I am posting this for a specific reason - I was diagnosed in March 2013 and, like most people, quickly turned to the internet to learn more about MS and treatments. Most of the information out there on MS treatment is frightening to the point of paralyzing. Reading message boards convinced me that any experience with a DMD was going to be a terrible one. So I thought I'd add my experience with Rebif after a few months of use...
I started Rebif in early June after being rejected for Tecfidera by my insurance company. I had originally picked Tec because it was new and didn't have as much negative chatter about it posted as the interferons. I was quite upset about the rejection and scared to start Rebif, but assumed I did not have much of a choice if I wanted to use DMDs.
After my doctor submitted the prescription for Rebif, it took MS Lifelines *one hour* to call me and confirm the order. I spoke to a very kind nurse who explained the process of getting and using the medicine to me. The nurse sent my order to the specialty pharmacy that my insurance uses and it took the pharmacy all of a few hours to call me to confirm delivery of Rebif. I had my medicine within 24 hours of the original order.
MS Lifelines set up a home visit with a nurse to teach me how to use Rebif, and she was just wonderful. I use the Rebidose injectors, and she made sure that I was competent with their use and watch me inject for the first time. The injection itself was painless. I felt so much better about the process after that first time.
I had braced myself for a summer of nasty side effects and flu-like symptoms, but I've experienced none of that. I premedicate with two OTC Advil and that's basically it. Titrating up yielded very minimal side effects, mostly just a night of insomnia or two as I adjusted. I've never experienced another side effect.
The injections have remained, for the most part, painless. My thigh injections sometimes sting for a portion of the injection (10 second injection, a sting for maybe 2 - 3 seconds). I've only had a few site reactions and they consist of a red mark around the injection site the next day. They do not itch or hurt or swell. And I only get those marks on occasion.
Rebif offers a lot of MS-related support, including the ability to talk to other MS patients about their experiences. I have yet to take advantage of those opportunities, but must comment that everyone I've ever spoken to from MS Lifelines has been knowledgeable and so kind. It's been a great experience overall. The medicine arrives at my door each month like clockwork, I have no copay (I think no one with private insurance does), and I know that if I had any problems, they would be fixed quickly and professionally.
I saw my neuro for the first time since starting the medicine last week, and he's as pleased as can be with my current state and experience with the medicine. He told me that I was doing "just wonderfully" on the drug. My bloodwork looks great and my clonus response (which got me sent to a neuro in the first place) is gone. I was diagnosed with very minimal MS symptoms, and really don't have any now (occasional pseudo exacerbation issues when exercising heavily outside - just a little tingling that goes away). I am a female in my early 30s in good health overall.
I plan on taking Rebif for as long as I can. For some reason, the drug and I seem super compatible. I can't confirm that Rebif is halting my progression until my winter MRI (I'll check in again), but taking it has been a breeze.
I'm not affiliated with the drug company at all, like I said, I just want to affirm that it's possible to have an excellent experience with a DMD, even an interferon. I hope that every MS patient who takes DMDs finds a drug that is as compatible with them as Rebif is with me. Overall, please don't let all of the negative information scare you from trying DMD treatment.
I started Rebif in early June after being rejected for Tecfidera by my insurance company. I had originally picked Tec because it was new and didn't have as much negative chatter about it posted as the interferons. I was quite upset about the rejection and scared to start Rebif, but assumed I did not have much of a choice if I wanted to use DMDs.
After my doctor submitted the prescription for Rebif, it took MS Lifelines *one hour* to call me and confirm the order. I spoke to a very kind nurse who explained the process of getting and using the medicine to me. The nurse sent my order to the specialty pharmacy that my insurance uses and it took the pharmacy all of a few hours to call me to confirm delivery of Rebif. I had my medicine within 24 hours of the original order.
MS Lifelines set up a home visit with a nurse to teach me how to use Rebif, and she was just wonderful. I use the Rebidose injectors, and she made sure that I was competent with their use and watch me inject for the first time. The injection itself was painless. I felt so much better about the process after that first time.
I had braced myself for a summer of nasty side effects and flu-like symptoms, but I've experienced none of that. I premedicate with two OTC Advil and that's basically it. Titrating up yielded very minimal side effects, mostly just a night of insomnia or two as I adjusted. I've never experienced another side effect.
The injections have remained, for the most part, painless. My thigh injections sometimes sting for a portion of the injection (10 second injection, a sting for maybe 2 - 3 seconds). I've only had a few site reactions and they consist of a red mark around the injection site the next day. They do not itch or hurt or swell. And I only get those marks on occasion.
Rebif offers a lot of MS-related support, including the ability to talk to other MS patients about their experiences. I have yet to take advantage of those opportunities, but must comment that everyone I've ever spoken to from MS Lifelines has been knowledgeable and so kind. It's been a great experience overall. The medicine arrives at my door each month like clockwork, I have no copay (I think no one with private insurance does), and I know that if I had any problems, they would be fixed quickly and professionally.
I saw my neuro for the first time since starting the medicine last week, and he's as pleased as can be with my current state and experience with the medicine. He told me that I was doing "just wonderfully" on the drug. My bloodwork looks great and my clonus response (which got me sent to a neuro in the first place) is gone. I was diagnosed with very minimal MS symptoms, and really don't have any now (occasional pseudo exacerbation issues when exercising heavily outside - just a little tingling that goes away). I am a female in my early 30s in good health overall.
I plan on taking Rebif for as long as I can. For some reason, the drug and I seem super compatible. I can't confirm that Rebif is halting my progression until my winter MRI (I'll check in again), but taking it has been a breeze.
I'm not affiliated with the drug company at all, like I said, I just want to affirm that it's possible to have an excellent experience with a DMD, even an interferon. I hope that every MS patient who takes DMDs finds a drug that is as compatible with them as Rebif is with me. Overall, please don't let all of the negative information scare you from trying DMD treatment.
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