Calling all Rebif Users both Past & Present

[hungary]

I have been on rebif for 2 years now. My question to all who are on or have been on Rebif is: do the areas where you have injected hurt? I don't mean right after the injection or even 1 week later. For example, both of my upper legs hurt when I lean against a counter top, even though I have not injected there for over 3 weeks. My hip areas where I have injected will ache as well if I turn just right when I am sitting down.

I am actually thinking of taking a break from Rebif. I didn't expect painful areas when I haven't injected for weeks at a time in a certain area. Has anyone else experienced what I am talking about? If so, what did you do about it?

[dontstopbelieving]

Hi hungary im sorry to hear your having a tough time. I have been on rebif since last august and I've never experienced any pain or sore injection sites. the only thing that bothers me is the injection site reaction.
do you use the rebi-ject?
I don't. i manually inject by resting the needle on my skin until it slowly accepts it. it's an easier and almost kinder way to do it. i felt as if the rebi-ject was too violent, maybe you could try injecting differently? and i would recommend asking your neuro for advice.

good luck and let us know how things go :]

[babygirl_vic]

I have been on Rebif since July 2010 and I experience the side reactions and site soreness!! My arms don't get the reactions but I do havethe soreness, my stomach and legs are the worst and I have had to not use my legs/stomach for like a month because of it. And then I have to use my arms more and then they are SO sore!! Just remember if you "take a break" then you have to start all over!! I don't know about you, but I'm NOT going back through that!!

I also manually inject myself I have never used the auto-injector!! I don't like the element of surprise and I do it very slowly!!

Hope everything gets better!! Are you doing the warm compresses 2mins before and after??

[aitch10]

I took rebif for 5 years and never felt the pain you're describing. Have been back on it since January and now I notice it. I try and rotate where I inject, but I still have these areas on the front of my things that are sore all the time.

::shrugs::

[hparks]

Rebif

I've been on Rebif since Sept. 2010, and get all kinds of side-effects. I like to call it spinning the roulette wheel when I do an injection; "who knows what side-effect I'll have this time; only the wheel knows". The injection sites will turn red (of course) but also bruise some times. I used the reboject once or twice, but found that it burns like I'm injecting battery acid! I don't use it anymore and instead just (as I like to call it) freestyle the shot (a.k.a. manually). It does hurt or bruise as much, since I can control how fast the med is going in. These medications are like the disease; it's different for everyone. When I asked about the Rebif being acidic in nature, and was that why it burned, I was told, "no. It has a neutral pH." I also asked about headaches being a side effect, and again I was told, "no. Rebif, nor m.s., causes headaches". On their behalf, I will say that the info on Rebif does not list "headache" as a side-effect. Unless you lump it in with the "flu symptoms" category.

I don't know which is worse; having a disease that no one knows about, or a drug to help with it that no one knows about. That's why I get 99% of my information about what works, doesn't work, and medication information from other with m.s.. Why ask a doctor when you can go to an expert!

[Nurseypoo]

Rebif Side Effects

I've been on Rebif for 2 yrs also, and from day one I've gotten nasty looking red blotches at the site of injection and those areas hurt for a long while. I notice when my body temperature has risen or if I'm hot (like if I'm working out) those areas tend to become more prominent and red. Sometimes the areas itch but most of the time they just hurt. I have never used the autoinjector, being a nurse I think I'm OCD about being in control of the needle.. LOL.

I would def advise your neuro before you take a break from it though. There's been a few time that I've stopped the Rebif, whether it was an insurance issue or I just forgot, and every time I've gotten a slight flare up of symptoms which set me a few steps back. Good luck!

[cnmauston]

rebif

I used rebif for a few years. I didn't experience the soreness at first but did near the end. I was only sb taking a break for a year but did fine without for 3 years.

[JamCakes]

I've been taking Rebif for 5 years. I am only doing shots in my thighs, and the shot sites are always angry purple. Sometimes it hurts.

But my thighs have been numb and burning for 3 years. Sometimes itchy. My neurologist doesn't think it's related to MS. I asked her if it's related to my shots, she doesn't think so.

Now the past week I have a growing lump in my left thigh where I give the shots. It is hot, extremely painful, and did I mention it is growing. It's starting to concern me a little. But I know if I go to the neuro, she'll say -- well, it's probably not related to shots or MS. If I go to Urgent Care, they'll say -- we don't know. Looks like it's related to shots.

