Last reply 10 months ago

Hi! I’m just curious to see if there are people like me out there… diagnosed in 2009, was on Copaxone for 2 years then had more children. I haven’t been on anything since. I actively work out and I am honestly scared to try anything new because of side effects and such. I have shown new lesions on my mri in the past year, only ever had to flare ups. I’m not sure what to do. Love being med free. Thanks

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11 months ago

Good meds with few side effects out now include cladribine, rituximab & ocrevus. You don’t want your MS to go unchecked – not pleasant.

11 months ago

@beachgirl . it’s a difficult balance between quality of life and management of your MS.

Regular MRI scans may provide some indication of advancement, or not, but MS is generally too unpredictable to provide any hard and fast rules.

11 months ago

Hi @beachgirl!! I am about to start Cladribine so I will let you know how that goes. I go to the gym pretty much every day and all my hobbies revolve around being active – I am hoping that this drug won’t negatively impact my lifestyle whilst also giving some very good protection from the onset of the disease. Worth looking into I think. You have to remember that the ‘do nothing’ option is not without risks so it’s important you weigh everything up. Good luck xx

11 months ago

Remember that the stronger the drug, the more closely it’s monitored. When I was on Copaxone, my only contact with the hospital was the annual neuro appointment when I also had bloods done. Now on Gilenya, it’s a six-monthly nurse clinic review, where they go over all aspects of how you are plus bloods, and as well as the annual neuro appointment, there’s an annual MRI. I wouldn’t be surprised if the third-line drugs have even more stringent monitoring requirements.

10 months ago

How is the gilenya for you?

10 months ago

One capsule a day. No issues, MS is stable. Next appointment in May (nurse + MRI) so we’ll see!

10 months ago

Hi there, I really feel like I relate to this.
I was diagnosed in 2005 and with some pain etc I was on so much medication for symptoms (not treatment). I also started on Copaxone. At one point I had an issue with an allergy I have (another autoimmune thing – I’m not allergic to anything but come up in hives and my eyes, lips, arms and legs swell up) and so they took me off the Copaxone just to make sure it wasn’t that. It wasn’t but as my MS was doing so well I stayed off it and was so well and healthy running marathons etc that I didn’t even consider going back on treatment.
Then in 2016 I relapsed and one of the things that my new neurologist (I had moved) asked was why did I stop treatment? She said that even though I was well I should have stayed on something to continue that run of being so well.
I am actually still coming back from that relapse but I’m nearly over it. I am 2 stone heavier and am running again for the first time in 2 years. I found the relapse so hard. I started back on Copaxone but am actually now on Tecfidera. It’s completely up to you but in hindsight I would have stayed on treatment.
That being said, my friend’s mother refuses to take anything and treats everything naturally and is doing well. she swears by her natural approach. Her MS is more advanced than mine but she is 30 years older than me…
I feel I’m still young and just don’t want to take any risks. I loved loved loved being so well for those years in between and I just want to be back there again.
A tough call. Would be interested to hear what you decide on! And congrats on being so well and healthy!!

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