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Old 09-16-2012, 04:32 PM   #1
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Thumbs up Considering Rebif

Hello, has anyone taken rebif for awhile and if so can you tell me about any side effects. I am considering it but I have not heard anything good about it so far!!

 
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Old 09-16-2012, 06:01 PM   #2
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Re: Considering Rebif

Hi there. I took rebif for almost 6 years. I started it immediately upon my diagnosis and was very successful with it. No relapses, no new symptoms for almost 5 years.

I wont lie. The first month is easy....the second through fourth month, you WILL get flu like side effects from the shots. The medicine is titrated, so you start low and by month 3 are at full dosage. Thats when they are the worst; however, you ONLY get side effects 6-10 hours post shot. Most people sleep through them, and you will feel fine on non shot days. Rebif is 3 times a week...after the fourth month, your body gets used to the side effects and they will stop completely.

The injection site reactions are small round bullseyes. They DO heal and go away, and take about 24 hours to show up and about 36 hours to fade..by then, you have a new one. So, you will constantly have a red circle from your last injection at some point on your body. You do not get dimpling of the skin and the red marks go away completely...

However, with me, I built up antibodies to the Interferon. They are called Neutralizing antibodies and at one time they were considered very rare; however Rebif now includes literature on the packaging suggesting after two years, you get tested regularly for these antibodies. When they developed, I was sick every day for months. I developed melanoma on my body which resulted in 5 surgeries, having precancerous cells removed....I had infection after infection. Once I stopped the Rebif, I immediately felt better.

The side effect of depression doesnt affect everyone. I am not a depressive person, but I will admit, the entire time on Rebif, I felt that I was in a fog. I wasnt myself. My husband called me moody- and I know that I was constantly feeling like I was struggling to stay in control. That also went away within 3 weeks of stopping Rebif. I hated how it made me feel;however I did very well on the drug.

I started with over 50 lesions. I was drug free for about a year when I started LDN, Ive been on that now for a year and now have over 100 lesions. I work fulltime, until June, went to school for my post graduate degree and also have 3 kids and a household to run. I am not disabled in anyway- and you would never know I have MS. All this, with 100 lesions! The moral of this story is "was it the Rebif which kept new plaques from forming? Or was it the nature of my disease?" I was MRId every six months for the past 7 years...it wasnt until I went off Rebif that new lesions formed...

I hated the drug, but admit that it kept me stable...whatever you decide, all I can suggest is that you take the bloodwork seriously and have it done every six months minimum to screen for antibodies....Ive heard of more and more cases of people developing them since I first learned that its possible.

Good luck to you.
Nikki
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Old 09-17-2012, 11:11 AM   #3
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Re: Considering Rebif

Hi: I started on Rebif after an being on Copaxone for over 4 years. I loved the Copaxone other than the marks it left on my legs, however they did mostly heal after I stopped taking them (lipoatrophy).

On the Rebif, at first, I loved it because the shots were so easy to do. I did have flu-like side effects, and then became slowly disabled. It came about that Rebif gave me bone marrow failure. This is a rare side effect. I had to stop it and all Interferons. I am now on Tysabri.

My platelet count never recovered fully and I have to get platelet infusions regularly.
Just go into it like all drugs knowing the potential side effects. If you don't like the drug, stop it and try another.

I chose Copaxone for the lack of physical side effects and no effects on the liver, thyroid, and blood. It does come with the threat of immediate reaction which is rare. I had it a couple of times when I forgot to let the med warm up before injecting it out of the fridge. It is scary but not life-threatening and ends quickly. The bone marrow failure was life threatening.

Most people have no problem with Rebif. However, there have been new studies out stating that interferons have none, or little effect on disability. Read up on these before choosing one. Copaxone, LDN, and Tysabri are not Interferons.

Just do your homework.

It is a hard choice. No doubt, but one that is between you and your neurologist.

 
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Old 09-17-2012, 01:23 PM   #4
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Unhappy Re: Considering Rebif

Thank you This is a very hard decision. I have been diagnosed for 17 years and after the 5th or 7th year I decided that I would not take any more of the drugs. However, my neurologist keeps trying to get me to take them. I know she's trying to help but I feel as if the risk out weigh the posiblity of and advantage. I am so confused right now. Seeming that I am going through other medical problems that may be connected to the MS.

 
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Old 09-17-2012, 02:18 PM   #5
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Re: Considering Rebif

When you decide, whatever you decide, do not make any decision in which you feel pressured into making. Read and understand everything and make your decision based on what you want for your life and your own health. Remember that the meds do not work for everyone, there are side effects for most meds, and that the meds are not a cure. Whatever you decide, you have to decide for yourself.
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Old 09-17-2012, 02:28 PM   #6
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Re: Considering Rebif

Hi. I understand how difficult a decision it is. I actually tried Copaxone myself, before Rebif. 2 shots and 2 trips to the ER- and it was deemed I was allergic to something in it. I almost died the second time.

