rebif advice

[Ufrustrated2]

i start rebif tonite. does it need to be room temp like copaxone?

i do 8mcg for 2 weeks then 22mcg

yhx

[Ufrustrated2]

i would think the VA neuro will order the liver tests. i'll put it in my calendar to ask him next time i see him.

i take motrin at night now. i too hope it the symptoms never arrive! ;-)

thanks

[Magie43]

My flu like symptoms are really not that bad.  I have a few body aches and sometimes a headache all of the symptoms are gone by the morning.  

When I first started the shots I took the first 8mg, 22mg and 44mg in the morning so I could see what symptoms I would have.  With the 8 and 22 I did not take drugs and had no symptoms.  With the 44mg I took some motrin that morning but nothing after th

[Ufrustrated2]

i'm still on 8, will go to 22 soon. the 44's arrived today. i was thinking the 44 might bring on the flu-like symptoms, hope not, but that is a bit of a jump to 44.

[Ufrustrated2]

Stan,

well, those were the best descriptives i could locate in my head for the injection sites with copaxone. the knots, indents...?

[Mike_Shuswap]

I've never had bumps or indents (been on rebif for over 10 months), but I do get the red spots like Magie mentioned, mostly on my stomach.

I got the flu like symptoms right from the start at 8mcg, and I still get them at 44mcg  sometimes, although to a lesser degree. I took Tylenol extra strength before my shot last night, woke at 1:30 am and took 2 more Tylenol for headache and achy muscles, and had to take 2 more pills this morning when I got up.

Usually just the 2 Tylenol before I shoot up does the trick these days.

I'm glad you didn't feel any worse after your shot, hopefully you'll be one of those who don't have any side effects with rebif.

I can't recal if the importance of having your liver checked with a blood test for a while has been mentioned. I'm assuming you had to moniter your liver when you were on copax.

Anyway, I had to get a blood test monthly for the first 6 months, and now I get tested every 6 months.

Mike

[Magie43]

I don't have bumps or indents from rebif just red spots at the site of the injection that lasts for about two weeks.  The red spot normally for me show up 48 hours after the shot.  

Once in  a while I get bruises at the injection site but that is when I hit a blood vessel or a stretch mark.  I had to adjust my rebif injector to 2 arrows so the needle does not go in as far.

When I was on the 8mg and 22mg I never had flu like symptoms.  My flu like symptoms started when I went on the 44mg shots.  

I think the instructions that come with rebif says you can keep the shots a room temperature for 30 days anything longer the shots have to be refrigerated.

[socrates2k1]

What do you mean by, "bumps/indents"?

-- Socrates2k1 (aka Stan)

[Ufrustrated2]

OK, Shell & Mike, i'll rotate like i did on copaxone. only the back of the arms had some issues due to neeldle hitting muschle versus just skin.

Took first one last nite with motrin(600mg tab). no problem today.

since i've felt so "crappy-sluggish" for so long, i may not notice avg flu-like symptoms any ways! LOL

yep Mike, time sure flies on that slow treadmill but at least its moving a bit in the right direction. i honestly count my blessings though i have a tendency to be impatient.

does rebif leave those bumps/indents like copaxone?

thnks

[socrates2k1]

I've been taking Rebif, for over a year now.  I keep all needles in the fridge, and take one out the morning of my shot day.  I take 3 shots per week, on Monday, Wednesday, and Friday.  Since I have a problem with memory, if it's a "T" day (Tuesday/Thursday) or a "S" day (Saturday/Sunday), then I know I don't take a shot that day.  

I was also taught to rotate my shots, in this manner:  Right thigh, Right stomach, back of Right upper arm, back of Right hip, then back of Left hip, back of Left upper arm, Left stomach, and finally Left thigh, then begin the process again.

I have never heard of the rebismart multidose injector, myself.  I have a self injector, in which I insert the needle in, and push a button, and it pushes the needle for my injection for me.

One thing I have learned is, even though I do this rotation, and places like my thighs and stomach, have much larger "target areas" sometimes I hit a spot that may have a cal-is, for lack of a better word, and it does indeed cause minor pain, for the length of the injection only.  Sometimes I think, I need to make a template to lay over my thigh, to make sure I don't hit the same place, too often, but that sounds too drastic.

-- Socrates2k1 (aka Stan)

[Mike_Shuswap]

I agree with all before me, don't inject it if it's cold, room temp is the best.

Magie has a good point about taking out a weeks worth at a time. Because I use the rebismart multidose injecter this is not an issue, the machine holds a one week amount at a time (1 vial = 3x44mcg).

Like Shell said, you need to rotate your shots. I had to give up the arm shots, had pain that lasted for days, so I just do the stomach, thighs and belly.

Good luck with getting the rest of your tests. Time flies when your having fun, doesn't it?

Mike

[Magie43]

The lifelines nurse suggested that I take my three shots out of the refrigerator at the beginning of each week.  This has worked for me because I have a hard time remembering to take them out each day before I go to work.

Good luck and the only other advise I can give you is to take your shots at night and take motrin or tylenol before the shot.  I  have been on rebif for six months and everything seems to be going ok.  I forgot to take meds before the shot Sunday and I woke up at 2am with a headache and muscle pains took motrin and I was fine 20 minutes later.   My liver enzymes are elevated a little by the doctor said that is normal.  

[sllowe]

Hi Ufrus,

Definitely have it room temp before injecting. It's an acidic med, and injecting cold makes a burn a little. You may get the burn anyway, but least that minimizes it.
Are you doing your 1st w/the MS lifelines nurse? Mine was fab.

Also, if you get in a jam, need to inject, I put mine under my arm for a minute. Just be sure to not do anything like that for long - wouldn't be good to get the med too warm incase it changes anything up in it chemically.

That's just a suggestion. Rotation is a must. Lifelines teaches the STAR rotation. Stomach, thigh, arm, and rump. Rump is really your love handles. The stomach, and love handles are my best spots.

Good luck w/it, and please tell us how it goes.
-shell

[Ufrustrated2]

yep, that is what i'll do. package says refrigerate and to room tep like 30min prior.

do we need to hit different spots like we do on copaxone? i take this 3x a week so maybe not?

[Sumanadevii]

I was told to keep Rebif at room temperature.

[Ufrustrated2]

the change is due to copaxone has run its course i guess. that is, relapses are still coming, speech/word issues are still with me, and the "run over by a truck" symptoms were with me most of the winter.

VA neuro suggested i go with rebif. so i'll give it try

yes good to see you too.

ps: after almost a year since diagnosis, the VA got around to giving the exams for MS secondary issues and they still are fighting not to give me a VA exam for cog/speech/mem secondary issues. by the time they wrap this all up, another century will have passed.

[Lulu54]

I think it should.  It just makes sense that you want to inject something at room temp and not chilled.  I know copaxone has to be room temp.

Why the change?  Weren't you on copaxone?  

good to see you pop up here!
Lulu