Hi there. This is almost embarrassing, because after being on Rebif for the better part of a year, I should know this answer. Ive tried calling Lifelines, and they dont open again until the AM (at least there are no nurses there at this time) so I figured what the heck, Id put it out there to you all....

I remember, when I was trained to do injections, the nurse saying SOMETHING about the bubbles which are in the Rebif syringes. I have usually just self injected without removing them (tapping on the syringe); however LATELY the last 3 or 4 shots, have incredibly painful! I mean they burn like never before and they hurt while the medicine goes in...I asked a local friend, who is a nurse, who looked at the syringes and asked me "Should you be tapping out this large air bubble?" I honestly didnt have an answer for her...

So, here I am asking if anyone here knows FOR SURE what the answer to that is...And, admitting, that after donig this 3 times a week for almost a year, I cant believe that I cant remember..must be an MS thing!:p Many things which I should know, arent coming to me today....gotta be a combo of the MS and the heat!
anyway, thanks for letting me know, if anyone knows..
N

Nikki,

Be careful,thats how I got that site reaction sore.Couldn't get the air bubbles out and that whole month the shots hurt like heck,no matter where I injected.

GP says sometimes the preservatives can react like that.

Get a hold of MS lines tomorrow and ask them,is this a new box of shots?

The whole month of May my shots were extremely painful and I still have a sore that reminds me of that.I think the whole box had problems with it.

I'm a retired RN and was told to leave the air bubble in. You're injecting in the subqu. space so the air bubble helps to seal the med, less leakage after removing the needle.

I keep hearing about a new formula for Rebif with less sting and overall less injection site reactions. Wish they'd hurry up!

Nuffs and Classylady:
Nuffs, I KNEW I would hear from you on this, and was hoping I would! Thank you....Im inclined to lean towards your answer; however as CLASSYLADY said, Ive also been told to leave that air buble in there for the same reason. You know, last night, when I posted this, I couldnt remember FOR THE LIFE OF ME what the Rebif Nurse had told me..and this morning, when I woke up, I remembered exactly. DUH.:( I hate this disease.

Its incredibly hot here today, just under 100, highly unusual for NJ....with nothing but humidity...tonight, im going to hear an MS Society thing- and at this point, not looking forward to leaving my house. However, I am looking forward to hearing the talk.

Classylady- I hadnt heard about that new formula. Im going to investigate that. Thank you for giving me hope!

Nuffs, I do know its this box....and yes, it is a new box. I wonder if there is anything I can do at all...I guesss Ill be calling LIfelines once again to verify.

Thank you both for writing back to me.
Hugs,
Nikki

Nuffs, how are you? I havent heard much from you this past 10 days....I figured you needed some down time and that you would surface when you were ready...you feeling any better?
Nikki

Hi everyone. Just wanted to let you know, I just got off the phone with the MSLIfelines nurse....first of all, she confirmed that there is another version of Rebif coming out, however it isnt expected out until sometime in 2008- she didnt know much about it...secondly, she confirmed that the bubbles should be kept in the syringe....according to her, by tapping them out, medicine is likely to get on the outside of the needle, both confirming the burn/pain as well as a site injection possiblity. She suggested (Nuffs) that I try going back to the auto-injector and setting it at 2...I dont know, think I tried that, but she confirmed that self injecting, is the same as putting the auto-injector at 3, or 10 mms. Im so confused!:(
Maybe Ill try it for a week, see what happens...
Hope all is well, and just wanted to pass this along in case anyone else was wondering..
Nikki

Nikki,

Been reading post,having hard time with bilateral peripherial visual loss and typing gets difficult plus add some double vision.

I hate this flippin disease and the steroids have been just an added bigger pain in my back side.I still have 16 days left on the taper down.

I have seen no added benifits from this last round of solu-medrol and its been a month.

My physical therapist is a real jerk,she Knows crap about MS and I'm about to educate her the old fashion way.She made a comment on me being 41 and getting up their in age.I'm like what the heck.She didn't realize that spasticity and the spasms were a symptom of MS,let alone myoclonus.I'm sinking in this ship real quick with this therapist.

I have been keeping really busy,missing my daughter,I have received letters and I have to write her in the morning.

My son just re- built my front porch,since I fell through a floor board.He has the garage all most finished wood siding it,so I've been kinda keeping him company.

They demolished the back shed,which wasn't to happen,they were to move it to the other side of the yard and something went wrong and the whole thing colapsed so I have been cleaning that up,plus cutting up the wood.Hubby would leave it lay.

