@RedMike

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RedMike

Newbie to the group saying hello with questions 👋

Hi all, I'm new to this group and have only just joined today. So here's a little about my MS journey. My name is Mike. I'm 42 from the UK and was diagnosed with RRMS in 2012. I was not on any meds after diagnosis in 2012 till a big relapse with blurred eyes (Optic Neuritis) in 2014 which lasted for 8 weeks till it settled down. That same year I then went onto my first DMT Copaxone. I got on well with Copaxone and it weren't until September 2019 that I then switched over to Aubagio, due to site reactions from the injections. I've been fine on Aubagio until January of this year, when sensory symptoms of pins and needles in both front thighs, feet and torso kicked in and has still hung around since. Some slight weakness and balance issues too. I have since had another MRI in March this year which shows evidence of more lesions 😔 (bearing in mind that my last check up MRI was in 2016, so 5 years ago). To add to that, in the last 3 weeks I have had another bout of blurred eyes and am currently off sick from work. I work in IT so eyes are kinda key for what I do! The outcome of discussions from my last MRI results is that my Neuro has suggested I now come off Aubagio (after a bout of not very nice tasting drinks I'm told, to get it fast tracked out of my system, can't wait for that!) then move onto Level 2 treatment as Aubagio clearly isn't working for me. She has proposed 3 different meds - Ocrevus, Fingolimod or Mavenclad. Thats my story in a nutshell upto present day. Sorry for the lengthy message, and thanks for taking the time to read! A couple of questions if I may. Out of the 3 proposed meds, they look a little scary to me reading potential side effects. But the one I'm veering more towards is Mavenclad. Does anyone have any experience on this DMT? My Neuro has prescribed me Gabapentin too, which she advised will help with the pins and needles symptoms. Again, does anyone have any experience with Gabapentin? Thank you so much all, glad to be part of the community 🙂

SarahJH

@SarahJH

Hi Mike - I read your post and I am surprised you weren’t on any meds after diagnosis. If I May ask, was that your choice or the doctor did not offer anything like a DMT? I have been on a number of them since 2005. Copaxone for a longtime and those site reactions were terrible. Currently on Ocrevus. Have never been on either Mavenclad or Gabapentin sorry can’t speak to those.

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Vixen

@Vixen

Hi @RedMike and welcome to Shift! Of the three DMD you mention, Ocrevus - being the newest and shiniest - seems to show the most promise. It's only been approved here for two years. My understanding of Gabapentin is that it's great for some and works a treat, but not much effect with others. So you've nothing to lose by giving it a go! By the way, what's the 'red' bit....hair colour, politics or temper? :-) :-)

RedMike

@RedMike

Hi @SarahJH I weren't offered any DMT at the time I was diagnosed. It weren't till 2 years later after a big relapse with my eyes that they then suggested 1st line treatment options. Yeah I was on Copaxone for 5 years and got on ok with it. Not much in way of side effects or MS symptoms in that time. Just after that amount of time, the lumps that start to form under previous injection sites weren't nice, and painful if injecting into the same place! In regards to choosing my next Level 2 DMT, I have been toying between Ocrevus and Mavenclad. How long have you been on Ocrevus? Any pros and cons to mention? I know it's the infusion one.

SarahJH

@SarahJH

I have been on Ocrevus since it was approved here in the states, maybe 2017 or 2018. Was on Tysabri before that. Similar method of action so I was willing to switch over. Really liked Tysabri. I never felt a direct impact from any DMT before. Just told it will reduce possible exacerbations so I took them as directed. Prior to switching to Tysabri I had some strange vision issues and my food felt and tasted like rubber (you would think I could have lost some weight then...nah, just kept trying and hoping! LOL). My neurologist had me wait to take steroids to see if the Tysabri could clear up those issues and it did. I was pretty happy with that DMT but my JC virus levels spiked and I was taken off it. I have been pretty stable on Ocrevus until about 6 months before pandemic. Ocrevus is easy to take (compared with daily shots) only one infusion every 6mths (mine is given every 5mths). I do not have any reactions and really do not feel any different after. Just a long boring day sitting in a recliner. Wish I could tell you it was a miracle drug! I have an appointment next month with the neurologist's office. Due for my annual MRI and next infusion. Will be talking with them about the progression of mobility issues even without new lesions while on meds. (unless the MRI finds them I guess...).

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RedMike

@RedMike

Hi @Vixen thanks for the input. I have much to ponder before I make my next DMT choice! The 'red' part of my name is a silly thing really, when I quickly created my username. Football related, referencing the team I support, Manchester United for my sins! 😂

Annie_Lyons

@Annie_Lyons

Nowt wrong with supporting Man Utd, the only team in town as far as I'm concerned! I have only been on Tysabri, and I love it - don't want to give it up for anything. I've been on Gabapentin since 2014, and I'm fine with it. I was put on it because my tongue had a constant burning sensation which I just found became too much. It must settle down other pains to some extent. I blame any weight gain on the meds - seems only fair :)

Tracey1982

@Tracey1982

Welcome to the group

Vickyms

@Vickyms

Hi Mike. I tried gabapentin last year. It was great for my mood and I slept really well, but it also made me really fuzzy brained and MS does enough of that on its own so I came off it. I was taking it for pain of muscle spasms so am now exercising more which really helps. I'm on Tysabri which I love, it's changed my life ☺️

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Sheena0309

@Sheena0309

Hiya, just here for the comments 😂. In a similar position, but choosing between Tysabri and Ocrevus and been prescribed Pregabalin and they said they would switch me to Gabapentin if it doesn't work to help my tingling, random spasms and weird vibration sensations. My friend had taken both gabapentin and pregabalin before and she says they are great but make you feel proper drugged up and drowsy to start off with and that it took her body about 2 weeks to get used it. Wonder if it would work if I only took them at night? Everythings new to me with MS so im just learning as I go lol Good luck with deciding x

Louisbear

@Louisbear

I'm a strong vote for Ocrevus, though of the ones you've been offered I only have experience with fingolimod (didn't work for me). Infusion time's been dropped to just three hours in the chair now in Melbourne, zero reaction, steady disease status. Been on it for four years and zero lesion activity or progression

Katya

@Katya

Hey and welcome! I chose not to have meds after my diagnosis in 2012 too... Tried copaxobe a little later and I hated it. I'm now on mavenclad and it's worked wonders for me personally. Very little side effects and it's convenient to take. If you're on Facebook there's a great group for mavenclad patients..I joined before I made my decision and the guys and girls on there are great. Good luck with your journey

sritawk

@sritawk

Hi @RedMike, welcome to the site! Whilst I don’t have experience with the DMT you’re leaning towards, and I’ve only just started Ocrevus - I can only chip in with the deciding factors for me were convenience of infusions only being once every six months and efficacy. You mention blurry eye sight and working in IT, that’s always a fear in the back of my mind as I also work in Tech - if you don’t mind me asking, how have your employers been with your MS?

Chezy

@Chezy

I finished Mavenclad in 2019, so far, so good! Just waiting on my mri results from my spine, brain is clear as in no new activity. It seems to work for me, I didn't have any problems other than I felt sick when taking it. Good luck 😊!

fay_mishima

@fay_mishima

Hi @RedMike welcome to the group I'm currently on Mavenclad. If you click on my profile then you can see a post with my experience on it. I've taken Fingolimod before but I hated it. As for Gabapentin, I took thay too for a while then decided against it. Its more of an anxiety meds and I didn't want to get hooked on those. I always have pins and needles in my hands, thighs and feet. It's just about what kind of day you're having that makes it severe or not. All the best.