This is my first go, My name is Claire, i’m 28, and the mother of 2 princesses, i have rr ms, just had a short sharp dose of steroids (never again) trying to shift this relapse before my wedding. 2 days after stopping, i had a faint/anxiety panic attack, with HUGE pupils. Anyone had similar on a come down from steroids? Also been given AMAZING treatment options, i’m just nervous about the side effects, it’s a 5 yr treatment, and 70% of people have had little or no relapses after having it. It sounds wonderful, has anybody been on this treatment? xxx
Are you referring to Lemtrada? Its a two year treatment but you are monitored for 5 years. I’m due to start this soon.
Hi Claire. I finished a short course of steroids 2 weeks ago. I felt awful during the. 5 days and for a good few days after . Like you it was my first time taking them. Not sure i would again. I too am now having to choose a DMD. Sorry I can’t offer any more help. Hope you feel better soon
Are you? goodluck i think it’s what i’m going to choose. Have my ms nurse meeting soon to discuss things. Just thought i’d see what others’ thoughts are. Hope it goes well for you xx
Oh no, sorry it was horrid for you too. Nice to know i’m not alone in the ‘crappy’ feeling/side-effects though. Most have said about feeling superwoman/man… DEF not my findings If you’re not to busy, or from time to time, i’m going to pop on here, and follow up the treatment i choose, be awesome if you could do the same? Goodluck with your choice anyway xx
Hi there, i’ve had my meeting with my nurse, and i’m starting Lemtrada just after my wedding about 8 to 10 weeks. I’m still nervous, but also really really positive!!! This last attack on my spine is something i hope to never experience again, at least not that aggressive. How’s everyone else doing? How is your treatment working for you? xxx
i can understand why you feel nervous and positive at the same time. I haven’t reached the decision stage yet. Just enjoy every moment if your wedding!
lemtrada is an amazing drug. i have only heard good things about it.
enjoy your wedding and then enjoy putting ms in its place!
Thankyou!! the main issues, are the blood clotting problem, that’s 1 in 100 and the kidney problems are 1 in 1000. There’s some less serious side effects, that could potentionally be VERY annoying, but in comparison to the heart breaking effect of my last attack (on my spine ) i’m game to try it, i want fun and play with my girls. Although the steroids gave me horrid side effects, they have sped up the recovery, and i’ve been rolling around on the floor with my 10 months old, having giggles <3 Me and my 7 yr old have been planting veggies on our allotment so much fun, also been told i may be entitled to a grant for a downstairs wet room Please keep me up to date on your treatment choices… i don’t like to lose, so kicking ms’ ass is so important, and being positive is helping loads xx
I have just been offered Lemtrada. Only just been talked into having it from family and friends, was so worried with the side effects, but need to think of the future with my children and new career. Good luck when you have your treatment.
Thankyou Mel, and goodluck to you, if it works it’s best to have it as soon as pos to try and prevent disability later on in life i’m very much a fan of this lol. My nurse said she has 5 patients on it and 3 have the thyroid side effect, but so far none of the other more serious side effects, and also they had double the dose. They use to wait to offer it, and she said now they realise it’s better to do it sooner so the damage isn’t so bad, and a couple of them have had their scars shrink!!! My neurologist, said so far i’ve healed 100% after an attack, so if we can prevent future attacks, my chances of disabilities is slim I’m still nervous as hell, but the future with my girls and hopefully having another one day means i’m gonna attack this b***h right back. Please pop back when you can and let us know how you’re getting on xxx
Hi humbug, have you started treatment yet? I hope you’re well x