Yes,its been to hot a 102 here.Cooling vest works great.I was out for a while,trying to fill in the back yard ,so many holes and I fall all the time out there.

Sorry to ramble,

For the rebif,yes the incert states air bubble is to stay.I only self inject legs ,auti- inject stomache on 2. I know when I self-inject I'm just below the skin,my bi-focals tell me so.If I auto-inject my legs they bruise,self inject they don't.

I honestly think that its the script its self.I get my med from caremark,see if they can help.I'll tell after that box of shots I have to take all my night time meds wait about 45 minutes,then inject.After the cite sores and the pain,I could of chucked the whole injection meds and let this disease do it's own thing.

I quess I'm kinda down,this relapse hasn't diminished and I don't see the progression slowing either.This darn disease won't leave my legs alone,I can be walking and get a muscle spasm that could drop a horse and they have me back on all the previous meds,that I had tapered off of.

I'm not giving in or up,still going to the fitness center every morning with my son,except on the weekends and I stay on my legs as much as I can.I have really suffered insomonia with this round of steroids,I am only getting about 3 and a half hours of sleep a night and a cat nap on the afternoon.I think that is creating some of the leg problems.

This is why I've only responded to a couple of post, visual, I'm discouraged,I'm over medicated and don't want to give anyone negative advice.

Please get that rebif worked out and please watch for sores!!! They are painful.

Let me know what ya here back

Hi Toni.
Sorry to hear you are doing so bad this week. You sound really bummed. Please know that this too, will pass.....ok?
ITs the streroids doing it to you...we both know that. You really are overmedicated at this point..any chance of you getting him to taper faster? Like in doing full mg, instead of 1/2 mg a day? You need to get off this stuff, and its going to stay in your system for quite some time...

meanwhile, went to an MS talk last night, where my MS SPecialist was speaking..I did ask him and his nurse about the meds..they both agreed, bubbles stay in...also, spoke at length to Serano on the phone, they said no problem with the box, or lot number...which I guess cant really be confirmed, but they said ok to keep using it..
I get mine from Curascript- not Caremark, because of my insurance requirements, however Curascript told me unless the company recalls it, or faxes them a letter, there is nothing they can do...Serano told me to try heat, instead of ice...yeah right. Me and Heat dont get along well these days...but, Ill try it on my tummy tonight....did you say you are using the auto-injector on your tummy?? Just not your legs, right?

As for your therapy...keep doing it. I would give anything to have therapy for my hands these days...my insurance wants 30$ a visit co-pay and I have to drive 45 minutes to get there....I cant do it, not right now, we are broke. Wishing I never got this car, which sits in the garage 99% of the time..I think it has 500 miles on it now..and thats becasue mom lives in Phllly, an hour drive, and about 45 miles each way....weve taken it there, twice. OTher than that, we dont drive this thing....

I have to run, working today...just know IM thinking of you...
hugs,
Nikki

Nikki,

How did the shot go? Yes,I auto inject in the Tummy and self inject in the legs.I'm telling ya that it was the shots!!!!!I looked at my new box of shots and they have no bubbles!!!!But the few That I do have from the May box were filled with bubbles.That monthly dose hurt like the dickens and it left me one opened painful sore,so you be carefull.

I taper down to 40 mgs of prednisone tomorrow,this is just whipping my butt.Plus back on all the previous meds and I'm suffering from terrible insomnia.And this darn HEAT!!!!!It isn't helping anything.

I'm gonna continue therapy my insurance covers every penny so its definately worth doing,but the therapist is not very well educated in MS.When she tried to tell me that spacticity didn't go hand in hand with MS and it wasn't a symptom of MS,I wanted to ring her neck.

I tried to explain that when I had an attack years ago,the spasms never went away and after each attack it comes back with avengence and reattacks my legs,my knee joints ache so bad.

Plus I have been going to the fitness center with my son, I am making a slow progress and it gives me an out.I was able to lift 44 pounds with my legs,not much ,but better than when I started,I could only do 11 pounds .I have been walking the tread mill I hang on for dear life as I'm afraid to be plastered against the wall ,zoom there I go.

I honestly don't think this attack has left,I have this sensation that I am wearing long socks up to my knee's.I will wake up at night and will be trying to take socks off that I don't even have on.It's driving me bonkers.

I ain't calling my neuro,my luck he'll up the steroids and I want them done with!!!!!!

