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Old 07-07-2012, 04:37 AM   #1
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First injection of Rebif

When I was first diagnosed, I searched numerous health board posts to help in determining my treatment choice. Because I was able to obtain so much valuable information from posters, I thought I'd return the favor and leave some feedback for others. I hope it is helpful.

I had my first injection of Rebif last night. The injection training nurse was very sweet and tried her best to reassure me. Because I had worked myself up so much about the medication and the injection itself, I was not able to push the button on the auto injector. My wonderful husband did the honors. After he did so, I was quite frankly shocked at the feeling. Not at all what I had expected. It was basically painless. Of course I chose my leg, thinking it would be the least painful site and my hope is that all sites will be similar.

So far no obvious side effects but I have to keep in mind that this is a very minimal dose during titration. Thanks to everyone on the boards for their posts, it's been helpful!

(Just noticed my signature needs updating. Will do so with next post.)
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MS Dx May 22, 2012
Started Rebif July 6, 2012

 
Old 07-07-2012, 07:32 AM   #2
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Re: First injection of Rebif

Thanks for your update and thanks for sharing. I am sure others considering your path of treatment can learn from your experiences!
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Old 07-07-2012, 11:39 AM   #3
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Re: First injection of Rebif

Hi and congratulations on your first injection! Huge step!!!

I will offer you my own experience, which is get to the point (quickly) where you can do your own injection...dont depend on anyone else. The feeling of doing it yourself, the independence - not to mention the ability to do so without being afraid just in case your husband isnt around on shot night- gives you a sense of indepedence which cannot be matched...its an important part of taking control of your MS. But, the first shot is scary, and I certainly am not putting you down for needing that extra edge your husband gave you by pushing the button. Youll get there....just dont get dependent on someone else doing it for you.

Rebif, side effects, do not start until you hit 44 mcgs. You are good to go for the next 6 weeks...if you have side effects, they will start with the first shot of 44 mcgs and kick in about 2 hours post shot and last about 8 hours. My advice is to use Aleve, which lasts 12 hours, about an hour before that shot, and try to go to sleep before they kick in. If you can sleep thru the worst of it, youll be fine.

The side effects DO stop eventually, about 2-3 months in, your body will be so used to the drugs that you wont have to take anything pre injection or have any post injection problems.

I was on Rebif for almost 6 years..Im actually considering going back on it, if its possible. I had some antibody problems, and Im looking into now finding out if the antibodies are gone, if I will be a candidate for starting it again.

Anyway, best to you and keep at it. Youre well on your way to controlling your disease!!

Nikki
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Old 08-09-2012, 09:48 PM   #4
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Re: First injection of Rebif

Congrats on your first injection!

I was diagnosed at the end of January and started Rebif mid-February.
The worst part of it for me was getting over the mental road block of the injections. I use the autoinjector for the first month or so and each time it was injection time I had to mentally talk myself into it for about 30 minutes. I would remind myself that it was just a shot and that it didn't hurt.

I looked at my nurse like she was crazy when she told me that a lot of people preferred to do the manual injection. So I know how insane it sounds. However, six months into my injections, I have to say that I DEFINITELY prefer the manual injections to the autoinjector. I think the noise of the auotinjector makes my brain really anxious. So, it's much easier for me to control the injection manually.

Like I said, I know how crazy it sounds - but, if you're like me, about a month and a half into injections you'll reach the point where you can't see direct results so you convince yourself that the medicine is doing nothing but making you feel tired and achy. And at that point, I recommend trying it manually.

 
Old 08-10-2012, 07:26 AM   #5
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Re: First injection of Rebif

Well done on getting your first injection done. I have been on Rebif for almost 3 years now! Did your MS nurse not help you with your first actual couple of injections? Mine came round for the first two. I did the first one using Rebinject into my leg and the next one manually into my stomach. I hated the idea of using the autoinjector on my stomach.

I did as I was told for ages, rotating around my body and I found that the only site reaction marks that I got were small but on my stomach where I was injecting manually.

I eventually tried injecting with the autoinjector into my stomach and OMG it is so much better. Very small injection mark, if anything.

I do still experience a small headache even after all this time and I have extra weird dreams on my injection nights but it's nothing really bad. I can only take paracetamol with it which might explain something.

I am also only on rebif 22 because I can't tolerate 44 and my liver function test results keep rising a little each time I have my bloods taken so I'm not sure how much longer I'll be on it but I have improved since I started taking it.

Not sure if it's my MS diet, Rebif, vitamin D3 or reducing my stress but I have improved dramatically.

 
Old 08-12-2012, 07:03 AM   #6
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Re: First injection of Rebif

Rwaltrip ~ Thanks for the post. Just like you predicted, I'm now at a point where I'm doubting my medication choice. I had just completed my first full week at Rebif's full dose and feel so achy most of the time. I don't see any improvement just the opposite, I feel worse. I understand my body has to get used to the medication but I'm having trouble being patient. Not sure if I could do the manual injections but will take your advise and atleast try. Does the sting of the injections lessen when you do a manual injection?



