When I was first diagnosed, I struggled to find first hand introductory experiences with DMD’s. Just a month into my ms journey, I started on Plegridy.
For a year, I was so sick. I mean, really sick. I couldn’t eat, I had the chills and shakes almost 2/7, and my skin was the perfect grey-green of the crypt keeper.
I’m also going to quickly say this, too. Until getting on Rebif, I had NO idea how much the Plegridy program was lacking. From general support, to getting more advanced questions asked, the whole process was a joke. My nurse educator was kind and informative the one time I saw her, but that was it.
In June, I got my MRI results. To make a long story short, there were a couple new, but subtle, lesions. Because of this, my Physician Assistant and I decided to make the switch to Rebif.
Plegridy and Rebif are the same type of immuno-modulating interferon therapy, with a couple distinct differences. Where Plegridy is only injected once every two weeks, Rebif is injected three times a week. This is due to how the interferons are disbursed into the system.
Plegridy is a peg-interferon, and 125 mcg at that, so it’s only needed twice a month. Rebif is only 44 mcg, and moves through the body at a normal pace, so you inject it three times a week. This translates to over 500 mcg a month, which is double the dose of Plegridy.
Before I began Rebif, I was excited to hear how much better tolerated it is. I don’t know if it’s the massive dose at once, the peg-interferon hanging around in the body, or a combination of both. Most everyone I spoke to, from patients to pharmacists, told me I’d notice a difference almost immediately.
And, I have so far. Let me start off by saying, everyone at Rebif and MS Lifelines are a m a z i n g at what they do.
My specialty pharmacy, Briova Rx, is an absolute joke. I’ve had to do their job more oftem than they have. From customer support to the pharmacists, the entire organization has been awful to deal with. From the get go, MS Lifelines handled the brunt of my issues with them.
My Rebif nurse contacted me within a day of my prescription officially went through, and has been an angel ever since. She’s been an MS certified nurse for almost 20 years, and has worked with interferons everyone of them. When she came to my home, she had treats for my babies. That should be enough said, but she really went above and beyond to help me and my Mom, and I can’t thank her enough for that.
Having to inject three times vs twice a month was a little A LOT daunting at first, but my nurse made it SO much simpler than my Plegridy nurse had. She helped teach me awesome ideas on how to make my injections easier and more convenient, not to mention less painful.
I’m finishing up my first week tonight. So far, I havent had any reactions…at all. No nausea, no chills, no fever, etc. My appetite has started to return, so I’ve seen a big increase in the time I can spend at the gym and the weights I can lift.
So far, so good. I’ve got one more week on 8.8 mcg before I titrate up again. I’ll be on 22.2 mcg for another two weeks, then it’ll be the full monty from there on out.
I’ll update you guys again in a couple weeks to let you know how I’m feeling on the bigger dose. If you have any questions/experiences about interferons, DMD’s, or just in general, drop them below!
Talk to you soon,
Hi Bri
I live in Cape Town, South Africa.
I was diagnosed with Multiple Sclerosis on 26 July 2019, and I will be starting on Rebif next week.
I am so grateful that I found your post, I was trying to find first-hand experiences of Rebif patients. Thank you for putting me at ease, since this is the first prescription I got, I was wondering how it compared to other drugs.
I look forward to seeing more updates from you 🙂
Hi, Elizabeth! I’m grateful you found my post – I couldn’t find many personal experiences when I was first diagnosed, either, and that’s why I’m here. I think you are in great hands with Rebif!! Much easier than my last DMD. As long as I stay hydrated and stick to my routines, Rebif has treated me very well so far. I hope this is the same for you, and I hope you find more information here that can help!
Hi Bri
I had my first 22mg shot yesterday (14 August), happy to report ZERO side effects 24hrs later. Fingers crossed that I may stay that lucky 🙂
Thanks for the tip on staying hydrated, to combat nausea.
Tomorrow evening I’m making my first ‘public appearance’ after my diagnosis, at my son’s school concert. I told him I’ll be waving my crutch in the air, so he can spot me in the crowd, LOL.
Big hugs, Elizabeth
I hope you and your son had a great time, Elizabeth!! 🙂 No side effects is awesome, I hope it stays that way for you as well!
I’m going strong on the 44mcg, having a couple side effects but nothing very bothersome yet. I’ll definitely update after I’ve been on the full dose a few months.
Thanks for updating! Titrating up can be nerve wracking on any medication, but Rebif is making it easy so far!
xo Bri
I, too, am glad I found your blog/story. I start Rebif for the first time this evening with Nurse Lisa coming to my home to educate both my husband and myself. I was diagnosed about four weeks ago. And I cannot say enough about MS Lifelines. I would love to go meet all these people I have met and spoke with over the phone in just a short period of time. They have definitely been awesome. I receive texts, phones, and emails from them. All of them are super kind. Please pray for me as I begin this journey. Hoping no bad side effects. Again Thanks for all the posts, Jill
Hi Jill, I’m so glad you’re here! MS Lifelines and my nurse Dianne have been WONDERFUL and I’m glad you’re found them just as helpful! I’ll have you in my thoughts as you begin Rebif, and hope you have no side effects other than MS stability! 🙂