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Old 01-20-2010, 07:12 AM   #1
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Newbie info on Rebif

I am looking for information on Rebif from people who are presently on it. I was just recently diagnosed with MS and my neuro wants to start me on Rebif immediately. What are the side effects? How painful are the injections? Are there tricks to make the injections go smoother/less stressful? Any advise would be great!!! Thanks

 
Old 01-20-2010, 02:06 PM   #2
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Re: Newbie info on Rebif

Hi Tiffany! Welcome to the board and to Rebif..Ive been on it for 4+ years and have LOTS of info for you.

To answer your questions: The side effects for the first few months stink. No easy way to say it. Almost all of us have side effects..but not everyone. The side effects are nauseau and flu like symtoms. They start about 2 hours after the shot and last about 6 hours....if you do your shot at dinner time, by the time you wake up the next day, you are 100% okay! I managed to do my bachelors, get married and inherit stepkids all while learning how to do this. If I can do it, youll do it too. There are a ton of things which help to minimize the side effects and yes, I have a ton of tricks for you....but step by step, ok?

The injections are not painful at all. Rebif has the smallest needle of all the injectables. It also comes with an autoinjector. SO, the places that are hard to reach, you can literally just press a button and it does all the work for you. Youll find that there are 4 places on each side of your body to inject...and rotating them is important. The drug burns just alittle when it goes in, but only for ten seconds...you massage the area after you inject to dissapate the medicine, and the burn stops instantly. The areas you inject are: Stomache, Thighs, Arms (underneathe in the fatty part) and Rear...S-T-A-R. They call it the STAR macarena- and you do the left side one week, the right side the next...its easily managed.

Yes, there are tricks to making the injections go smoother and less painful. One is to talk to the nurse who is going to teach you how to do this about Aleve, instead of Tylenol or Motrin as a pre-injection pill. You take it 1/2 hour before the inejction and it really helps the side effects. All of us like Aleve better, because you only take one pill and it lasts 12 hours...for some of us, after a few hours, when its bed time, we take a Tylenol PM to help us relax and sleep...But you should be talking to the Rebif (MS LIFELINES) nurse who will call on you and teach you to inject before I give you anymore helpful hints! You will also be taught to either ice or heat the area before the shot. I like ice, personally- but some people like to put a warm compress on the area. I find that when I do that, I get red marks...ice, seems to help me more. and, again, I have more post-injection hints for you. Ill give you one. Arnica is a gel sold in any health food store...it comes in a tube, like toothpaste. Arnica is an all natural gel which completely dissappears with no odor once its massaged into the skin. By using this after the shot, it helps keep redness and bruising down to a minimum (thats what the American Indians used it for) and helps you to massage the area and make the medicine dissapate quickly! No more hints. Not until you talk to your nurse!
I could go on forever...

Tiffany, you can search out my other posts and read more- or you can do a search on healthboards for Rebif and read what others say....the drug takes 6 full months to get into your system, and the shots are titrated. What that means is that youll get 3 levels of syringes. The first will only be 14 mcgs. You wont have any side effects at all the first 2 weeks. The next 2 weeks will be 22 mcgs and you might start having side effects (I didnt) then you go to full dose which is 44 mcgs..at that point, anything is possible. For me, it lasted 4 months of 44 mcgs and then one day, nothing. I was fine. I stopped taking Aleve most of the time- and never have any problems. Ive done my shots in cars (moving, not driving) in airplanes and in bathrooms of restaurants. It takes 30 seconds now for me to do it. They come pre-filled, ready to go. And, you dont have to refrigerate them up to 30 days, so traveling with them is easy. You put them in your carryon, or pocketbook! I travel all the time and never have a problem.
'
So thats lesson 1.... Please feel free to post specfiic questions if you have any...and welcome to our world. I will tell you that in the 4+ years of being on Rebif, Ive never felt better. My energy level came back...no new lesions (I had 50 when I was dx) and overall, Im doing amazingly well. So, I wish the very same for you!!!
Hugs,
Nikki
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Old 01-20-2010, 02:17 PM   #3
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Re: Newbie info on Rebif

Hi Tiffany-

Sorry to hear that you have joined the club, but welcome!

I am on Rebif and have been on it for about 2 months, so I am at 44mcgs. My side effects are currently are bursts of energy (I switched for evening shoots to morning ones), occasionally a chill that I can't shake but that is very rare. I do get the red bullseye spots so I need to start working with that. By the time it is time to shoot in that area, the spots are usually gone. I know that I am one of the lucky ones. I didn't have any side effect today and I was off of it for over a week due to the switch in insurance plans.

The shots are not really that painful. Make sure the alcohol is totally dry. My Lifelines nurse had said having the auto injector set at 3 but I changed it to 2 and I like that much better. I also take Alieve (when I remember) 30 minutes before. On the days I feel crappy, I'll take more a few hours later. Since I take them in the mornings, I am usually able to jump in a warm shower instead of using a warm towel at the injection site. So far, warm/hot showers are the only elevated temperatures I can still tolerate without paying the price later!