Anyone else have a tight knot develop? Like a dense growing cyst in there.

Re: taking a break, I would love to give my leg a break from the shots, but I don't want to ease up on modulating my immune system. If someday I lose my insurance, I will no longer be taking rebif and I am not afraid that I will collapse into disability. But as long as I'm doing well and I can get the medicine, I'm staying on it...

[shortcake23]

Yes, that is the case for me as well... the areas where I usually inject (Rebif) hurt, even if I haven't injected there in a few weeks. I've been on it since August 2008, so almost 3 years.

This is one of the major reasons I'm seriously looking to switch to either Gilenya or Tysabri, although both of these really scare me...

[teacher4life]

Break from Rebif!

I have been on rebif for 2 years now. My question to all who are on or have been on Rebif is: do the areas where you have injected hurt? I don't mean right after the injection or even 1 week later. For example, both of my upper legs hurt when I lean against a counter top, even though I have not injected there for over 3 weeks. My hip areas where I have injected will ache as well if I turn just right when I am sitting down.

I am actually thinking of taking a break from Rebif. I didn't expect painful areas when I haven't injected for weeks at a time in a certain area. Has anyone else experienced what I am talking about? If so, what did you do about it?

Hi Hungary,
I took Avonex for 4 years and have taken Rebif for 7 years - never missed a shot. Ironically, I just spoke with my neuro and he said absolutely I could "take a break" from it. About the soreness - YES, my legs are the worst for sensitivity and soreness.

I don't know if people have taken "breaks" on this med or not, but I've never taken one and I can't wait! I just hope there are no side effects nor exacerbations as a result.

[jankel]

Calling all Rebif Users both Past & Present

YES!!!!!!
I was on Rebif years ago and I know exactly the pain you are experiencing. It's also the reason why I changed to Betaseron.
***The reason for the burning and excruciating pain is because there is acid in the medication. It only seems to effect people with sensitive skin - like me. The medication is premixed and has to have the acid type ingredient. ***

My doctor wanted me to stay in it because he feels it is an excellent medication and works better than most. However I would ice the area down for like an hour - seriously and every time I injected I would literally dance around the room almost in tears from the pain. I researched the medication and found it had some type of acid in it for the premix.

Hope the info helps, by the way I was on it for about 9 months before giving up, trying everthing.

[CocoH]

I just have one spot that seems to be effected that way. It's the lower left side of my abdomen. I just injected there again a few days ago & it still HURTS quite a lot! The last time I injected in that area I felt it for at least a month. Clearly, I need to stop injecting in that area. Luckily, for me, it's just the one area.

[bellsy]

don't wanna do it

I’m going to be starting Rebif soon and I’m scared. I don’t want the flu 3x a week. I don’t want injection site sores. I don’t want to hide from the sun, or wear a parka in the summertime. I do however want fewer attacks.

I’m fearful of needles so I chose Rebif based on the auto-injector, but it sounds like many of you don’t use it that way.

Can you tell me more about HOW you manually inject? Do you just prick the top layer of skin? Is this less painful? Does it cause less reaction?

[shortcake23]

The flu-like symptoms aren't always there, nor are they there every time... it helps if you take Advil or Tylenol half an hour before injecting. And injecting before bed helps as well, since you sleep through the worst part.

I won't lie, I do feel horrible the next day sometimes still (headache, fatigue...) but it doesn't happen every time. I know some people don't experience the side effects for very long (only the first few months), but for me it still happens on occasion, even after almost 3 years...

I find that since I started exercising regularly last November, it's really helped me with my energy level, and I seem to not get affected as much by the side effects...

I use the Rebismart, which is their "electronic" auto-injector...

And you don't have to avoid the sun and wear a parka in the summer!
You just need to be careful to not overheat... so wear a hat or cap, and make sure you get cooled down if you feel hot... there are cooling vests and things you can put on your neck if you feel hot that really helps cool down quickly. You just have to be careful... but I still get to enjoy the outdoors and the sun in the summer time.

[coffeediva]

I use the rebismart injector as well. there is no loud "click" like the rebiject and the meds are slowly injectected. the first time I was terrified but I barely felt the needle! If your really anxious try using emla cream before injecting, it numbs the skin. I have had a few small red spots but they go away within a week, I use Arnica gel to minimize bruising.
I just started on Rebif a month ago and have had very minimal side effects. slight headache in the morning and muscle aches at night. nothing I can't handle
You will be surprised how tough you are, keep us posted.