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1176499 tn?1272680055

how long did it take to be comfortable w/ your injections?

I have been on Rebif for about 4-5 weeks now and am doing M,W,F injections and just started the 44mcg doses. Seems that each time I give an injection the experience is different. Sometimes it barely hurts and sometimes it stings soo bad going in. I am having a  really hard time with this and feel silly because I'm a nurse myself..but last wednesday it hurt so bad I had to sit there and cry...I did have some flu like side effects and  a headache at first but that has been eliminated by taking 1,000 mg of tylenol prior to the shot..I was just fine with this fridays shot..no symptoms thankfully..but I just was looking for some personal experiences of people taking these injections. I know maybe some day it will be second nature but how long does that take? I still have to really pysche myself up to push that button and I wanna cry every time..any thoughts appreciated..thanks!!!
18 Responses
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1176499 tn?1272680055
thanks so much for the comments..I am using the autoinjector and don't think there is ANY way I could do the shots w/out it..no way in Heck I could jab myself..I am already completely worked up about just pushing the auto-inject button every time..but it is getting a little better. I have gotten very good at the tummy shots and usually dont cry..lol..I never thought about asking for EMLA but I will inquire..that would be awesome..we use it for iv starts but never for injections where I work...I hope this feeling of dread does go away cuz its awful....It really does help me to know that others have been there where I am now..I do appreciate all the help! :)
Helpful - 0
Avatar universal
I am also an RN and have been on Rebif 44mcg for more than 3 years. If you are using the auto-ject, I suggest you try injecting without it. I usually take 2 extra strength tylenol and 2 alieve about 30 minutes before I inject. I self inject with the syringe and inject the medicine very slowly. 50% of the time it still stings. I have tried ice before and after and have also tried moist heat to the site before injecting. Nothing has really helped. Before I was put on Rebif, I was on Avonex. I had to stop the Avonex because of the flu symptoms and it just got to the point where I just couldn't give myself the IM injections anymore. I would just freeze up. I have no problems with flu symptoms on the Rebif. I give myself the injection just prior to going to bed at night on Mon, Wed, and Fri. I view the sting as a good kind of hurt, knowing that I am helping myself to stay well. Although there are times when I just want to quit taking it, I wouldn't want to risk stopping and then have the MS get worse. My last two MRIs have shown minimal new lesions and I have not had any worsening of my MS symptoms.
Helpful - 0
Avatar universal
QTPie
I am also a nurse. Started Copaxone 1.5 weeks ago. HATE IT!!! Not sure when I will get used to it. My shots BURN like the dickens for about 30-45 minutes after, swell up like a bee sting welt & I get a big red, warm spot about 3"x"5". That baby stays there all night. Ouch.
Then lets talk thighs....my entire leg hurts the next day when I do a thigh. I skip thighs on nights before I have to work.
Arm? No way...I'm not doing arms for gosh sakes if my entire leg hurts the next day!
Then there is my total PANIC at the thought I am going to have one of those instant reactions.
I just cancelled a big vaca because I was afraid to inject alone.

You aren't alone. I hear the stings, pain gets better with every type of injectable. I've told myself give this a year. Repeat my MRI. If I am still stinging, I'm switching to every other day.

Hang in there!
Helpful - 0
Avatar universal
I've been on Rebif since Sept 2009.
I don't use my arms at all;  thighs are a struggle for me, but I do use them.

I'm thin, and can't find much fat anywhere, but my butt & belly have enough to make the shots pretty painless.  I do spend a few minutes selecting the exact spot I'll use -- I stay away from stretch marks & veins I can see.  

For my thighs, I use the areas more to the outside & pretty high.
For my thighs only,  The Rebif folks suggested I use EMLA, which is a lidocaine numbing  cream. You have to apply the cream at least an hour before the shot. You pick your spot, put a dime-size dab of cream on it (don't rub it in), and cover it with saran wrap (just a small square).  Before you inject, wash off the cream.  It's not perfect, but it really helps -- it just numbs the small area where you put the cream, and wears off an hour or so after you remove the cream.

I also always use a heating pad (not too hot) to warm the injection sites before & after, and also use it to warm the syringe.  And try to remember, even when it hurts, the pain only lasts a few seconds.

It took me several months before I stopped dreading shot day.  Now it's mostly no big deal (except thighday, which I still hate a little).  For me, the dread & anxiety was the worst...   I should also say that my husband always is there with me when I inject, just for moral support.  I'm better doing the actual shot myself, but he'd do it if I asked...

