New MS/Rebif patient needs help

[christysms]

My name is Christy, I have recently been diagnosed with MS and have started my ReBif injections. Today I started a new dose. Can anyone give me any advice or expectations of ReBif? Today I got a little hot headed feeling, burning during the injection, light headed which all just lasted a few minutes.

[babygirl_vic]

Hi, I was dxd in July of 2010 and started Rebif right after. I was took Rebif till a few weeks ago.

Are you doing the injections manually or with the auto-injector? I just couldn't use the auto-injector, It's a control issue for me. But the stinging I had, I found if I injected slowly it was better. Also depended on where I took the shot if it burned more or if I had a site reaction. Don't freak out if you have a red spot that stays for awhile. I haven't taken a shot in my belly in a month and still have the redness spots.

Do you do the warm compresses before and after?

[SilverLinings]

My name is Christy, I have recently been diagnosed with MS and have started my Rebif injections. Today I started a new dose. Can anyone give me any advice or expectations of Rebif? Today I got a little hot headed feeling, burning during the injection, lightheaded which all just lasted a few minutes.

Hi Christy,
I've been on Rebif for about a year and half..started on Avonex but was only on it for a few months before I had a second relapse and my doctor suggested I switch to Rebif. I've been doing great on Rebif. No further relapses, so far, and no new lesions. I used to feel the flu like symptoms in the beginning..fever, muscle ache,headache but these have diminished significantly over time. Some pointers that helped me are
1) drink lots of water on shot day
2) pre-medicate about an hour before shot. I use Aleve.
3) take my shot right before I go to bed so that I sleep through the worst part of the side effects.
4) Aleve the next day if I get headaches...but like I said these have seem to be less and less.
5) Shot location also seems to make a difference..not as it relates to the flu like symptoms but how much the shot burns and how sore it is after. My legs seems to be the worst.

Wishing you the best!
Silverlinings

[christysms]

thanks guys for replying~ like i said i am very new to this so if you posted this a while back i am sorry for not responding sooner. i just found these. i feel like a dits.
~anyway, i have gotten then red spots and the first set of injections there was no pain. the next day after the injections my legs hurt worse. not just the bottom but in my thigh area as well. it was more of a ache that seemed to last all day. i also felt very tired. however as the day went on i felt better. i have also noticed that my fingers feel tight. they dont seem to be swollen but just tight feeling. is this something that either one of you have felt? i did do one injection in my belly and it was a little more unpleasant than the thigh area.
last night i did my first injection of 22 (i think) in my thigh, now that one did burn just a little, for about 30 secs. i also got a hot feeling in my head. have you had that before? and does it go away, any of these feelings?
i know i sound like a idiot but, i dont know anyone with ms. all i know is what i read on the internet. i manage a small family practice where i do get information but then again its family practice so we dont know alot about it.
~ for the person that has taken rebif for over a yr, did your lesion shrink, stay the same, did you get more lesions or anything?
again i greatly appreciate any and all help with this message board and information.

~christy's ms

[SilverLinings]

thanks guys for replying~ like i said i am very new to this so if you posted this a while back i am sorry for not responding sooner. i just found these. i feel like a dits.
~anyway, i have gotten then red spots and the first set of injections there was no pain. the next day after the injections my legs hurt worse. not just the bottom but in my thigh area as well. it was more of a ache that seemed to last all day. i also felt very tired. however as the day went on i felt better. i have also noticed that my fingers feel tight. they dont seem to be swollen but just tight feeling. is this something that either one of you have felt? i did do one injection in my belly and it was a little more unpleasant than the thigh area.
last night i did my first injection of 22 (i think) in my thigh, now that one did burn just a little, for about 30 secs. i also got a hot feeling in my head. have you had that before? and does it go away, any of these feelings?
i know i sound like a idiot but, i dont know anyone with ms. all i know is what i read on the internet. i manage a small family practice where i do get information but then again its family practice so we dont know alot about it.
~ for the person that has taken rebif for over a yr, did your lesion shrink, stay the same, did you get more lesions or anything?
again i greatly appreciate any and all help with this message board and information.

~christy's ms

Hi Christy,
I haven't had the issues you've had with you're fingers but I've had funny/heavy feelings in my right leg but I think this has more to do with the MS than the Rebif. You asked about my lesions after being on Rebif for over a year...so far, knock on wood, I haven't had any new lesions and the ones I do have shrunk. None are completely gone but they're smaller. So for now I will stick with Rebif as it seems to be working for me.

All the best.
Silverlinings

[christysms]

Hi Silverlings,

thank you so much for the reply. believe it or not your last post really has given me hope about rebif. i think i am in the part where i just want to give up. i told my husband the other day that if this doesnt show any improvement i was not going to take it. so this really makes me happy to know it does work.

thanks again,
christy

[SilverLinings]

Hi Christy,

I'm glad you're feeling hopeful and that you found my reply helpful. I was also in a pretty tough spot a year and half ago when I was first diagnosed, not knowing a lot about MS or how to best take care of myself in order to put myself in the best position to slow this thing down...if possible. Honestly, it feels pretty good on this side to be able to help others that have been in a similar situation that I experienced not so long ago.

All the best,
Silverlings

[Tomjadg]

Chrisy

Everyone responds to meds differently. In my case, I did Rebif for 7 months with no improvement, so I changed to Ty. Others have had good results.

As far as the burning, if you are using the auto injector, when you load the syringe, sometimes a drop forms on the end of the needle.
This is what causes the burning.
If you shake or tap the unit before the injection, it will knock off that drop, and no more burning.
It worked well for me, and that was never a problem again.

What silverlinings said also.

I rotated my shots around four areas I liked, so you can see what works best for you. Stomach was easiest.

Good luck.

[christysms]

thanks again everyone! it means alot to me that there are other people out there that are willing to share and help others with MS. this has been really tough for me and my family. it is a life changing experience. has anyone ever had a swelling feeling in their hands? they dont look swollen but the joints feel tight.

~christy~

[JudySz]

I have been on Rebif for I think 2 yrs. At first, I used autoinject, but that stopped after about 6 months. I like using syringe. My red spots went away after awhile. I still premedicate with Alleve, otherwise it hurts. Once in awhile it still stings, but goes away in 5 minutes or so. Stomach is easiest for me and I do not so my butt. One of the new thin places on my body and too hard to reach and just hurts. I also used to warm up area with warm washcloth, but now I just doAlleve about 1 hr. before shot and let it rip. Side effects are minimal for me except last week whn I did shot 2 days in a row. I forgot what day it was and I was pretty yucky the next day. Good luck with Rebif.

JudySz

[khris]

I've been on Rebif 2 yrs now. No longer get side effects and my MRI after one year was "greatly improved" will be due for another in a few months. So far, so good

[christysms]

~judy, thanks so much for the head up on the areas and the pre-medication. it helps alot. i really havent had any flu like symptoms. the next day after the injections i feel achy for a few hours. my legs use to hurt before i was diagnosed with ms. but now my thighs ache. my hand have felt swollen for about a week now. they dont look swollen but feel swollen in the joints. i took some ibuprofen and it helped.

~khris, you and a few other people really have gave me hope about rebif. being recently diagnosed and just going on what a doctor says is good for you with out knowing anything about the disease or medication is scary. i biggest worry is taking this medication dealing with all the side effects and then having a scan done to check the status of the ms and nothing being improved. i know thats a chance you have to take in life just like with anything else. but its my life and i cant help but think about my husband and kids.