A few have replied. Please share your experience with REBIF!

[Diamond57]

Hi,

Still waiting for all the paper work to be DONE!!!! My patience and anxiety is getting the best of me. Anyone... and everyone please share your experience with REBIF as I'm getting nervous and have knots in my stomach alot. They told me 4 weeks ago I'd be already staring the process. I have read some of the comments in the meds section. I would like to hear from more.

Thanks all!
Susie ;D

[Cat Mom]

I don't normally reply unless something positive to share but since you asked... it just didn't work for me. I was on it from 2005-2007, had back-to-back-to-back relapses, attacks left permanent damage (left optic nerve is dead).

Also, made me feel like garbage every day, just different levels of garbage depending on when I did the shot. Upon switching to Copaxone, I realized the Rebif side effects actually made me feel worse than my MS did.

I'm sorry for not having anything good to say, it's my understanding that my experience was not the norm and it's worked well for so many.

When I asked my neuro why he didn't start me on the med with virtually no side effects (Copaxone), he said most people shy away from a daily shot, prefer 3 x per week. Made sense to me at the time.

I really hope you have a good experience, please keep us posted.

Jen

[Diamond57]

Thanks

Cat Mom thank you for your reply and being honest about it. I'm sure you understand my apprehension and maybe I'll be one of the lucky ones. But this waiting is driving me NUTS!!!!! I'm glad you had better luck on Copaxane. I'll let you know how it goes. I'll just keep this thread going.

It's beautiful in Michigan today. When it cools off I'll be going out for my daily walk and then the recumbent bike. I'm just trying to start an early regimine of excersise slowly. I love to walk.............good for the soul.

My best......
Susie

[KatieAgain]

Diamond

I have been on both Avonex and Rebif which are the same thing. What exactly is it that you are apprehensive about, and I will try to answer your questions.

[Diamond57]

Apprehensive

I'm apprehensive if I'm doing the right thing by taking this medication. I hear some of these horror stories and being diagnosed only two weeks ago really scares me. I've been sick for so long that there's this part of me that doesn't want to me more sick. When I read some of the posts I just sob my eyes out. I don't know. When I was 13 my parents took me to Mayo Clinic and was diagnosed with severe chronic depression.........and let me tell you I've had some severe episodes. I'm one who has always held things inside and with many years of counseling the one thing it has taught me was to express my feelings and let people know what you are feeling. I have told a few people I'm close to and they told me they will be there for me. I've lived such a secluded life the last 8 months and didn't want people to know I was sick. Sorry....I'm just rambling. In closing I'll do my best to stay healthy. I excersise, eat well and treat people with kindness. I think I'm scared on the inside and trying my best to take it one day at a time.
Thank you so much for listening. Wish we were talking in person.
Have a great tomorrow and a blessed night. I'm getting tired. Nitey...nite
Susie

[KatieAgain]

Darlin' I can tell your scared. MS is a very scary diagnosis. It does get better with time, but you will still regress here and there.

I think that by going on a DMD you are doing the best thing you can to help fight this Disease. A DMD, coupled with a healthy lifestyle just might slow things down a bit. Might slow down things a lot!

When most of us are initially diagnosed we are in a flare...that's how we ended up in the Neuros Office. Then you are told you have MS...and the first instinct is to go online and get educated.

The stories you see here are more bad than good. What you rarely see is people coming here and saying everything is great. For the people that are doing great, they are out enjoying their life. But they come back here for support as needed.

For you, the interferons can be quite effective. The only reason I quit the interferons was because I developed allergies.

Initially...you might get a little sick, flu-like symptoms with interferon. A Rebif Nurse will come to your house and will give you lots of info on how to best damper those flu like effects. Over time they will normally lessen to where they are mostly non-existent.

When I use to do my shots, I had a ritual. I did them at the same time of day, I would do everything at my kitchen table and have a cup of tea to sip on. I used the auto injector for all my shots. I know how to do manual shots, but auto injector worked for me. You will barely feel the needle and I mean barely, but sometimes the medication stings. Not always...but sometimes. It will go away in a few minutes.

Interferon can cause depression. I get bouts of depression like you, but for me, I never had any problem with interferon causing depression.

This is just the beginning of your DMD journey. Like most of us, Rebif will not be the only DMD you take, but it will be your first. I'm on my fourth.

The key to success on any DMD is to give it time for the body to react, at least six months, and to be faithful...don't skip doses. Your Neuro will monitor your progress over the next few months and decide if Rebif is right for you. If not...there are other drugs.

The great thing is that there are drugs now that can help. It use to not be that way. I hope Rebif is a winner for you and you are feeling right as rain soon.

[Diamond57]

Thank you

Thank you Katie for your knowledge and hope. An yes, You read me well. I will let you know when I start and how the process goes.

Mey best.....
Susie Q

[brianb]

I've been on Rebif since 2006 with little to no progression with yearly MRI until 2010 (even some improvement in 2008) and still have little to no progression physically obvious although the damage to my sense of touch in the lower half is about 25% diminished, it comes and goes and isn't really a problem.

