Last reply 1 month ago
Mavenclad/Cladribine dosage help

Question for those of you on Mavenclad/Cladribine or any neuros on here: I’ve just started on this drug and I’m in the middle of my week five dose, in year one. I’m aware the dosage is very specific according to your weight etc.

My question is: I felt quite unwell on one of my dosage days (unrelated to MS or the medicine itself) and vomited a few hours after taking my cladribine dose for the day. I’m unsure whether I vomited up the pills or not.

I contacted my neuro who prescribed the pills who wasn’t much help, and said if I couldn’t see the pills in my vomit (sorry to be so graphic!) then I had probably absorbed them and it would be ok. But I can’t really be sure… Not to get too revolting but you know, it’s vomit!

I’m not sure if I should just carry on as normal or if I should ask for another prescription for extra pills, which I likely wouldn’t be able to get in time anyway as they’d need to be ordered.

Normally I wouldn’t worry about something like this, but as this drug has such a specific dose I’m not sure if I should?

Any advice?

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stumbler
3 months ago

@systemerror. Vomit! And you brought it up with your Neuro! Ha Ha! 🤣🤣🤣

Personally, I would just continue with your dosage regime. But you may want to register with this site and voice your concerns to them :-

https://mavencladadveva.com.au/welcome/


systemerror
3 months ago

@stumbler wow thanks, I didn’t even know that existed!


amala
3 months ago

Hi
Always report to the provider’s nurse or staff. Call them and tell them.


lechatnoir
3 months ago

Definitely always tell your health professional, but the Tmax for Cladribine absorption is about 30mins, or 1.5h if you took with food.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6373393/

so if you vomited a few hours after taking it, you should be fine.


chezy17
3 months ago

I used to have to keep eating to stop the being sick. I’ve finished year 2 now, hopefully it works, we’ll see 🤞. Could tell the nurse but I think nausea is a common side affect, that and tiredness. One rubbish side affect is that I can’t drink wine and feel fine after anymore or alot of drink coffee, not a side affect I wanted 😂😂.


angela_panek
3 months ago

I just finished my second dose on the 14th of November and I am very ill. I have been nauseous everyday since, exhausted and overall unable to do much.
No advice from the support line or medical staff. I feel very unfortunate in the selection of medication just due to the downtime I have experienced since I started it. I read through some med papers coming through Europe right now defending not recommending this drug due to side effects versus benefits. They just started coming out a few weeks ago. Wish I would have read them before completion of my second weeks regimen. Sorry it’s a disappointment but glad I’m not alone.


sunshine85
1 month ago

Hi @angela_panek I’ve just completed my first year of Mavenclad. I’m having nausea on a morning and feeling tired. I’ve also started with tingling all over my body after the second dosage. Where did you find the reports you mention? I’ve been looking for if the tingling is a side effect and can’t really find much on this. Ive found one website that state to contact your team if you get tingling but I’ve contact my Nurse twice with no return phone call 😔


angela_panek
1 month ago

I was sick the entire month after taking my last dose. The website I was referencing is https://www.mstrust.org.uk/a-z/mavenclad-cladribine
Mavenclad (cladribine) | MS Trust
They have good info. There is more experience utilizing Mavenclad. I have been in my wheelchair more often than I have in 5 years.
I did see my neurologist a few weeks back and she really couldn’t give much advise or comfort because she said I’m the 3rd person on it and she has no first hand experience.
The hotline and my personal nurse assigned by the drug company were no help unfortunately.
I’m hopeful that the new options coming up will work but I have tried almost everything with not much long term success.

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