New avonex Pen

[rendean]

How many of you using Avonex, never injected yourself but had help from family members? Also, what is your opinion of the new pen?

Thank you for your comments,
ren

[LoriC2]

I started using the injection pen since it came out.  The past 6 months I have had a horrible time getting the pen to release.  I actually had a batch(3 boxes) that worked.  The following batches have been bad again.  It has gotten to the point that I work up such anxiety that I can't do it and skip it. I called Avonex last time and they replaced the batch. The ones they sent me worked beautiful. Now I just received a new batch from my med provider and they are bad.  I even compared the old pens to the new ones and you can't tell by looking at them.  Now I am afraid to call Avonex again (it took me 3 weeks, and several phone calls to get them to replace the pens. Anyone else have this problem and if so, what have you done other that "dealing" with it because I just can't deal with it.

[beboqueen]

I'm not liking the new pen, I'm only using it because the smaller needle speaks to me more,  I find it dificult to activate and find the pressure of pushing it In to my leg more painful that the needle it's self , I have now taken a strange reaction where I was in agony a week later on injection sight followed by a huge hollow dent spearing on now the side of both legs , my doc flagged up a yellow card as did ms nurse , I've since has biotec on the phone to me , I'm finding it very dificult to continue and have been advised as new pen is only licensed to be used on side of thigh I should go back to the old injector pen x

[twopack]

Could the cap be getting loose as you twist the needle on?
Maybe you can just point it away from you and allow the cap to fall away as you slide the barrel shaft into place.  Would it matter then if the cap came off early?

I bet this won't be a problem when you are comfortable with the equipment and the 'fumble factor' diminishes.  I'd still check with the training nurse though.  A phone call could very well be all that is needed for a person who is familiar with the equipment.

Any tips Sidesteps?

[jibjen]

Hi there...


I can get the needle secure but the cap is flimsy..or so it seems. so when I am ready to slide the cover over the cap comes off before it should which is not good....maybe IT IS ME but I beleive I am doing everything right...HMMMMM...will keep trying :O)


Jibs

[twopack]

Need to make a correction I believe.  It looks like Avonex is actually only 0.5ml per injection.  That's good news!

I'm wondering it someone can tell me the size (gauge) and length of the needle used with the Avonex pen.  Advertising says the needle is only half as long as it was with manual injections.  Was that one an inch and a half?  Thanks.

Ouch Jibs!  I watched the animated video (the one "not for instructional purposes").  I'm not quite sure what part is giving you trouble.  Are you unable to tighten the hub onto the syringe?  Or is the problem with the barrel part that pushes the needle cover off?

Not sure I can help here but your injection nurse should be able to.  There are always questions when new products are introduced.  I noticed the promo stated that during testing (or trials) a large percentage of new users encountered no difficulty with the instructions or adjusting to the pen.  Real life and larger numbers of users in the after market usually tell a different story.  Makers of the pen need to know where the problems are with both instructions and product.  Let them know - then tell us what you find out, please :)

[jibjen]

hey all,

I have to add something....I have been having a problem with the needles on the avonex pen and last shot was the worst...when attaching the needle to the pen you should be able to attach and twist to toghten, and thenyou pull the shaft over to take cover off the needle prior to injection.

My caps always come off and I fumble and last week I stuck my hand with needle..I am beginning to think I liked my syringes better!

Jibs

[Sidesteps]

I agree TwoPack, my thought process is more in line with (as long as it is holding my disease activity to a acceptable level) going back to self injecting rather than "risking" a new oral medication.

I did inject in the approved area and it was much better today - I just need to get over the psychological hump from the last several injections being rather painful with severe bruising. I remain hopeful. :)

[twopack]

I'm a Copaxone user but I think I'd go back to manual injections of a known product before I'd count on the release of a new oral DMD to solve auto-inject problems.

Bruising doesn't cause scarring or atrophy.  Subcutaneous injections of DMDs result in more frequent site reactions because 1ml is the maximum volume subq tissue can handle in a single injection.  Also, those medications are designed to be absorbed more slowly and remain in contact with the tissues longer.

Avonex injects 1ml of drug too but a muscle can usually handle twice that volume (or more) and is designed for the faster absorption muscles allow.  Put a muscle to use and the drug can be dispersed into the circulation even faster.  At any rate, since Avonex is a weekly injection I would think even eight sites would allow for sufficient healing between one use and the next.