LDN is a non MS approved drug. Its used in Europe and Australia as a MS med...the drug itself, Naltrexone, is approved in the US, but not for MS. When used as a drug for opiate addiction, its given in 200 mgs or more up to 3 times a day, when its used for MS, its a capsule of anywhere from 3 to 4.5 mgs taken once a day at night. I have been on LDN for over a year now. Can I say that clinically, I feel fabulous? Unforutunately, as I stated before, I now have many more lesions...it isnt designed to stop progression but to help with symptom manangement. Its also a drug that needs to be compounded, and can only be gotten from a compounding pharmacy, but maybe you would benefit from it? Talk to your neuro and see what he thinks.

Whatever you decide, we are here for you....its a very personal decision, but if we can help, please let us know.
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Old 10-14-2012, 12:44 AM   #7
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Re: Considering Rebif

What is LDN? All this is new to me; they only have Refib or Avonex here in Japan. I have decided on Refib. Will see my doc tomorrow.

 
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Old 10-14-2012, 06:43 AM   #8
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Re: Considering Rebif

Quote:
Originally Posted by texas71 View Post
What is LDN? All this is new to me; they only have Refib or Avonex here in Japan. I have decided on Refib. Will see my doc tomorrow.
Low Dose Naltrexone. It is available in Japan, but it is not an MS drug in Japan (nor in the US). Your doctor should be able to get it if you want to try it.
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Old 10-14-2012, 06:47 AM   #9
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Re: Considering Rebif

I am in the military nod that's the only two they have.

 
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Old 10-14-2012, 06:50 AM   #10
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Re: Considering Rebif

Yes, I remember. The LDN can be used for MSers if the doctor is willing to prescribe it. Under the US Military, I rather doubt it is an option!
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Old 10-14-2012, 06:52 AM   #11
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Re: Considering Rebif

Yeah you know how that goes; so I will do Rebif and keep y'all posted

 
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Old 10-14-2012, 10:47 AM   #12
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Re: Considering Rebif

I was on Rebif for 8 years and have also tried LDN, Tysabri and now Gilenya. The new data on interferons is less supportive of the benefits. I would ask my dr to review the data with me to support a decision/choice of the drug. I did not realize how poorly I felt on therapy until after discontinuing Rebif. Although I slept through the majority of flu-like symptoms I did constantly feel sluggish and in a fog...almost mild hangover-like. I had major site reactions that would remain for 2-3 months at times and did experience 2 areas of lipoatrophy that will always remain. I did have occasional mild relapses and a few new symptoms. Major injection fatigue was the deciding factor for a change to Tysabri which worked very, very well. I had no visible side effects at all and no new symptoms or relapses but developed antibodies so have moved on to Gilenya. Again, no visible side effects. Because you titrate up to full dose on Rebif you don't notice the way you feel on it as it is a gradual transition. You become accustomed to feeling poorly without realizing it.

 
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Old 10-14-2012, 01:05 PM   #13
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Re: Considering Rebif

Quote:
Originally Posted by linkydink View Post
I was on Rebif for 8 years and have also tried LDN, Tysabri and now Gilenya. The new data on interferons is less supportive of the benefits. I would ask my dr to review the data with me to support a decision/choice of the drug. I did not realize how poorly I felt on therapy until after discontinuing Rebif. Although I slept through the majority of flu-like symptoms I did constantly feel sluggish and in a fog...almost mild hangover-like. I had major site reactions that would remain for 2-3 months at times and did experience 2 areas of lipoatrophy that will always remain. I did have occasional mild relapses and a few new symptoms. Major injection fatigue was the deciding factor for a change to Tysabri which worked very, very well. I had no visible side effects at all and no new symptoms or relapses but developed antibodies so have moved on to Gilenya. Again, no visible side effects. Because you titrate up to full dose on Rebif you don't notice the way you feel on it as it is a gradual transition. You become accustomed to feeling poorly without realizing it.
Welcome Linkydink! Thanks for sharing your experiences!
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Old 10-14-2012, 04:02 PM   #14
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Re: Considering Rebif

Hi, I have been on rebif since June 2011. I guess I am one of the "lucky" ones - I have never had flu like symptoms. I sometimes get a minor headache and I take 2 advil and it goes right away. Even after all this time I do still get that headache sometimes.
The only thing I will mention is that I was on 22 mcg for 6 months before I went to see an MS specialist who had me go up to full dose 44 mcg. I don't know if that has anything to do with me never having the flu like symptoms.
I remember being so scared of the flu like symptoms. I used to take the shots before bed just in case so it would not mess with my work day.
Hope this helps.

Last edited by KingBaxter; 10-14-2012 at 04:09 PM.

 
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