New to MS and Avonex

[PrissyJayne]

Hey Everyone. I'm newly diagnosed with MS and Avonex is my first treatment option.

I just finished titration and injected my first APen. I honestly don't know if I can do this. I'll try to explain without sounding like a complete baby.

My husband is stationed in Korea for a year (yes, I'm doing this alone) and I'm raising our two kids, ages 8 and 5, and I also work full-time. If that's not enough, just today I signed paperwork to withdraw from school where I was studying Finance because I couldn't keep up.

I am seriously affected by the side effects of Avonex. My flu-like symptoms last 24-26 hours and they are intense!! No matter how much I hydrate before, during, and after, I feel like I'm about to die. My body hurts from the top of my head to the last joint in my toes. I get a severe headache. I shiver. This last injection was brutal!! I take it around 6pm to try to sleep through the worst of it. This time the aches woke me up, I would cry and stretch until I wore myself out, sleep for 45-60 minutes until the pain woke me up again, and I would cry myself to sleep again. I feel like I have a vice grip on my temples.

I discussed this with my neurologist (who I haven't seen since diagnosis in February) yesterday and she urged me to stick with Avonex. She asked me to give it 6-8 months!! Here I am, basically losing an entire day a week while acting as a single parent and working full-time. Does it get better?

I guess I'm just looking for someone to tell me they've had a similar experience or tell me that it gets better or something!! My neurologist gave me a RX for Naproxen CR and said that should help. If not, I don't know how long I can continue on Avonex.

[TLC_31]

When I started in April 2004, we didn’t discuss titration. The first injection, I woke in the night much as you did. The next couple of weeks, it was almost as bad. And I was pretty lethargic and achy on Saturdays for several weeks (I injected Fridays exclusively for a long time). I remember an event in late June 2004 when someone asked how I was feeling, and I remember saying even then that the medicine made me feel worse than the disease.

It did get better for me, however, and I’m still taking it nine years later. I take a couple doses of acetaminophen on shot night, sometimes another dose the next morning. I think my experience is common; side effects are more serious early in treatment.

I’ll add that after a seven week break from Avonex in November 2011, the first shot back came with nasty side effects, almost as bad as that first shot years ago. But it was only a couple weeks to be back to normal. And yes, I’ve had other not-so-great days, but I’m not afraid to schedule things for the day after injections, and I’m not afraid to move my injection day when needed.

I’m sorry you went through severe side effects, and we can’t guarantee you won’t have further such reactions, but I have faith they will be less intrusive in the near future.

None of the disease-modifying drugs are free of side effects, but ultimately they are minor compared to a relapse, so stick with them!

[MSer102]

Back in 2000 when I started on Avonex there was no titration. We mixed the solution ourselves and manually injected the full dose and just dealt with the side effects. It seems that for most people the worst of the side effects pass in a couple of months even at the full dose. Your side effects sound extra brutal especially if you've already titrated up.

If your neuro just gave you naproxen it sounds like you haven't been taking a fever reducer like Advil or Aleve or Tylenol before and after your injections. That seems to be the secret in getting around the side effects with Avonex. It seems like your neuro should have told you about that from day 1. So its really worth trying the naproxen before you give up on Avonex.

I know a lot of people say to be sure to stay hydrated with Avonex but for me that didn't make any difference if I did or didn't. The answer for me was Advil or ibuprofen before and after injecting.

If you still have terrible side effects even after after premedicating then Avonex just might not be the medicine for you. I think its better for you to switch to a medicine you'll actually use instead of trying to stay with one that makes you so miserable your going to quit.

All of the DMD's have side effects. The more effective the medicine is the more serious some of the possible side effects can be. You could try changing to one of the newer oral medicines. There are different possible side effects but so far they don't seem to be the flu-like kind that can make you miserable every day at least not for most people. The only way to know is to try one.

If you don't have the JC virus you might go on Tysabri. There are pros and cons about it so you might want to read up on it and then talk to your neuro about it.

Rebif is the same medicine as Avonex and Betaseron is also an interferon so you might have the same trouble with them. Copaxone doesn't have the flu-like side effects and a lot of people like it a lot. Its still an injectible and a lot of people can't tolerate the skin reactions.

A big drawback to Copaxone is something called an immediate post injection reaction. You can read about it. Some people never have one (I never did) and some people have it many times before they finally give up on Copaxone. I was sitting next to another person with MS at an infusion center who told me he had one IPIR a month for 5 months so he had to stop Copaxone. An IPIR can look and feel like your dying so it sounds like it would be a bad thing to happen in front of your kids.

So it sounds like if the naproxen doesn't help then it might be time to tell you neuro that your going to quit taking it so she might as well just go ahead and prescribe a different DMD right then. Good luck with the premedicating. And remember that you don't have to keep taking Avonex if you just can't stand it. There are other medicines you can take that you might actually take.

[Nanobaby]

Kudos to you for going on a dmd so quickly!

I waited 5 years after diagnosis to go on any dmd because I was a needle wimp. 5 attacks later, I have finally come to terms with the once-a-week injection of Avonex. Everyone's experience is different; hope your next one will be less unpleasant.

For the first six months on Avonex, I would basically lose Thursday (Wednesday nights are my injection night). Would just be exhausted with a headache. It's now been 14 months and the worst of it is that I get a slight fever at night, so before bed I take ibuprofen.

The side effects do diminish over time so don't give up yet! You might also want to try injecting during a different time of day. Some people feel that injecting first thing in the morning diminishes the side effects. For others, mid-day. Like I said earlier, everyone's experience is different so play around a bit to see what works best for you. You are in my prayers

[lstrl]

Have you medicated at all on shot night? I was told to do this before I ever started, and I chose Naproxen because I find it works best whenever I get headaches or any other kind of pains. My neurologist told me to take one a few hours before the shot and repeat when I take the shot. I've only been on it about 3 months, and only twice did I get shaky, and once I had a very mild headache. Other than the shaky nights early on (I'm pretty convinced a lot of that may have been caused by my shot anxiety), it has been smooth sailing for me. I don't know if it's the naproxen or I just got lucky but I'm not changing a thing.

