@Yorkel505

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Yorkel505

Moving to Mavenclad after one dose of Lemtrada

Hello all, Brand new here. I guess I wanted to share my situation and get some words of encouragement! I have been living with RRMS since 2006. Started with betaferon for 10years, hated the injections. Then got moved to Gilenya for 3 years which unfortunately didn't cover me very well. I had two relapses over two years. Then my neuro suggested Lemtrada in 2019. Strong stuff! Had the first infusion and all was going well... Until I couldn't have the second dose due to covid and some safety concerns. Which left me with 2 years with no treatment... After long screening procedures my neuro will start me on Mavenclad suggesting is quite good alternative to Lemtrada. I will use this post to let you know how it goes. I also wanted to get that off my chest, only so much I can share before I sense pitty from friends

Stumbler

@Stumbler

@Yorkel505 , this is the best place to get things off your chest. Good luck with the Mavenclad.

fay_mishima

@fay_mishima

I just started Mavenclad, I'll keep you posted as I walk through it. I was on Avonex at the beginning, then Gilenya a couple of timed until doctor finally suggested I take Mavenclad.

Yorkel505

@Yorkel505

Hi @fay_mishima. Good luck with the treatment. I am sure it will go well!

fay_mishima

@fay_mishima

Thanks @Yorkel505

fay_mishima

@fay_mishima

Hi @Yorkel505 I just finished my second month Mavenclad intake. I promised an update :) I had good days and bad days. I made sure on the days I took the pill, I was home as I would get very fatigued. My 30 minutes power naps would go up to 2 hours. Occasional headaches would occur at times if I hadn't slept well. Nausea would hit me if I don't eat well, and heartburn/acidity depending on the type of food I had so I had to be very careful with my diet. Over-tingly sensation and numbness in my hands, but I'd get that with Avonex and Gilenya too. Next step is to wait for the 4th month for blood test to see how my Lymphocites are doing. I'll let you know if any other symptoms pop up. More side effects than previous meds, but still beats a daily pill or weekly jab in the bum.

fay_mishima

@fay_mishima

I forgot to add that I'd get slightly feverish after taking the pill

Yorkel505

@Yorkel505

Thank you @fay_mishima for the update. That's very helpful to me and other people. I asked the Ms nurses for the nausea and they said it's OK to take omeprazole in the morning. I have just finished my first round (week 1). No sideffects at the moment but I do expect the fatigue to kick in any day soon as the lympocytes get depleted. I have been also asked to shield for 3 months due to the COVID risk. Never ending lockdown for me.

fay_mishima

@fay_mishima

The nausea kicked in at week 3 after my 1st cycle >.< My mistake was that I did not have a good diet. If you get on a good diet and have lots of greens and avoid meats, you might not even feel nauseated. Take it easy, be safe and all the best.

fay_mishima

@fay_mishima

@Yorkel505 Something new in the last 2 days, I'm feeling that I have to catch my breath more than usual. I can't complete a sentence without taking a pause. A slight bit of MS hug symptoms, nothing major but a tad bit discomfort. I dropped an email to my doctors and see if it's anything to be concerned about.

Yorkel505

@Yorkel505

@fay_mishima, sorry to hear that. I presume you haven't changes anything in your daily routine to contribute to this? Hope all goes well and keep us posted. I am no doctor but this could be due to the low lympocytes which makes us feel tired

fay_mishima

@fay_mishima

@Yorkel505 It could be due to me taking a week break from my sinuses meds. I started it again today. So let's see... I think it's too soon for the lymphocytes, no?

US-Emma

@US-Emma

@Yorkel505, Did you start Mavenclad? I was diagnosed in 2003 and have taken Avonex, Tysabri, Gilenya (2 relapses in 11 mo), Lemtrada and Rituximab (concurrent, first dose of Lemtrada 4/2014, last dose 1/2020). I am on day 5 of my first week of Mavenclad. So far I’ve just had a bad taste and headaches, feverish feeling. I started to take Motrin and Paracetamol 3 hours prior to my Mavenclad and this helped the headaches, feverish feeling and chills. I’ve been on Omeprazole so this may be why I didn’t get more stomach issues. I also took Mavenclad at 9pm and went to bed so maybe I was asleep for the worst of the side effects. What have you experienced? Where are you in your Mavenclad journey? @fay_mishima, Have you had both cycles of Mavenclad for year 1? Did you experience different side effects on the 2 cycles? When did you finish cycle 2? How are you now? Thank you both for all your input! I really appreciate it. I went into Lemtrada so prepared with what to expect. It took a while to get approved for Mavenclad so I was focused on the approval process (which took 8 months) that didn’t do much homework prior to Mavenclad. As soon as I got the tablets I jumped right in. So I am a bit ‘over my 🎿’ and doing research amid starting the medication- I cannot recommend going into this blind! 😉 Your insights are much appreciated! Emma