Tips for a newbie

[floatingurboat]

I'm getting ready to start avonex and am wanting any tips you guys can throw at me that could make the process a bit easier. This whole starting a new med thing is daunting but I'm trying to compile as much information on the start process as possible so as to assuage any anxiety.. (as if that's ever worked for me in the past lol) Any tips you guys can send my way would be super helpful. Thanks in advance for any responses!

~Elly~

[KatW]

Hi Elly, I've only been on Avonex this year but I can give you my experience. I take it on Saturday right before bed. Sunday is my quiet day so I don't mind if I have some side effects. I make sure I take an Ibuprofen right after the injection and have one at the beside to take during the night. I also ice the area before the injection although I don't know if it is recommended. My flu like side effects have been off and on. They were quite strong at first and have since decreased.

Really, I don't mind the side effects compared with other DMDs I have been on. I like the once a week dosing. It is very convenient. I hope this helps and good luck with your new medication.

[TLC_31]

For a few years I tried to keep to a regular routine, which I’ll outline below. Nowadays I’m not so rigid; I shift days for various reasons (always 6-8 days since the last one) and inject at different times of day, and the timing of my acetaminophen (you may prefer ibuprofen, naproxen, etc.) varies as well. In time you’ll be comfortable mixing things up a bit. You may even want to shoot photos or video, as I’ve done.

My official routine involves removing the Avonex from the refrigerator late Friday afternoon, at least an hour before shot time. I take two acetaminophen at that point. After an hour not thinking about it, then find a place where you’re comfortable and warm, and won’t be distracted by kids, pets, TV, etc. Turn off the phone. Check the lighting beforehand; when I focused on the spot on my leg, it was always a little distracting to see the shadow of the needle approaching my skin, and I sometimes had to get up and adjust room lighting.

Get your alcohol wipe, gauze, bandage, and sharps container handy. Some people (such as KatW) use an icepack to numb the site, although I never have. It’s not a bad idea to gently hold the syringe in your hand or under your armpit to warm the Avonex closer to body temperature, but don’t use artificial heat. Make sure you’ve cleared your evening for relaxation time after the shot, but you’ll eventually find you don’t need to do that.

I then take two more acetaminophen right before bed (which means my first dose was ideally 4-6 hours before bed) so I have a better chance of getting through the night without waking up. Sometimes I need more acetaminophen the next morning. In my first months of injections, I usually needed it, and sometimes even a dose or two after that. I would suggest to newbies even one more premedication dose to get it built up in your system, because side effects can be nasty for the first couple of weeks. I didn’t titrate. Also stay hydrated, and you may want to avoid caffeine the day of and after the shot.

I originally chose Friday afternoons to minimize the effect of any side effects on my workweek. But if I have an important event on a Saturday, I’ll inject Saturday night. On a couple of occasions I’ve injected on Thursday night, Friday morning, even a couple of times on Monday and Tuesday nights. Last week was Saturday at noon, because my wife worked late Friday and Saturday nights and I didn’t want us to be just about passed out at injection time. I also don’t worry so much about the distractions anymore.

For years I rotated the six officially recommended spots like clockwork, with someone else doing the arms. I no longer self-inject, however, so I rotate the arms and each side of the backside. The people who have injected my backside (my wife and a couple of friends, see “Shot #301 of Avonex” on Youtube for an example) all have injected people professionally; don’t let someone back there that isn’t a pro or hasn’t had training from a pro. Do try to have someone trained to at least inject an arm or leg site when you're feeling sick or tired, whether from MS or something else.

You may be using the Avonex Pen, for which a couple of these suggestions may not apply. One thing that helped me for self-injections was the AvoGrip, which clips to the syringe after you’ve put the needle on. The Avonex people can ship one to you for free.

You’re fortunate to have resources such as MS World, which I didn’t have 10 years ago. Ask questions anytime!

[jroller]

Four months into Avonex

I have been fortunate to have a late in life diagnosis at 58. It all started with an emergency room visit due to trigeminal neuralgia, on the left side of my face, in the upper and lower jaw. Extremely and severely painful! Since the diagnosis July 2013, the creepy MRI and much prescribed medication, my doctor suggested Avonex. As usual, I too went thru all the emotional issues all of us have! Now 4 months into Avonex, using the pen, I can only tell ANYONE considering it, to TRY IT! I am off all other medications and I feel myself having so much more energy, cognitive state and I forget sometimes I even has MS, silly as that may sound. Oh, I also can work in my yard again and with my horse. The only thing is, when tired from pushing too hard I get clumsy and my mind can't work with my speaking. All in all, the side effects for me are very minor-chills and a little too awake to sleep the night I inject, but the next day I'm doing well. Good luck to all those thinking of Avonex and don't forget, your're not alone!

[andi b]

4 years on Avonex (wow how time flies)

At first I was religious about premedicating but now after many doses without any side effects I often completely forget to take an advil before hand.

I try to remove the pen from the fridge at least 4-6 hours before I inject but it has been as little as 1 hour before.

I guess my body has gotten used to it and I really don't notice any differences. At first I did notice a full/spacy feeling in my brain about an hour after, but not any more.

I do try to drink lots of fliuds the day of my shot.

[BigA]

Everyone is different, so you have to find your own way. I take it Saturday morning around 7:30. I go to the gym and have a regular day until about 3:00 when I lie down for a few hours. I'm able to dose the aleve while I'm awake according to my headache pain. Around 10pm, the fog lifts and I know shot day is over.

I was unable to sleep during the two times I took a shot before bed. If you're able to sleep through it, good for you. You'll get the hang of it.

[Justsayyes]

All good advise, I'll add a few tips. My first shot hit me with side effects about 6 hours later, and it was severe. Fever, shaking, chills, headache, joint aches particularly my back and knees. What a mess I was! Over time I discovered that I needed the extra help of 10 mg. prednisone several hours before my shot to ward off the worst side effects.

I also have used ibuprofen primarily early on, have learned that Aleve (naproxen) works better for me. I take two an hour before my shot and set my alarm to take another 4 hours later.

Avonex makes my heart race, and I do have some trouble sleeping on shot night. I take generic benedryl to help, and keep water bedside as Avonex dehydrates me.
Hydration is hugely beneficial, make sure you hydrate the morning after as well.

The needle that comes prepackaged is larger than most people need, I ask for 25 gauge (thinner) 1" (1/4" shorter) needles. Since using these, I hardly bruise and my fear of injecting is gone. I only do thighs, and have injected for ten years. My pharmacy is pushing the autoinject pen. If I were starting out, I'd probably use it.

A relaxed muscle is a happier muscle to inject. Wait at least ten minutes after wiping with alcohol or shot will sting. Jiggle the area and make sure that muscle is loose.

I used to baby myself after a shot and relax, have some chocolate, maybe a nap. These days I've learned that working that muscle helps to prevent any muscle pain that I used to get two days later. I now work out after doing my shot, or get on my exercise bike. I wish I had known this years ago...sigh....

I rotate shots this way, shots 1 and 3 on left thigh (odd number), shots 2 and 4 right thigh (even). Shots 1 and 2 top of thigh, shots 3 and 4 more laterally side of thigh.

Best of luck on your Avonex journey, it has worked well for me. Remember you can always change if you find it isn't working out for you.