Keep in mind that no testing scenario comes close to the trial that begins AFTER a drug is approved for widespread use.  More and more often we hear that good looking drugs appear less attractive once they hit the open market.  That doesn't mean they're recalled.  It doesn't mean they're bad.  They just aren't all that and a bag of chips - for everybody - as we had hoped.

If I was just now being diagnosed I think I'd be looking for a DMD with the best chance (best proven track record) to control the disease.  I'm a tried and true kind of person trying to be neither the first to embrace a foolish idea nor the last to refuse a proven miracle.

[Sidesteps]

BG12 is the new oral DMD coming out later this year or early next.  Depending on how well this works for me, I may or may not switch. I am still pretty active in my disease activity. We will see ~

[tammy197238]

sorry its not working for you.  Like I said..I have only had 4 injections but have not had any problems with those 4.  I have only used the sides of my legs.  I used to bruise badly on the tops of my thighs with the regular needles.  I had some some that were just terrible.  

I cant believe the nurse didnt instruct you better than that. I had a really nice informative nurse.  But I know when i called after I got avonex pen they said the nurses were very busy sine the pen came out having to train patients.  The lady from avonex line I was talking to told me I didnt have to have the training if I didnt want to.  There was no way I was going to do it without the training though!  Hope your situtation improves.  

Whats BG12?  

[Sidesteps]

Oops - 16 (not 32) I can't add. lol

[Sidesteps]

Tammy, I have used the pen outside of the recommended area without realizing. I had a nurse come out and I even shot on the top of my thigh. She said nothing. At this point though, I have had enough shots to experience the sides of my thighs and tops with the pen and I feel it's still harder on my legs.

If you only have 8 places to inject vs 32, well, my concern is the bruising will cause scar tissue. I am getting bruising and pain in all locations. It is totally unpredictable but definitely worse on the tops of my thighs. I will give this more time but I think I'll be switching to BG12 if this doesn't iron out quickly.

[tammy197238]

I have used the pen for a month now and I like it alot better than old way.  I havent bruised and I dont even feel it.  The nurse who trained me told me it was only fda approved for the upper outer thigh area.  Is this where everyonen else has been injecting it?   I love it.  Im still getting used to doing it myself since my husband gave me the injections when I used the syringe.  I count to 3 and then chicken out on pushing the button...but 3 4x I have used the pen there has been no pain so I need to just do it and stop being a baby.  

[jibjen]

I have switched to the pen and as sidesteps has mentioned I am bruising more and it seems to be more painful to me. I do not need any help from family, nor did I when I was using the syringe..I do not ice the area as I did with other method of injection but they say you do not have to.

I too thought it would be a breeze as opposed to other method, although I was quite use to syringe process.

I inject on Mondays so I will let you know how tonight goes. I keep telling myself practice makes perfect..

LOL

we will see..
JibJen

[Sidesteps]

TLC - it's really 'hit and miss' - it seems that some areas are more prone to issues. My injection last night was uneventful (no bleeding, marks or pain) but that is not been my most common experience. It's not horrible, just not as *fabulous* as I thought. I expected the same results as self injecting but better...that hasn't been my experience. :(

[TLC_31]

For the first seven years or so I self-injected on roughly two-thirds of the shots. Now I haven't self-injected since last September, and that was the only self-injection since last July. I don't think I could ever do it again, and I would ask for the Pen if I lost my primary caregiver (which isn't likely). I've seen rave reviews elsewhere, and I'm surprised and sorry that it isn't working well for Sidesteps.

[Sidesteps]

I didn't have the same issues with self injecting, I can switch,  but I struggle with some pausing before I inject myself. It's a hurdle I haven't overcome but I can avoid that with the auto-injector. I will stick with it and see if I can get "better" results with time... I don't expect any of this to be easy or perfect.

[rendean]

bump

[rendean]

I'm sorry to hear about the pen being more painful. Can you switch  back to self-inject? Or was it the same situation?

I remember the days when I used to inject copaxone, the stinging and the welts are still fresh in my mind a year later.

Wishing  you the best until BG12 comes out,
Ren

[Sidesteps]

I am not crazy about the new pen - its more painful and seems to be bruising more. I am getting scabs too since I am bleeding more with the shots. I hate injecting myself though so I will deal with it until BG12 comes out (though I am not convinced that's the direction for me either since I have NO side affects with Avonex.)