Hope you had a good work day.I'm gonna go and putts around in the yard,it just rained,2 inches,we have not had rain in all most a month.it's to be 91 out there,but I need to get my mulch down to keep the dog out of the dirt.

We'll be sending you cooler weather,only 75 here tomorrow.YEA!!!!!!!!!!

I'm just in a rut right now and I know the steroids have caused it.2 much in a short time period. But the PLUS side to all this is I have quit smoking its been 11 days (2 paks a day) to 0. New med out there Chantix.Blocks the neuro transmiters for nicotine.So this has been good so far.Its a 90 day script and only have 79 more to go.It seems like its the only positive thing health wise that is going right.And with being on the steroids and not smoking it will help heal the lungs and open the broncial tubes and all that good crap.

Off to the garage.

You take care and stay cool.

Congrats on the stop smoking.

I was at a MS Support Meeting last night and a Rebif rep was there. She said that the new version is to come out this fall maybe Sept. It will cause less site problems.

Having a new car and not using it is the pitts.

Prayers....Marsha

Marsha,

Is it PILL form (LOL) I'm tired of site reactions.

Becoming a non-smoker was extremely hard,but its going good so far and I don't miss them after 23 years.I finally can get air in the bottom of my lungs.

I agree having a new car and not being able to drive it is the pitts,plus the payments.

Nikki , I have a 4 year old Dodge pick-up with 25,0000 miles on it.Tells ya how little I drive it.And I hate the payment.

Hi all, Nuffs, good job on the stopping smoking! No, the pill form isnt due out until late 2009....so they said last night..
Long freaking day, Ive been out in 99 degree heat since 7:30 this morning, so this isnt going to be a long one...about to go do my shot, havent done it yet and should have done it two hours ago, but I just got home.
Ill catch up with you later..
Nik

Crap I was hoping it was pill form, I hate those shots.

I hope yours goes well tonight.

I'm sending ya cooler weather,it was 100 + yesterday.Today cooler.

Just checking in before I pass out for the night. SHOT HURT. It was in my belly, which is always the soarest spot..however, once again, it burned like crazy. I dont know. I self injected, was too upset to get out the autoinjector and try that again...maybe on Thursday. ITs been a long freaking day.

CHeck this out...I go outside (for a smoke) right after I wrote you before, there is a baby bird (appears to be a Robin) on my steps..its about 3 weeks old..small, but not tiny..feathers, but still downy feathers on its head..and its looking totally dehydrated. I get out the eye dropper I use for my cat and gave it some water...I watched it for an hour...no mother bird. I finally went inside, and all the sudden I hear all this commotion...mommy bird is calling baby bird,,,and guess what? Baby bird speaks! IT didnt chirp while I was out there..mommy found baby, baby cant fly...mommy fed it something out of its mouth (I can only imagine) and now baby bird is on my front steps, cowering behind my husbands timberland work boots- and I guesss its camping out for the night. I dont want to move it...mommy knows where it is...but mommy is no where in site again..(perhaps taking care of the smart babies who didnt try to fly before they were able?) and hopefully the neighborhood cats and we have foxes here too, wont get it...
Hoping I dont wake up to a "missing' baby bird..or worse yet, feathers.

It was 100 today exactly...it hasnt rained yet..and Ive had it with this weather...they are saying Thursday, in the low 80s...cant wait, but tomororw is questionable...the rain keeps missing us! Its rained all around us, but all its doing here is raising the humidity..right now, its almost 10 pm and 92 degrees here...yuck.
Talk to you tomororw.
Hugs,
N

Nuff
Reading about the rough days you been having. Hope you are feeling better and like I said, I am really proud of you. I think it would be tough to stop smoking and with all your going thru.

Nik
Hope the baby bird makes it, the site pain stops, and you sleep like a log.

And both of you need to make a nice day trip and put some miles on your cars.

Marsha

Nikki,

Are you getting bad site reaction after your shots.I was told heat then ice.Heck I just prayed and still got a nasty sore.

Smoke one for me!!!!!

I hope a kitty or a fox doesn't get the baby bird.I had to take a mamma cat and 5 itty bitty kitties to the animal shelter because mamma cat was putting them under my truck,I was afraid of running them over.Stupid Cat.

I had to quit smoking,it was taking a toll on my lungs and it was costing me to much.The med chantix has done wonders for me.I quess it was one of my smarter decision here lately.But I was ready this time.

Off to bed for me busy day tomorrow,fitness center at 7 am,drop off my daughter at cross country camp,go to the bank,PT and chiro appointment.