Just remind yourself that you're at least doing SOMEthing against MS.
Thousands of us have had the same problems with injecting as you have, and miraculously we've made it through -- so keep the faith;  you'll get there too.
Helpful - 0
1176499 tn?1272680055
It has been a month since I wrote this and I still find myself struggling. I break down and cry usually one day out of 3 giving the injections. I cannot find the courage to do it in my arms at all..I did the thigh a few times and it Stung and bruised so badly that I am afraid to use the thighs also. So luckily Having a fat tummy is to my advantage for once..lol as there is plenty of fat to rotate..and I can also use the hips. I cannot trust anyone else to do it. anyone else have this problem? I have tried letting my husband do it..but when he gets near me with the injector I freak out and jump...Iam such a lunatic
Helpful - 0
Avatar universal
Hi Shell--  Good question.

I requested staying on 22 mcg Rebif, because I'm small, have a history of depression; I also have thyroid issues, which changed after 6 weeks on Rebif, and I take Lipitor, which can affect liver function (Liver tests so far are fine).  I also am a person who wants to take as little of any med as I can while maintaining effectiveness -- especially a med that can have serious side efx.

The fine print in the Rebif literature shows a small difference in efficacy between 22 & 44 mcg.

I asked my current neuro, his RNP, and my consult neuro at Mayo (whom I really liked), as well as the Rebif rep -- all say that many of their patients stay on the 22mcg and do fine.

None of the Rebif studies have taken into account weight, gender, or age, and my docs say they believe smaller folks like me can do fine with the smaller dose.  
(I'm female, diagnosed 7/09 at age 59;  height 5'-7, weight 120 lbs -- fairly fit, in pretty good shape.  Almost no fat, but not skeletal.)

Also, they'd all prefer to see a patient on the DMD, even at a lower dose, than to stop the drug because of side efx, etc.

Just had my 6-month exam yesterday -- no new symptoms or flares.

As long as I'm doing well, I'll stay at 22mcg.  If my status changes, I'll consider increasing the dose.  My next MRI is in June or July.  We'll see how that looks.

Any more questions, just ask!
Helpful - 0
198419 tn?1360242356
Q-Pie,
How are you making out?

MsMSinFL,
Noticed you are on 22's. Was there reasoning by your Dr. to put you on 22's vs. 44mgs? I'm curious because 44 is such the standard, but I've often wondered how many of us are on 22s, and more importantly info behind the decision...any info you have on that would love to hear.

thanks,
shell
  
Helpful - 0
Avatar universal
I've been on Rebif 22 mcg for 6 months.
I know the feeling of total despair right before the shot --It really does get easier!!  I will say that for the first 5 months, I wouldn't even look -- I closed my eyes when I pushed the "trigger" -- but now I realize that the discomfort only happens for a second or 2 when the meds actually exit the needle, and if I watch it, I'm ready for that moment, and realize how quickly it's over!

For me, Rebif isn't too big a deal any more.  For the first few months, the shot was pretty uncomfortable, but now I take the time to find the right spot, and do a few other things which help.

At my request, I've stayed on the 22mcg -- I'm female &  Biggest issue for me is that I'm thin, and really have to shop around for a fat pad to inject into.

I use the auto-injector, set at the next-to-shallowest depth setting (not much fat available).

Only feel discomfort on "thighday" -- and I don't use my arms.  
I'm very careful to rotate shot sites, and choose a spot with enough fat (belly & butt are best for me).   For thighs, higher & off to the outside is where I can find a little fat.
Never had the flu-like symptoms;  so far, no liver problems.  
On the thigh-days only, I apply Emla ( prescription lidocaine cream) an hour before injecting, which makes it tolerable.

I also take benadryl & Advil before injecting;  I warm the spot before & after, and massage gently after to move the meds around into the tissues.  I also warm the syringe before injecting.

I always get a painless red spot 2 days after injecting, and the spot can last 2 weeks or more -- but it helps me locate the last injection site, so I don't overuse the spot.

I sometimes can feel a burn (not too bad) when the meds go in for a second or 2, then no further discomfort.

Although it's a bummer to remember the 3x week shots, it's really not that big a deal any more.  Better than doing nothing.

Helpful - 0
211940 tn?1267881266
Yeah, my worst "after shot day" seems to me Tuesdays.  After all, I'm blessed not to be taking a shot on Saturday or Sunday, so the one I take on Monday's, I really pay for on Tuesdays.

I know it will get better, just waiting on, the "when".