I take Aleve at the same time as the manual shot just before bed to avoid flu symptoms although sometimes I wake up with cold sweats, no trouble besides red injection site reactions and a raw lack of fatty places to inject. The fatigue goes away with time, I don't notice it at all these days and I can still run 3 miles the next morning.

I had cancer a few months ago, related? maybe.. not sure..

All in all, it seems to have stopped the disease in its tracks and I don't consider any of the downside to be important. Unfortunately I have to pay $150/month for it instead of $35 since my insurance plan changed for 2014 but its still money well spent.

[Diamond57]

brianb

Thank you so much for responding. I'm starting the week of July 28th. I am a bit nervous and my biggest fear is I have severe depression. Did you experience any? And was the fatigue so bad you could'nt go out or anything? I'm a thin woman 100 lbs. Most of my fat is in the tummy area and of course the thighs. Did you use the auto rejector? I'm glad you've had luck. I was diagnosed in June. If you you could give me any more tips I would greatly appreciate it. I've been sick for so long I have forgotten what it's like to feel well. Not everyday is bad but life has changed so much in the past year and I'm really and truly trying to be positive but the closer it gets I find my nerves are taking over. Thanks so much buddy....Hope to hear back again.
My best....
SusieQ

[brianb]

Although I'm a bit late on that reply, I would start as soon as possible but I fully understand insurance or if you want to wait for a nurse to do the in home demo if they're still doing that.

I might be able to relate to depression a bit because I'm getting older and have lost some of my prior physical ability along with surgeries which leaves me a bit down thinking about adjusting my expectations from my body but I don't think I can really relate to depression.

I don't think I experience fatigue either, nothing that I can't work through. I really can't think of any downsides to Rebif in my personal experience, I feel quite lucky.

You have me on thin by a bit although we are probably comparable body fat wise. I struggle to find anywhere acceptable and mostly use the area right above my hip bone toward the back as the skin seems to be fairly thick around that area. I tried the auto injector but 100% of the time it will be a muscle or bone injection instead of subq so I grab a loose pinch worth of skin, go in at an angle until I can feel the needle pass the dermis (it feels kind of tight and then less pressure) which is something between 50-75% of the needles length and then push the plunger over 5-10 seconds depending on how it feels.

Supposedly the backs of your triceps, belly (this one is super painful for me) and thighs work but one doctor told me anywhere that can collect fat is a good enough location since you will have to move around a bit over the years. You might want to research the hip area a little bit, there are some tissue that isn't as resilient to puncture that attaches to the bone.

[Alicious]

The best thing about any of these meds is that if it's not the right one you can switch to something else. You can commit to treating your disease, but you don't have to commit to Rebif. I did both Avonex and Rebif, and while they weren't right for me, Rebif may be perfect for you.

Hopefully it goes well for you Most people do great on it. Just pay extra attention to your depression and mental state, since you know that you have suffered there in the past, and speak up if you don't feel right. Chances are, you'll take the med, treat the flu-like side effects, acclimate to it, and go on about your business.

I did manual shots; I like them better than the autoinjectors, but it's personal preference. The nurse who comes to you to show you how to inject will help you find the right spots on your body to inject, and they definitely see other slender ladies.

It will be OK.

[Diamond57]

Thanks for replies

brianb and alicious thanks so much. Once I begin I will keep this thread rocking to let you know how it's going. The specialty pharmacy called and everything is set for the week of July 28th. Thanks all. You know us newbies.....a million questions. I feel so safe and grateful to each and everyone of you.

Much
Susie Q

[Alicious]

Please do keep us posted! I promise, it gets easier and you feel like you know what you are doing a little bit better over time. Once your new normal starts feeling, well, normal, you'll do your shot and you'll find life after MS.

Ask lots and lots of questions! It's better to ask than to wonder and worry. I've been diagnosed for nearly 4 years, and needed reassurance because lucky me, I did a lumbar puncture last week. People here really helped out with their experiences. It's why we're here.

[waysiek]

Great Experience on Rebif

I was on Rebif for 12 years and it also stopped my MS in its tracks where the other interferon therapies were just not strong enough to do that. Just 3 months ago I had to stop injections because after 18 years of interferon injections, I developed scar tissue and inflammation. I wish I could have stayed on it because it worked so well. That's not to say that there weren't some flu like side effects all those years, but I managed it by taking 2 extra strength Tylenol just before the injection and another two 4 hours later. Also, I took the injection before 5 pm so that any side effects were over with before I went to bed. Be sure to titrate up the dose and give your body a few months to adjust to the dosage. The drug has a long track record, unlike many of the newer meds. Best of luck!

[Diamond57]

Relief

Waysiek......your comment really helped because as the date gets closer to start the more nervous I'm getting. I just want to begin. Did you use the autoinjector? If so was it difficult? It's kind of funny you're the first one I've read that does it at 5pm. Most people say they do it right before bed to sleep through the symptoms. In my head I was thinking if you have flu like symptoms how could you sleep through them. I have had a sleep disorder for 20 years and yes, sometimes the meds work and sometimes they don't. Hmmmmmm.........I will have to think this through. Did you lose any hair? Did you vomit? I know alot of questions but every bit helps. I have a hyper thyroid under control with meds but lost alot of hair. Looking forward to your response....
Have a great day!
Susie Q