Hi Marsha.
Just checkd on baby bird, hes sleeping like, well- a baby! Mama is no where in site...told my husband if the bird doesnt make it, please dont tell me...let me think it flew away! I dont want to know..its very sad going to bed with a baby bird outside my window, wondering what is going to happen to it.
Meanwhile, youre right about the car! I need to drive it..too bad I just dont have the energy...we'll blame that on MS.
Thanks for being so kind. Its nice to read a kind post tonight.
Hugs,
Nikki

Nikki,

Ya need to drive that car!!!

How was that baby bird this morning?

I went to PT,it didn't go very well today,had terrible spasms all night and had a difficult time walking.I'm getting so frustrated as I was doing well until this last dose of steroids and darn they just zapped my leg muscles.

When I was researching solu-medrol side effects,the second side effect was rapid muscle loss.Then the added spasticity,which causes muscle loss when it flairs up.I truelly feel that I'm slowly losing this battle with my legs regardless of the preventions I've taken.Going to PT,the fitness center,quit smoking,I take their synthetic meds to lesson the spasms(while poluting my liver)I'm even taking the quinine that cause me to have severe ringing in my ears.

Today at PT I had lost my balance several times,I tried to explain that with the all night spasms,that my balance was really off plus I was dealing with some dizziness today,the therapist is real nice but has very little knowledge on MS.Heck maybe I was just over medicated,had to take pain meds all night for releif.

How did your shot go last night?

Mines tonight.

I am gonna taper off the prednisone the next few days and see what happens.By the time I'm done if I follow the DRs orders it'll be 45 days of steroids and in April-march I was on them 30 day taper up --5 days infusion and 40 day taper off.Then come June 5 day infusion and 45 day taper off.This is just really tearing my immune system apart.And they will stay with me for how long.I told my family members no more steroids for a long time .

Sorry to vent ,I think I'm past the point of frustration!!!!!!

I hope you had a good day today

The new formula of Rebif is incredible! I took my first injection last night and no "bee sting" or injection site brusing the next day. I'm taking part in a 2 year study that includes the new formula. I know that they are still looking for more people to participate. If you are interested go to:

http://clinicaltrials.gov/ct/show/NCT00436826;jsessionid=8CB8327718D36EAAE D45ABFA71DF1791?order=14

Nuffs, sorry to hear you arent feeling great, im not either, which is why I havent been online much....seems every time I open my mouth right now, I put my foot in it...
for anyone who is interested, baby bird didnt make it...it died last night...
As for the info on the new Rebif formula...HORRAY! Im excited to hear about it, and SNOWCATCO, thank you for sharing that with us.....

Nuffs, I really hope today is better for you. Would you believe it STILL Hasnt rained here, its slightly cooler today, in the mid 80s, but its still so humid...most of the state got rain last night, but none in my county....its been horrible...as for the car, yup, I should drive it, and I will drive it, eventually...my legs are so crampy this week that I dont want to drive anywhere, once I get home from work...
I hope you are doing better....I cant even get up the energy to exercise this week. I dont know how you are doing PT, Going to the gym, etc. GOOD For you. Im envious that you are doing "the right thing". By the way, the stopping smoking...did you take anything? Honestly, I find myself smoking more and more right now, probably because I feel so awful..
Hugs to you.....
Nikki

Nikki,

Sorry to hear about the baby bird!!!

To stop smoking I am taking the med Chantix.Its fairly new and so far so good.No smokes in almost 2 weeks.I was smoking to much ,symptoms got worse,so I smoked more.Now how stupid was that.

I started going to the fitness center because of the loss of muscle,I know that the steroids induced it.Now it will take months to rebuild it.PT is a joke but I tolerate it to pacify my neuro.How in the H*** can ya have balance if ya have lost so much muscle mass.Dumb butts.

I hate wearing shorts because my legs are nothing but bone,there isn't no meat on them.But working on that.

I can understand the crampy legs.Mine have not seemed to rest since the solu-medrol infusions.They buzz and tingle constantly.

I don't have much of a choice but to do PT and go to the gym,I refuse to let this disease do me in.I need my legs.

As for the energy must be the roids still on taper down.i'm still suffering from some insomnia,but it is lessoning and now I do get fatigued during the day and must take a nap,maybe 2 little ones.

Yesterday I worked out at the gym and then to PT.I didn't think I was gonna be able to drive home had to sit and wait for about 20 minutes to collect my bearings.That kinda of scared the crap out of me.

