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Hi! Im 19y.o and i have Been diagnosed with ms for 3 years. Please excuse my english, its not my mother tongue. I have pretty big attack when i was diagnosed but from that point on nothing. I dont feel bad or i did not experience any symtomps. My problem is, that i dont feel comfortable injecting rebif. The places where i inject are sore, red, and even painful. I just cant take it. They even lowered my mg to 30 but its still VERY bad. Now i should switch to 44 again and i cant imagine that… read more
If you decide to get off Rebif, please have a back up plan to get on another MS medication. I take Copaxone and am going to start Ampyra soon. But I have had MS for 23 years and in my case, it doesn't just go away if you stop the meds. It might seem to, but it can creep back up. So, please be prepared or it could get way worse. Worst case scenario, you might never walk unassisted or walk again. And if this happens, MS can still progress. Sadly it is a horrible disorder no matter how you sugar coat it.
I started on Rebif, had the same horrible reactions. They wouldn't even clear up in enough time to inject those sites again. It was terrible. I switched to Tecfidera for five years. It was controlling my lesions but not symptoms. I switched neurologist and he decided to put me on Tysabri. I was feeling great with it. But have had to take long periods off of it because of post-op surgical infections. I can't wait to get back on track. Because it really did seem to be working great for me! Good luck!
Please don't feel bad that Rebif doesn't work as your DMD. I know it sucks as a neuro advised you to take it. What no doctor will ever tell you when you are diagnosed with MS is that then you became a science experiment. This is not a bad thing it's just you may have a number of DMD options available to you and all of them helped someone with MS and probably more than 1 person. That does NOT mean it will slow MS without MAJOR side effects for you. I suggest looking at this failed experiment, Rebif for you, as a good thing. You have eliminated 1 DMD option for you. You should never take a DMD that has uncomfortable side effects for you. There are other options and you should feel good you, in effect, have narrowed the options. KUDOS!!!
Speak with your neurologist again. There are many other options out there that will help. Good luck!
@A MyMSTeam Member Yes even mine dont clear up and when i told that to my doctors they just say that its not "that Bad". Well for sure they dont inject rebif in them, cause yeah..IT hurts 😂 That was the main reason i didnt switch medications before, because they just told me it going to hurt and i just need to deal with it. I mean they're not mean just every neurologist told me that before. But now i just want to stay by my word and switch. Good luck to u too and have a Nice day! :)
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