Anyone with GOOD Experiences on Rebif??

A board to discuss the Multiple Sclerosis modifying drug Rebif

Re: Anyone with GOOD Experiences on Rebif??

Postby NHE » Tue Dec 27, 2011 3:35 pm

Maledicte wrote:I am lucky in the fact I've had 0 side effects. The injections just HURT like crazy since I went to 44's
MS lifelines nurses told me take them out of fridge on mon and that you can have them unrefrigerated up to 30 days, just don't exceed room temp of 75, which is no prb since its usually in 50's in the house, I feel so awful for ppl who have had bad experiences w/rebif
Frankly I was so shocked i had none, as i usually get side effects to everything


I have read of people putting the syringes under their arm for a minute or two to warm them up prior to injection. This might help.

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Re: Anyone with GOOD Experiences on Rebif??

Postby Maledicte » Tue Dec 27, 2011 10:33 pm

NHE wrote:
Maledicte wrote:I am lucky in the fact I've had 0 side effects. The injections just HURT like crazy since I went to 44's
MS lifelines nurses told me take them out of fridge on mon and that you can have them unrefrigerated up to 30 days, just don't exceed room temp of 75, which is no prb since its usually in 50's in the house, I feel so awful for ppl who have had bad experiences w/rebif
Frankly I was so shocked i had none, as i usually get side effects to everything


I have read of people putting the syringes under their arm for a minute or two to warm them up prior to injection. This might help.

NHE


I haven't heard of that, the nurses told me hold in my hand like 5 mins before, but keeping it out a week or so stops the cold part, it's the going to 44's the nurses say is the prb for most ppl, its a lot of meds going in, it just hurts, mostly in the leg, which they said is the most painful area for most
i just cuss to myself and it stops hurting in 5-10 mins
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Re: Anyone with GOOD Experiences on Rebif??

Postby NiftyBunny » Fri Dec 30, 2011 7:30 am

I'm the same way NHE. I have side effects for everything but my side effects with Rebif are fairly mild. I agree that the shots hurt ALOT. I use the Rebiject (please don't tell me to throw it out and do syringes, I don't find it bruises me alot and my husband and I are both way to squeamish to do the needles the traditional way.) so the coldness is not a problem as the cartridge sits in the machine for two days after I refill it before I use it.
~You get scared, you get lost, you get confused, but in the end, Alice makes it out of Wonderland.~
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Re: Anyone with GOOD Experiences on Rebif??

Postby Froggie » Fri Dec 30, 2011 2:55 pm

NiftyBunny,

I know you said you and your husband are squeamish about injections, but I would recommend doing the shots manually. I am not a big fan of needles myself, but I got over it. All things considered, the needle itself is rather small compared to Avonex or the size of the needle for a lumbar puncture. With the Rebiject, you don't have as much control of the speed at which the liquid is going in to your system. I found it was going in too fast and causing a lot of pain in the process. I also found the action on the Rebiject was like a jackhammer. Manual injections are really easy once you get the hang of them. Neither you nor your husband should be afraid of them! My husband took over doing my injections and the process goes so much faster. I think from the time I ask if he's ready to do it and throwing away the syringe is all of 45 seconds. I also learned to do them myself. You might also try evacuating the air from the syringe before injecting it.
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Re: Anyone with GOOD Experiences on Rebif??

Postby deb3 » Mon Jan 02, 2012 8:35 am

I've been on rebif for 2yrs. Took aleve prior to at first. Now don't. No side effects other than reddness at site. Do better with self injections given slowely and med at room temperature.
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Re: Anyone with GOOD Experiences on Rebif??

Postby NiftyBunny » Mon Jan 02, 2012 10:39 am

I appreciate everyone's support... but as I said please STOP telling me to not use the Rebiject anymore. I don't have problems with it... I do not find it to be too brutal, it barely bruises me and I don't have to see the needle and can do it without any help. I'm sure that like anything it depends on the person... it may not be the best option for everyone, and if you like the manual injections better then all the power to you. I have chose the machine. It works best for me in my situation and I definitely do not want to try manual unless I have to. To anyone going on Rebif and reading this, if you want to try the machine, try it. I have no problems with it.. yes, it stings, but that is the medication, not the machine and its over fast. I don't want this forum scaring people off from trying the Rebiject because some people have decided against it. It truly is individual.
~You get scared, you get lost, you get confused, but in the end, Alice makes it out of Wonderland.~
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Re: Anyone with GOOD Experiences on Rebif??

