better but the nurse told me it’s still working on me so we’ll see.
Hope that helps a wee bit!
Anna x


melissa-g
4 weeks ago

Hi @condansmum! Thanks for your reply, and glad you’re doing well!

The possibility of reversing damage was more what I read about lemtrada, but mavenclad is sounding pretty good also. Did they mention to you what to expect with your white blood cell count?


condansmum
4 weeks ago

Hi Melissa,
The nurse from the company that supplies the drug- adveva? kept calling and checking on me and she told me that my white cells will be low( I’m not reliable cos I was wittering to her) and I may be susceptible to infection. So far I’ve had nothing- no shingles, which she said is very common, no cold sores- nada! I must sound like a mavenclad stalker cos I always reply to posts about it! It’s just there’s hardly any info online about it as it’s so new so apologies if I’m repetitive! I’m getting my bloods done in a few weeks so I’ll let you know!
Good luck with it🙂
Anna x


fxms
3 weeks ago

Hello @melissa-g & @condasmum:

Besides having MS, I happen to work at the company sponsoring Mavenclad. I’m not in the UK, but the product is the same, only with packaging in different languages. Adveva is the name of the patient support program currently being held in the UK and other markets.

I am not promoting Mavenclad in any way, but I’ve had so much training that I think I can contribute (in part) to your knowledge on the product. I am going on Ocrevus because I’m not RRMS, but PPMS :(.

Mavenclad has, in my opinion, three main advantages over other medications:

– Its a short course oral treatment for RRMS (only a few tablets/year for only two years, with sustained NEDA rates in almost 50% of patients after 2 years). No EDSS progression on 90% of patients… comparable to any mAb (Lemtrada, Ocrevus, Tysabri).

– Unlike Tysabri (natalizumab), or Gilenya (fingolimod), Mavenclad does not induce continued immunosuppression. It will deplete your B cells, but they will slowly recover over time. This supposedly prevents long-term damage to your immune system.

– No cases of PML were reported in any of the 12-years clinical trials that led to Mavenclad’s approval by the EMA. The most frequent adverse events (AEs) were lymphopenia (which one would expect because its the mechanism of action of the drug) and herpes zoster infection.

One disadvantage that I would point out is that switching from Mavenclad to other therapy can be quite tricky. You’d have to wait for some time before switching therapies, but I guess your neurologist can handle wisely. Also, be sure to check out your family planning before starting: you are advised not to procreate while on Mavenclad (or only in very specific periods of time in between courses of the medication). Doesn’t matter if you’re a boy or a girl 😛

Hope I was helpful. Best of luck!


melissa-g
3 weeks ago

@fxms this is really helpful, thank you! I’m actually in Canada so the UK aspect doesn’t apply to me anyways 🙂


melissa-g
3 weeks ago

@fxms do you know much about the process of going off of Gilenya and onto mavenclad? I know I will have to wait for my white blood cell count to come up, but after that have there been any issues?


chezy17
3 weeks ago

Hey.
I’ve just finished my first week of Mavenclad/Cladribine and the only side affects I had are that I feel like I have morning sickness so I have to eat all the the time! Best way I could describe it 😂😂😂. To counteract the shingles, I had a vaccine prior to starting and I’ve not been on any meds since April. To be fair, I actually felt alot better 😊. I’m back at work for my second week if tablets so I may react differently but as for whether it’s worth it and works, I guess I’ll find out in a year or so 😊.


fxms
3 weeks ago

@melissa-g because in my country most of patients on Mavenclad are switching from interferons (Rebif, Betaseron/Betaferon), we do not have much experience on the process of going off fingolimod to start treatment with cladribine.

However, a few patients have switched from fingolimod to cladribine after 4 to 8 weeks and had no major problems. I believe the main issue here is the fingolimod cessation, that can be quite tricky. If you decide on a change of therapies, I’m sure your neurologist will want to monitor your white blood cell count. A period longer than 16 weeks without treatment would suffice for the cessation of the effect of Gilenya.


jami
1 week ago

Hi!
Im so happy to see this post, I am looking at switching to Mavenclad from Tecfidera but I am quite nervous! These posts were great info

All the best


melissa-g
1 week ago

Hi @jami
I’m leaning towards doing the switch but am a bit nervous too!
I hope if you do choose to switch that everything goes well for you 🙂


nutshell88
1 week ago

Why are you thinking about changing your oral treatment if i may ask
If I ever taken any drug for MS it might be it
But If I ever do I will not changing
Not a big fan of drugs in the first place and I notice our generation treatment is seapping type of drug every few yrs we change it to another and in the end u might get disabled
I’d just like to know what pished you away from gelinya


melissa-g
1 week ago

@nutshell88
I’m considering changing as I was offered the drug when discussing that I will be getting married next year, and asked if I plan to have children. I’m not sure yet if we will because of fatigue, I’m unsure if I would be up for it, but this drug makes doing so a bit easier, as far as treatment goes.

I understand you not wanting to take medication and that is your decision to make, but personally I will continue to take medication in hopes that I can reduce the amount of new lesions and relapses as much as possible. I think many people feel the same way which is probably why many decide to change medications when something possibly more effective is available.

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