Don't stress out over the shots or about the side effects. Lord knows we don't need any more stress!

Mary

 
Old 02-10-2010, 06:51 AM   #4
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Re: Newbie info on Rebif

Omg thank you soooo much!! Your advise was so fantastic,,,so happy people like you take the time to help others!!!

 
Old 02-10-2010, 06:53 AM   #5
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Re: Newbie info on Rebif

I will take the advise! Thank you very much!!

 
Old 02-11-2010, 05:02 PM   #6
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Re: Newbie info on Rebif

I am jumping in on your thread as I was just diagnosed with MS on Monday. I'm still in a state of disbelief and need to decide which treatment option works best for me.

I was leaning towards Rebif, mostly because I am terrified of needles and having to do injections less a week is more appealing to me.

Basically I just wanted to thank you for posting the helpful advice (even if not directed to me) and so that I can monitor for other responses.

 
Old 02-12-2010, 04:54 AM   #7
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Re: Newbie info on Rebif

hi Wilc513. Sorry to hear about your dx. I remember those days...going from terrified to angry - its a tough time. But, honestly, its a manageable disease. Youre welcome for the advice. Im a huge Rebif fan, as everyone knows. I truly think it has kept me stable and learning how to do the shots, wasnt all that terrible. Rebif has the smallest needle of any of the shots- and because its subcutaneous, its easier then injecting into the muscle...and its quick. Now, I can do it without blinking, in a car, in an airplane, in a restroom - its so fast, that I just do it without thinking about it.

But, I wont lie to you. The first 4 months were really hard. And, I have tons of tricks to help you get thru them. And, Ill share them with you when the time is right. First you have to decide what is right for you...


Welcome to the boards, and again, sorry that you wound up here!
Nikki
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Last edited by MSNik; 02-12-2010 at 04:57 AM.

 
Old 02-13-2010, 06:52 AM   #8
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Re: Newbie info on Rebif

Hi again (and thank you again) Nikki.

Rebif sounds like it might be the best option for me. I want to be independent with my injections, I don't want to rely on my husband to be helping me with injections behind my arms and all that. I get queezy just thinking of injecting myself, which I realize will diminish over time but for now, its got me a little freaked out.

Were you working when you had the hard first 4 months? Unfortunately I don't qualify for FMLA because I fall into the top 10% of salaries of my company. So if I put in for leave, they can give me 90 days notice that I am being terminated. Its a cruel reality to be the person who runs the company and have basically no protection. Now, that isn't to say they would terminate me, but I am apprehensive to even put in the paperwork if I should need it. I'm hoping the road ahead isn't too difficult, that I can manage the initial phase of adjustment and move forward with my life like nothing ever happened. As I said in another post, I have contemplated stepping down so that I am in a lower profile position, but I don't really want to do that. Most of the time.

 
Old 02-13-2010, 07:46 AM   #9
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Re: Newbie info on Rebif

Wilc- do yourself a favor and dont project. Yes, I was working as a Regional Manager of a large company when I got the news....also, doing my BS fulltime. IT was hard, however doing Rebif at 5 pm or 6 pm, I had a few lousy hours (and nights) and by morning was 100% again. The side effects start 2 hours after injection and only last for about 6 hours....and this whole thing lasts about 4-5 months, but doesnt start immediately. With Rebif, you titrate. Meaning you start at the lowest dose for 1 month (no side effects at all) and then move to the second dose- and then full dose. THe needles come prefilled, no mixing - nothing to do. Injecting by yourself is VERY important! I remember having my husband do the first 6 injections, then one night we had a fight. He refused to do my shot! I was SO MAD AT HIM that I went upstairs and banged the needle into my own thigh to prove a point. Turned out, he did it to prove a point too.....that I could do it! Since then, Ive never asked him for help again.

Dont worry about what you might have to do workwise in the future. In fact, I wouldnt be telling too many people that you have MS. When I disclosed at work, all my problems started. If I had a gyn appt and took a few hours off, they assumed I was dying. If I had a headache, they watched me carefully because "something was right" and it must be MS. I hated that I told anyone...Ive had nothing but NEGATIVE results from disclosing at work. Now, at my current job, only my two closest friends know, and thats because they are nurses, and I trust them. They were also friends before I got this position.
Chances are VERY GOOD that youll continue working right up until retirement and youl never need to use FMLA or Disablility- but thats up to you. Get on a drug sooner, rather then later- take care of yourself. Eat right, stay involved in whatever you are currently involved in and dont let this change you. I promise you a year from now, youll know my advice was sound. It takes that long to truly recognize that MS doesnt change you. Remember too, by going on Meds (shots) you are controlling your MS and not allowing it to control you.