Quote:
Originally Posted by rwaltrip View Post
Congrats on your first injection!

I was diagnosed at the end of January and started Rebif mid-February.
The worst part of it for me was getting over the mental road block of the injections. I use the autoinjector for the first month or so and each time it was injection time I had to mentally talk myself into it for about 30 minutes. I would remind myself that it was just a shot and that it didn't hurt.

I looked at my nurse like she was crazy when she told me that a lot of people preferred to do the manual injection. So I know how insane it sounds. However, six months into my injections, I have to say that I DEFINITELY prefer the manual injections to the autoinjector. I think the noise of the auotinjector makes my brain really anxious. So, it's much easier for me to control the injection manually.

Like I said, I know how crazy it sounds - but, if you're like me, about a month and a half into injections you'll reach the point where you can't see direct results so you convince yourself that the medicine is doing nothing but making you feel tired and achy. And at that point, I recommend trying it manually.
__________________
MS Dx May 22, 2012
Started Rebif July 6, 2012

 
Old 08-12-2012, 07:17 AM   #7
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Re: First injection of Rebif

Keeno, Thanks for your post! It's nice having some feedback from someone experienced. My nurse came out for my first injection but I just couldn't push the button so my husband did that. She never came out or called after that first visit.
Aside from the headache and odd dreams, do you experience any other side effects? I've read some posts about others that have had a major set back after so many years and had to come off the drug. That concerns me. I'm curious how typical that is.
I've been curious about an MS diet. Where do you find your information about that?
Thanks!


Quote:
Originally Posted by keeno View Post
Well done on getting your first injection done. I have been on Rebif for almost 3 years now! Did your MS nurse not help you with your first actual couple of injections? Mine came round for the first two. I did the first one using Rebinject into my leg and the next one manually into my stomach. I hated the idea of using the autoinjector on my stomach.

I did as I was told for ages, rotating around my body and I found that the only site reaction marks that I got were small but on my stomach where I was injecting manually.

I eventually tried injecting with the autoinjector into my stomach and OMG it is so much better. Very small injection mark, if anything.

I do still experience a small headache even after all this time and I have extra weird dreams on my injection nights but it's nothing really bad. I can only take paracetamol with it which might explain something.

I am also only on rebif 22 because I can't tolerate 44 and my liver function test results keep rising a little each time I have my bloods taken so I'm not sure how much longer I'll be on it but I have improved since I started taking it.

Not sure if it's my MS diet, Rebif, vitamin D3 or reducing my stress but I have improved dramatically.
__________________
MS Dx May 22, 2012
Started Rebif July 6, 2012

 
Old 08-12-2012, 03:18 PM   #8
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Re: First injection of Rebif

I only experience a headache and weird dreams and nothing else. I've only had one night of flu like side effects which would have stopped me having rebif if They'd have been a regular thing!

The ms diet I follow is the swank diet but the other diets out there follow the same principals. It's basically s low fat diet. Keeping sat fat to under 15g a day! Google it, there is a website and forum!

 
Old 08-12-2012, 03:18 PM   #9
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Re: First injection of Rebif

Hi. Hope you dont mind if I put in my two cents. I was on Rebif for 6 years and for 5 of them, loved the drug.
First of all, its not unusual that the MS lifelines nurse didnt come back, they normally only come once ; but she should be calling within 30 days to make sure you are doing okay, and you can call them if you are having any problems, OR if you want them to come back and practice showing you how to use the syringe without the injector...

It does hurt less without the injector- and the site reactions are smaller; howevr with Rebif, you will have a bullseye, red spot, wherever you inject for about 2-3 days...long enough to get a new one, in a new place, with the next injection. For 6 years, I constantly had an area on my body with a red mark and as time went on, they became more and more sore...

Rebif also causes lipoatrophy, the hardness under the skin which balls up and causes scar tissue wherever you inject.....takes about 2 years for this to start, but it does happen. Dont let anyone tell you it doesnt. If you are very thin, like I am, it will be noticable, if you are carrying some extra subcutaneous fat, you may not notice it.

Also, Im one of the those people who had to come off Rebif.....I started geting very sick after 5.5 years. I was in the hospital with everything from skin problems to flu like issues which didnt go away with high antibiotics....after finally doing intense blood work, the doctors found that I had developed antibodies to the Interferon....they say its rare, but I now know of more than a dozen people who also developed the antibodies after 5 years.....I was poisoning myself and making myself sick. I came off Rebif and within 6 weeks started to feel more like myself.

As much as the drug kept me stable, I hated what it did to me mentally. I was constantly in a cog fog; my memory was shot- i was moody - like I was in constant PMS. I almost lost my marriage at one time because I was such a mess.....since coming off Rebif almost 18 months ago, im back to being myself..