Take care and God bless

-- Socrates
Helpful - 0
1149087 tn?1415316549
I totally understand what you mean, I'm in a very similar situation, I was also diagnosed rather quickly (over the course of ca. 6 months after a chance finding on a research scan) and it still doesn't seem to fit into my head or sink into my brain that I have MS. I had to tell my boss and work colleagues though because I had to take a lot of time off work- and I've decided to tell my close friends- I just think if we really are friends I don't want to have to keep something like that to myself- I would want to know if it was the other way around, too.
Take care and let us know how you go with your medication!
Rike
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198419 tn?1360242356
Hi there,

I'm a Rebif user and still get the sting on and off. Think it's the alcohol and or combo of the med stinging sometimes. I find too that sometimes skin is tougher than other times. Weird for sure.

You can always try the soap and water. Though weigh it out (being a nurse and all).

ttys,
shell
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211940 tn?1267881266
I have been on Rebif, since the middle of January, on my 8th or 9th week (don't remember exactly, without looking it up).

As directed, I give my shots in all 8 locations (thigh, stomach, back of upper arm, back hip).  My wife helps me with the shots in the back of the upper arm, and the shots in the back hips).  I have made sure to do the same progression, since I began, so I do not return to the same general area, until 7 shots later.

I found that the shots in the back of my upper arms, usually stung the most.

I was surprised when I began taking the shots, that I usually never felt a thing.
I still look to make sure the needle was ejected, because I don't feel it.

I, myself, take 1000 mg of ibuprofen, about 30 minutes before each shot.
However, I usually still feel bad (flu like) the next day.
I take my shots on Monday, Wednesday, and Friday (so my wife knows that Tuesday, Thursday, and Saturday, I will not feel well).

When I began taking Rebif, that night I felt strong flu like symptoms, even after taking the ibuprofen.  I do take them, at night, so if I can get to sleep it isn't that bad, at least for that night, the next day, I still don't feel well.

I, too, was told it will diminish over time, and I'm still waiting for that "time".

Also, I know for me, that I feel sensitive or tender, in the areas of my shots.
Especially, my stomach, my lower ribs ache, all the time.  I'm not sure that is a coincidence or not.

Know that you are not alone, we understand what you are going through and how you feel.

Take care and God bless,

-- Socrates
Helpful - 0
1176499 tn?1272680055
yes..I do find the abdomen is much easier and much less painful than the other sites. I hate to do my legs and have not yet brought myself to try the arms..cant find a good angle ..to everyone else thanks for the replies..more are welcome..and like rothexl said It is also the fact that "having MS is real"...I was diagnosed so quickly that it still kind of seems like a fairy tale and noone aside from family and close friends really knows and noone can tell so I feel like I suffer in silence alot and sometimes The i jections give me an excuse to cry I think..but it will get better
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667078 tn?1316000935
It became routine right away but I still do not like them almost a year in on copaxone.

Alex
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Avatar universal
I've been on Betaseron for about 19 months now, it did take a few months to become routine.

I must admit that sometimes I get a sinking "oh must do my injection tonight" feeling but I remind myself how lucky I am to be getting the DMD.

As for injection sites, my least favourite are my upper arms and thighs - probably because the other areas, stomach and buttock are much more well padded!

Good luck to all of you just starting out with the injections, it does become routine.

Mand
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Avatar universal
a day or two. so far not a big deal. a little rash, welts.  it will get easier i think. i can certainly see where a pill would be much nicer though! LOL
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1149087 tn?1415316549
hi, i'm at a similar stage having started rebif 3 weeks ago- and i have the same problem, for me it's mostly also the fact that i have to do it, that it shoves it into your face you've got ms.

my problem is that any site apart from the abdomen stings- i'd so like to just inject into my tummy each time but obviously that's not an option. do you also have that problem that it depends on the site you are using how well the injection goes?

i'm also hoping it will get routine soon- hope someone sees this who has been taking rebif for a longer time already!

i also found that the side effects became less to almost nonexistent quite quickly although i've been increasing the dose weekly.

good that your side effects went down- and fingers crossed you won't have troulbe with the shots anymore soon!

rike

hope you feel mo
Helpful - 0
572651 tn?1530999357
HI Cutie! I am on copaxone so I do this daily.  I know there are many Rebif users here and hopefully they can give you some insight.  

I know with me it took several months before the shots became routine.  I understand that it can take a good six months - give or take a few - to get your system regulated to these injections.  I hope for you it will be on the short end and it gets better soon.

Be well,
Lulu
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