Postby Maledicte » Mon Jan 02, 2012 6:30 pm

NiftyBunny wrote:I appreciate everyone's support... but as I said please STOP telling me to not use the Rebiject anymore. I don't have problems with it... I do not find it to be too brutal, it barely bruises me and I don't have to see the needle and can do it without any help. I'm sure that like anything it depends on the person... it may not be the best option for everyone, and if you like the manual injections better then all the power to you. I have chose the machine. It works best for me in my situation and I definitely do not want to try manual unless I have to. To anyone going on Rebif and reading this, if you want to try the machine, try it. I have no problems with it.. yes, it stings, but that is the medication, not the machine and its over fast. I don't want this forum scaring people off from trying the Rebiject because some people have decided against it. It truly is individual.


I use auto injection, I can't do manual, my hands shake
too much, I won't tell you not to use.auto inject
I CAN'T do manual, and I don't want to hear ways to manually do it
You can't fix my shaky hands nor can you make it so I don't walk w/o a cane, nor not trip on stairs
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Re: Anyone with GOOD Experiences on Rebif??

Postby NiftyBunny » Mon Jan 02, 2012 7:54 pm

I hadn't even though about it but my hands shake too... that would also be problematic with manual injections.
~You get scared, you get lost, you get confused, but in the end, Alice makes it out of Wonderland.~
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Re: Anyone with GOOD Experiences on Rebif??

Postby Froggie » Mon Jan 02, 2012 9:07 pm

If the Rebiject works for you, that's great! I'm fortunate to not have the hand shakes and a husband who's extremely proficient with giving shots. One less thing for me to worry about. I too, however, trip on stairs and even flat surfaces like sidewalks. My vision is sufficiently compromised where my depth perception is really bad. Going down stairs is difficult and I avoid them when possible. We all have to do what's efficacious for ourselves.
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Re: Anyone with GOOD Experiences on Rebif??

Postby Maledicte » Wed Jan 04, 2012 4:53 pm

Froggie wrote:If the Rebiject works for you, that's great! I'm fortunate to not have the hand shakes and a husband who's extremely proficient with giving shots. One less thing for me to worry about. I too, however, trip on stairs and even flat surfaces like sidewalks. My vision is sufficiently compromised where my depth perception is really bad. Going down stairs is difficult and I avoid them when possible. We all have to do what's efficacious for ourselves.

'
I.don't want to sound like oh yay, someone else who trips
on flat surfaces, its so embarrassing, having ppl.stare like wtf is
wrong w/you? I hate going out in public, in grocery stores I find holding on
to the cart helps me walk in the store
Its about as much as I go out, besides to bead shoppes
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Re: Anyone with GOOD Experiences on Rebif??

Postby Froggie » Thu Jan 05, 2012 8:43 pm

Maledicte,

Have you ever explored physical therapy? It might help with your mobility. I did a short stint not too long after I was diagnosed and I was re-learning how to walk. It may sound trivial, but it's amazing how much we have to overcompensate and focus on not tripping, falling over, etc. The therapist's goal was to have me not look at my feet so much and to walk without over-thinking it. Easier said than done, but it's worth a shot.
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Re: Anyone with GOOD Experiences on Rebif??

Postby Maledicte » Sun Jan 08, 2012 6:44 pm

I can't afford it
No.$.
And no insurance
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Re: Anyone with GOOD Experiences on Rebif??

Postby Froggie » Sun Jan 08, 2012 8:46 pm

Depending on where you live, there might be local programs that can help you. When I lived in Western North Carolina, the county that I lived in had an organization consisting of local physicians that donated their time to help individuals that were uninsured/low-income get medical attention. It was called Project Access through the Buncombe County Medical Society Foundation. That was how I was able to get MRI's and physical therapy before Medicare kicked in. Your local health department or physician may be able to steer you in the right direction.
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Re: Anyone with GOOD Experiences on Rebif??

Postby Maledicte » Tue Jan 10, 2012 8:45 am

Now I'm.getting side effects
I feel like hell, rundown, shivery, headache, diheara

And I'm never calling ms lifelines again, she was a cold b*tch
I hate this
My neuro didn't listen yesterday
I'm so tired of this
I HATE MS
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Re: Anyone with GOOD Experiences on Rebif??

Postby NiftyBunny » Tue Jan 10, 2012 9:37 am

Maledicte, I totally get where you're coming from. I too tend to HATE MS. Often I find that it is a personal battle. No matter how much people may want to help or how much we want them to help, often its something only you can do for yourself. I hate it alot... sometimes I even hate myself for not being stronger about it. I've always been the strong one that gets through anything, I'm not used to being handed something I can't fix. My side effects have been getting worse lately too. Not sure whats up, maybe I'm getting a flu or something or could be a relapse or could just be luck of the draw. However, know that even though alot of the time MS is a solo battle, you're never alone in it (if that makes sense lol). There are lots of us fighting our own MS battles and at the very least we can offer an understanding ear (or set of eyes as the case may be). If you ever want to vent, or just to have another friend, please feel free to send me a personal message on here. That also goes for anyone else reading this.
~You get scared, you get lost, you get confused, but in the end, Alice makes it out of Wonderland.~
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