Youre going to be ok.
Hugs
Nikki
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Old 02-14-2010, 06:18 AM   #10
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Re: Newbie info on Rebif

Quote:
Originally Posted by MSNik View Post
Dont worry about what you might have to do workwise in the future. In fact, I wouldnt be telling too many people that you have MS. When I disclosed at work, all my problems started. If I had a gyn appt and took a few hours off, they assumed I was dying. If I had a headache, they watched me carefully because "something was right" and it must be MS. I hated that I told anyone...Ive had nothing but NEGATIVE results from disclosing at work. Now, at my current job, only my two closest friends know, and thats because they are nurses, and I trust them. They were also friends before I got this position.
Chances are VERY GOOD that youll continue working right up until retirement and youl never need to use FMLA or Disablility- but thats up to you. Get on a drug sooner, rather then later- take care of yourself. Eat right, stay involved in whatever you are currently involved in and dont let this change you. I promise you a year from now, youll know my advice was sound. It takes that long to truly recognize that MS doesnt change you. Remember too, by going on Meds (shots) you are controlling your MS and not allowing it to control you.

Youre going to be ok.
Hugs
Nikki
You are right about not telling people. I'm already tired of the pity party and its not even been a week since I was diagnosed. I told a few close people at work and in hindsight, probably shouldn't have. As far as family and friends, I am not looking forward to every conversation starting with "how are you feeeeeelling" with a look of pity and sympathy. I say that I feel no different today then I have for the past year, it just has a name now. I know people are trying to be nice, but I'm not dying and I won't need to be on the Jerry Lewis Telethon (which someone DID ask me). Live and learn right?

 
Old 02-14-2010, 06:46 AM   #11
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Re: Newbie info on Rebif

Its funny how many people confuse MS with MD....I used to get that too. Now I just answer them with "well, if I get Muscular Dystrophy, Ill contact Jerry Lewis's organization". Usually, they feel so stupid they are speechless.

Youll also start hearing "i know someone, who knows someone, whos mother has MS, and SHES FINE". And then youll start hearing about all the amazing diets, pills, and cures that people will find for you on the net, or know someone who took....the big one I always got was if you drink 2 shots of this juice each day, it will cure you....(side note, that juice was featured in a magazine this month and was said to have zero benefits for MSers and can actually stimuate the immune system into a epsisode... Youll hear how everyone in the world has a cure for this....but interestingly enough- there is no cure. Youll also hear about the grandmother who "died" from MS......not many people have ever died from MS. You dont die FROM it unless you are one of 1 million people who have a very rare form which hasnt been documented in over 50 years. The big thing you SHOULD know is that if someone was diagnosed with MS more then 10 years ago- there werent any drugs avaialble yet to keep them from progressing. SO, sad as it is to say if you are going to get dx with MS- you want it to be NOW and not ten years ago.....now, we have a fighting chance to keep ourselves from progressing and live normally. MOst of the people you will meet who are "drug free' have either been dx for more then 10 years and never had a choice or are already into a progressive state of MS where drugs are not going to help.....there are very few of us who have Relapsing/Remitting MS who are willing to stay drug free; however there are a few. And, most of them eventually wind up on a disease modifying drug. (rebif, avonex, betaseron or Copaxone).

See what Im saying?? Yes, its a good idea to tell as few people as possible, at least for the first year...get yourself into a comfort zone where you can not only speak intelligently about this, but also be able to say "yeah, Ive had it for over a year now" and people will realize that even though you have MS, you have had it "the whole time" and they didnt realize it.....they'll be less judgemental that way.

Hugs
Nikki
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Old 02-14-2010, 02:23 PM   #12
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Re: Newbie info on Rebif

LOL! Have you been following me around listening to all the conversations I have had with people???? That is ALL I hear. My cousin's brother's friend's neighbors uncle had MS and she's normal - can you believe it???

I can't believe that after a week I already have a canned response but it's been like you suggested "I have had this for at least a year and I feel the same as I did all that time".

Since I had some underlying inclinations that MS was what I truly had and either didn't have enough symptoms yet or the right doctor to diagnose me, I feel like I am pretty well aware of the basics of the disease after reading everything I could find. A lot of it was in looking for answers to the vestibular loss and paths crossed.

I told the person who asked about the telethon that they were MORE then welcome to contribute to me financially if it would make them feel better

 
Old 02-14-2010, 07:41 PM   #13
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Re: Newbie info on Rebif

haha. Its terrible, but we all go thru this. Sorry youre not any different. People need to be educated, which is a good part of why Im on healthboards so often- helping people who are scared to death learn to cope with this....it IS scary, but it is also manageable!
As for the rest of the world...just keep smiling- eventually they will stop "knowing someone who knows someone who KNOWS SOMEONE" who is fine.

Meanwhile, be yourself. Sounds like you are handling things absolutely fine.
Hugs
Nikki
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Old 02-15-2010, 05:39 AM   #14
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Re: Newbie info on Rebif

Quick question,,,Does anyone have any suggestions on whether taking fish oil, omega 3, or vitamin D actually help????

 
Old 02-15-2010, 03:31 PM   #15
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Re: Newbie info on Rebif

Tiffany Id start a new thread since this one is about Rebif...but the answer is yes, they do help. However, I dont want to monopolize this thread (about Rebif) with suppplement questions, so if you start a new one, ill give you more info....
Nikki
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