@melissag

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melissag

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!

condansmum

@condansmum

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

melissag

@melissag

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

@condansmum

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

@FXMS

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 :P Hope I was helpful. Best of luck!

melissag

@melissag

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

melissag

@melissag

@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

@chezy17

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

@FXMS

@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

@Jami

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

melissag

@melissag

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 :)

melissag

@melissag

@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.

melissag

@melissag

Hi again everyone! So I did end up going on mavenclad, and finished my first round of treatment at the end of December. I was just wondering for those who have done it, how long did it take for your lymphocyte level to come back up? I’m still worried about catching anything and have been careful, but I’m not due for a blood test for another 2 weeks so have no idea what’s going on with mine! Thanks all :)

Sam10

@Sam10

@mellisa-g, I finished my 1st round last Jun. No Lymphopenia, Neutropenia or Herpes so far. 2nd round will be this year. Hopefully you can tolerate it well too.

arknat

@arknat

Hi @mellisa-g, Was wondering how much time you stayed off Gilenya as part of the washout period ? Thanks.

melissag

@melissag

@arknat I had to be off of it for about 2.5 months while I waited for my lymphocyte level to come up closer to 1 (I think I was at 0.8 or 9)

arknat

@arknat

Hi @mellisa-g, Hope you're doing great! How do you feel now after moving from Gilenya to Mavenclad ? I was going to talk to my Neuro this month about switching from Gilenya to Mavenclad. thanks.

DominicS

@DominicS

Have you read the Barts MS research blog? There is an extraordinary amount of info there.

arknat

@arknat

Actually, I have not .. I'll check it out.

melissag

@melissag

Hi @arknat, I'm doing well since the switch, the treatment didn't come with many side effects for me so that was good! I did have to be extra careful around Christmas to try to not catch anything, but got through it fine. I'm feeling the same, MS wise, which I'm looking at as a good thing!

melissag

@melissag

Hi @dimitri I’m doing well, and have finished both two years of treatment now. I had minimal side effects and over all am happy with my decision to switch! Have not had an MRI yet to confirm, but no relapses, so I am happy. :)

dreamstate

@dreamstate

@melissa-g I appreciated this thread. I’m about to start treatment on mavenclad and it provided most of the info I was looking for. All the best!

Athdara

@Athdara

I am about to go on Mavenclad/Cladribine after failing all of the other MS treatments including Ocrevus. My question is how careful do I need to be about getting an infection? I was told that I should not travel for 6-8 months. I do not want to live in a bubble but I also do not want to needlessly put myself at risk. From your experience how careful were you or did you need to be around others. With Covid 19 it adds another dimension. I so appreciate having someone with experience on the drug let me know what they did to balance their health and living life! Take care and thank you

Athdara

@Athdara

I was diagnosed with SPMS about 2 years ago with continued flares.

melissag

@melissag

Hi @athdara I know that most DMD's come with that added worry around lowered lymphocytes etc, and mavenclad is no different. I'm not sure where you are located, but here in Canada I have heard of some doctors holding off on treatment during the pandemic. For myself, my last round came just before it was widely known to be an issue here, (in January) and since then I've just been extra careful. So I've been staying home, wearing medical grade masks when in public, and doing all of the things we should be. I'm sure you will talk to your team to decide what is best for you, but if you do decide to go forward just remember to keep up to date on your blood work to monitor your levels, and stay safe! One thing that I am happy about with Mavenclad is that my lymphocytes are now back up to an almost normal level, instead of constantly being suppressed, which is great for me!

Athdara

@Athdara

Hello @melissa-g Thank you so much for your quick reply, I am in the US but am originally from Ireland. So glad that your lymphocytes are almost normal again. Have you noticed if Mavenclad has helped with the symptoms and or progression? Do you have to take the second years dose exactly a year apart or can you wait 13 months? I ask because I want to travel to Europe next August for a wedding and would not be able to do so if I start now.

melissag

@melissag

@athdara no problem, you caught me at the right time :) My second year actually was closer to 13 months after the first year started as there was some issues trying to put it through insurance that wouldn't accept it. I was told it's fine to delay slightly. As far as symptoms, I went into the treatment not expecting anything to change, but just hoping to not have progression, which so far, so good! I spoke to my neurologist a week or so ago and he told me that I can wait to have an MRI another 6-8 months which will show for sure, but no relapses since starting!

Athdara

@Athdara

@melissa-g how long did it take for your lymphocytes to drop? I am about to take my second round, first year and there is no change in the lymphocyte count. Thank you

melissag

@melissag

@athdara hmm I don’t recall the exact time it took, but for me it was fairly quick. I know everyone reacts differently though, and not everyone’s lymphocyte count go as low mine did

Knights

@Knights

Tyrasabi

Spencerd

@Spencerd

Hi Melissa, is it ok to ask why you're moving from gilenya? Might be that we're in the same boat re wanting to improve mobility we may have lost

fay_mishima

@fay_mishima

I moved from Gilenya to Mavenclad. I am still on the course, but my decision to make the move was because 1. Gilenya was giving me horrid side effects such as chest pains, shortness of breath, and a chronic sinus that still hasn't gone away. 2. Consistency of taking a daily pill was too much to handle I am still new on this Mavenclad so can't say much about it yet.

tnbeavers1

@tnbeavers1

Hello Melissa thanks for the welcome greeting. I was looking for patient views on Mavenclad. I am currently on Tecfidera and have been on it a little over a year since being diagnosed in August 2020. My recent MRI showed a new lesion on my spine causing nerve pain in my right arm and hand. I have appointment with my nurse on Monday and will discussing charging to Mavenclad. This is one on the option that I was offered when I was choosing DMD to go on. Can you give me an update on how it's working for you? Thanks

fay_mishima

@fay_mishima

@tnbeavers1 I've written a review on it. You can find it as a post under my name

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Lowlander

@Lowlander

@Hanavr These posts are worth reading in answer to your question. Hope it gives you some answers.