Honestly I have found that the chantix has helped quite abit,but its like anything ya gotta be ready for it and have the want to do it.I quit during a stressful time period,right after my daughter left for the Navy,if I can do it now ,I should of been able to do it a long time ago,but apparently I wasn't ready.Its my gift to her when I see her at the end of August.She hated me smoking.With the chantix I have no urge.It blocks the neuro transmitters,it puts no nicotine in your system.I tried the patches,the gum,cold turkey nithing was effective.It only takes 3 days to be nicotine free,all the rest is the cravings.I have no cravings,not even when someone comes in and smokes.

With the MS and it not lessoning,the smoking to much was just making me more miserable and it was getting expensive.Heck I have smoked for 23 years more than half my life.

Get some rest,hope ya get to feeling better.I think we got hit by a summer relapse,crappy roids and this darn heat and it happened all at once.

Nuffs,
Not going to type much, but wanted you to know, I did Chantix about 4 months ago...so did my husband, and my brotherinlaw. I had cravings right into the second month...and nothing made them go away. My husband and brotherinlaw both quit in month 2, however discontinued using the pills after 3 months and both are smoking more than ever....I couldnt afford to keep buying it. It ran me $105 per month and after 2 months of both of us taking it, there was no more availble cash.
Congrats...obviously you are stronger than any of us were...having spoken to several people who have used it, other than all of us having "gas" more than often....no one I know quit entirely on the stuff. I wish you well, and whatever you do, dont stop getting the script filled unil you are POSTITIVE you can handle it.
Im having a though time tonight...between the bird dying this morning, a rotten day at work, and an overall crappy day...well, Im ready for bed.
I do appreciate you sharing with me all about your gym, PT and your strong feelings on staying strong. You are in my prayers every night that you find some physical relief from the steroids and that your legs gain from this exercise....Ton, your my inspiration....truly. I couldnt get thru my days without you . Thank you,
Hugs to you....
Nikki

Nikki,

Did you completely quit smoking with chantix?I have a friend that it hasn't phased her.She still smokes just as much.

I only take half a pill in the morning and the other half in the evening.As in my GP is worried about my insulin levels as where they are high anyways do to the roids,chantix will also raise the sugar levels.

Plus all the other meds I'm currently taking.

I have full intentions of beating any cravings down the road.I gotta have something right with my health and that was the place to start.My copay was only 2 dollars so it was worth the try.I will stay with it until I feel confident that I can do it solo.

Joining the fitness center was great incentive also.
Now I save my cig. money and putting it into landscaping the backyard.Something for me!!!

Thank you for putting me in your prayers,

I look at this way its just one nasty relapse that will leave eventually and I can't let it get me down,gotta keep moving and a groving.

You get some rest and I pray you get your releif and a nicer BOSS.

Hi Nuffs..
I didnt completely quit- I wanted to, and I tried but then something would happen and Id start or pick up one cigarette...and that was that. Honest to God, the cravings NEVER stopped. I would lay in bed and do everything NOT to get up to go have a ciagrette, but it didnt work. I figured it I was only having one in the AM and one at night, after dinner...it would eventually stop, but it didnt> I could have smoked a pack a day on Chantix...it had no effect on me at all. Figures.

Meanwhile, Im exhuasted today and about to go to work to a very important meeting. Im not going to be around much this weekend, so if you dont hear from me, Ill check in when I can. We have a huge weekend planned with the kids...running all over the place. Today, is the first day that it is in the low 80s praying it doesnt get hotter...we still have not had any rain in my area for almost 10 days...its gross outside!
I made up my mind that starting Monday, I start working out again. I was doing so well until my relapse..im starting again. At 6:30 every morning, IM getting up to work out, no matter what....wish me luck!
Have a good weekend, and stay strong.
Nikki

Nikki,

Sorry that the chantix didn't work.

My physical therapist is a moron and I mean that in a nice way.She refuses to stretch my legs.I always leave in so much pain and fatigued.

She's gonna send an update to my Muscular DR.Yea!!! Well she isn't gonna be happy that they are not stretching my muscles first.

Sounds like your gonna have a busy weekend.Me I'm gonna get my youngest packed and ready to go to pennsylvania,she's going camping with some friends next week.It'll just be me and my son and between his working and football practices,I'll be lonely.

Goodluck on working out,just start slow.I went real quick to the gym,done easy workout,leg machine and arms only 11 pounds (I know light weight) 3 reps of 10 and rode the bike for 12 minutes and bull crapped for a few and was out of there.Had to get my hair cut.

Just go at your own pace.

Have fun this weekend.