Now that being said, Im also seeing new lesions....and thinking of going back on another drug- but I will NEVER do interferon again.

You have to really weigh the odds of risks vs benefits with your drug of choice...you dont want to progress, but you dont want to make yourself sicker either.

Its a tough choice - but whatever you do, please make sure you monitor your blood work regularly and if you stay on it more than 3 years, start testing for antibodies...

Nikki
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Old 08-12-2012, 06:23 PM   #10
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Re: First injection of Rebif

Nikki, I appreciate all the specific details you list. Some things that happen, I wonder if it's just me and it helps to know it happens to others. For instance, the fog. I've recently noticed how "off my game" I've been mentally. Thanks for the post and the heads up on it all.
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MS Dx May 22, 2012
Started Rebif July 6, 2012

 
Old 08-15-2012, 02:40 PM   #11
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Re: First injection of Rebif

May I ask what side effects?

 
Old 08-30-2012, 11:10 AM   #12
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Re: First injection of Rebif

Quote:
Originally Posted by MSNik View Post
Hi. Hope you dont mind if I put in my two cents. I was on Rebif for 6 years and for 5 of them, loved the drug.
First of all, its not unusual that the MS lifelines nurse didnt come back, they normally only come once ; but she should be calling within 30 days to make sure you are doing okay, and you can call them if you are having any problems, OR if you want them to come back and practice showing you how to use the syringe without the injector...

It does hurt less without the injector- and the site reactions are smaller; howevr with Rebif, you will have a bullseye, red spot, wherever you inject for about 2-3 days...long enough to get a new one, in a new place, with the next injection. For 6 years, I constantly had an area on my body with a red mark and as time went on, they became more and more sore...

Rebif also causes lipoatrophy, the hardness under the skin which balls up and causes scar tissue wherever you inject.....takes about 2 years for this to start, but it does happen. Dont let anyone tell you it doesnt. If you are very thin, like I am, it will be noticable, if you are carrying some extra subcutaneous fat, you may not notice it.

Also, Im one of the those people who had to come off Rebif.....I started geting very sick after 5.5 years. I was in the hospital with everything from skin problems to flu like issues which didnt go away with high antibiotics....after finally doing intense blood work, the doctors found that I had developed antibodies to the Interferon....they say its rare, but I now know of more than a dozen people who also developed the antibodies after 5 years.....I was poisoning myself and making myself sick. I came off Rebif and within 6 weeks started to feel more like myself.

As much as the drug kept me stable, I hated what it did to me mentally. I was constantly in a cog fog; my memory was shot- i was moody - like I was in constant PMS. I almost lost my marriage at one time because I was such a mess.....since coming off Rebif almost 18 months ago, im back to being myself..

Now that being said, Im also seeing new lesions....and thinking of going back on another drug- but I will NEVER do interferon again.

You have to really weigh the odds of risks vs benefits with your drug of choice...you dont want to progress, but you dont want to make yourself sicker either.

Its a tough choice - but whatever you do, please make sure you monitor your blood work regularly and if you stay on it more than 3 years, start testing for antibodies...

Nikki
Nikki

Thanks so much for posting this! I've been struggling with insecurity and anxiety since the end of July and thought it could have been because I stopped my pill (which could have contributed) but after reading your message I googled rebif and mental health issues and discovered a link! I literally went from happy and normal me one day to sad and confused me the next! It was horrible!

I stopped taking rebif for over a week and started to feel better and I'd not realised the mental fog I'd started living in recently was down to the rebif either but that started to clear as well. Not 100% but getting there. Anyway I spoke with my nurse who after speaking with the consultant said I should start the injections again. I did last night and today I've been back in a fog and my thoughts are back downhill!

I'm going to tell my nurse tomorrow that that's it for me and rebif and take a break for a few weeks before starting copaxone!

 
Old 08-30-2012, 11:32 AM   #13
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Re: First injection of Rebif

Thanks for your update. AND thanks for sharing your personal experiences. You can touch many MSers with that information.
__________________
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MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
Old 08-31-2012, 03:34 AM   #14
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Re: First injection of Rebif

Keeno,
You are welcome. Be aware however that Copaxone is not as strong as Rebif; and that you are not going to be as well protected from attacks for some time. Like Rebif, Copaxone takes up to 6 months to build up to full strength in the blood stream. Be vigilent about talking to your doctor if you notice any other signs or symtoms of changes.

I had actually tried Copaxone first and couldnt tolerate it. Im allergic to something in it and had severe reactions. Rebif was much more tolerable for me, until it stopped working due to building up of Antibodies.

I had no idea that I was in the state I was in, until I went off it.. Others noticed I wasnt myself, however I was so used to feeling awful, I hadnt realized it immediately. IT only took me 2 weeks before I felt like myself again once stopping Rebif. Im glad you were able to glean something from my experience.
Best of luck with copaxone!
Nikki
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