Hopefully once you start taking the naproxen on shot night, you'll feel a lot better. Good luck and let us know how it goes.

[PrissyJayne]

Thanks for all the kind replies and information. I have been medicating before injection - this is something my Avonex nurse had me doing from day one. Over the last 5 weeks I've tried Excedrine, Ibuprofen, and Tylenol. Ibuprofen worked the best but only when I took a full 800mg. I'll be trying the Naproxen this weekend and hoping that it helps.

For now, I'm taking my injection Saturday early evening, so I lose Sunday. Last weekend I had to take it on Sunday and ended up calling into work the next day. I'll try to avoid switching days for now.

Thank you for all the encouragement, everyone. For now I'm sticking with it. TLC you hit the nail on the head. I said the same thing to my husband the other day: the medicine is way worse than the disease at this point. Hopefully that changes soon.

[penny70]

A thought

I have been on Avonex from the get go. Someone told me as I was starting to follow this routine. Still do for the most part. I self inject so not sure if pen works differently but can't see it.

1. An hour before shot take 2 Aleve
2. Numb site
3. Take shot
4. Four hours later take two Tylenol to help w/fever etc.

It has worked fore me...something to try anyway. And I took my shot about 6 in the evening. The worst side effects then was wile a slept.

Hope it gets better.

[BigA]

It does get better - but it's just horrible, horrible at the start.

I went from losing 2 days (a whole weekend) to 1 and then to 1/2 and now evenings. What I've learned is that the nurses only know what they hear and you have to see what works for you.

Hydration the day before? How can this possibly help if you have kidneys? Before the shot? I suppose. Mediating before? Didn't help me since my effects start 4-6 hours after the shot. So I wait for the first signs of a headache and then start medicating.

FYI, if you take a prednisone tablet before the shot, it helps a lot. It's something your doctor can prescribe to you for those first months. Do discuss the risks/benefits of prednisone. That's the same steroids you take for an exacerbation, but about 1/100th the dose.

Find your best routine. I wake up and give myself the shot, first thing. Then I take the kids to school, go to the gym, go shopping and other chores before I am "no good" and then I hop into bed. Yours may differ.

But stay strong. You're experiencing what lots of us go through. Part is the shock every week that you are injecting, that you have MS and that your life seems immeasurably different. All I can say is that it gets better, so hang in there

[PrissyJayne]

BigA - Thank you! I'm definitely trying to figure out what will work best for me. I've not yet had a "flare" per se, so I have not had any steroids to this point. I feel extremely fortunate for this fact! I'll try the Naproxen this weekend and hope that it does the trick.

You're absolutely right - I definitely am still feeling the shock of having to do weekly injections and the DX is still very fresh. So much has changed, and yet it seems like everything is still the same; the world keeps spinning regardless of my DX. I know that sounds odd, but my way of putting it into perspective, I guess.

Full dose #3 tomorrow afternoon! I will report back.

[PrissyJayne]

UPDATE

Hey Everyone - I just wanted to post an update! My injection Saturday was not a walk in the park, but it was noticably better than my previous injections. I took a Naproxen around 4pm, my injection at 6pm, I felt good, even when I went to bed at 11pm. However, I woke up around 1:30 am tossing and turning from the aches.

I managed to keep myself from crying this time, but I did end up laying in bed for 2 hours before I was able to sleep again. In the meantime, I took a second Naproxen. Sunday morning I was crazy tired and my head was pounding, but otherwise I felt relatively ok! I even managed to go grocery shopping and sit at the park while my kids played. This is a huge accomplishment for the day following my injection.

I hope this is a sign that the Naproxen will help and not just a fluke "easy" week.

[CNDGirl]

I found that I had horrible reactions the first two months I took Avonex. Partly because I wasn't really medicating, also because I was always taking it close to bedtime.

I was the type of person that never liked to take medication unless it was really needed. So I thought that when I was taking Avonex I could just work through the side effects and not take Tylenol or Advil. This was a bad idea. After 6 shots, and horrible side effects I talked to my pharmacist and neuro. My neuro couldn't believe I wasn't taking anything. He basically thought I was crazy. My side effects made me feel like I was in the movie Trainspotting coming off of heroin. I would shake for two hours, and buckets of sweat would come off me.

So I began following a routine of two extra strength Tylenol 15 mins before the shot. Then exactly 4 hours later two extra strength advil. For a while I would work it out so I took the advil right before bed. I even started taking the nighttime advil to knock me out. Over the first year this routine pretty much worked for me. Although I found the worst part of my symptoms always started 4-5 hours after the shot. Sometimes I'd wake up with a migraine. So I'd follow up with one advil in the morning. My pharmacist said that Advil is best for muscle aches, inflammation and headaches, but if it's fever and chills take tylenol. I also recommend staying hydrated after the shot. Hydrated before never made a difference, but afterwards I noticed I would wake up at night dying for a drink.

The best thing that worked for me was taking the shot during the day. I never wanted to do this because everyone always said try and sleep through the symptoms. I figured there was no way I could I manage a full day with this. Anyways one time I was leaving the country and didn't want to travel with the Avonex. So I had to take the shot first thing in the morning before my flight. I took my Tylenol, then the shot and brought some advil for the flight. Honestly it was the best thing ever. For me taking the shot during the day, let me stay medicated better, hydrated better, and by the time bedtime came that night, I was exhausted and passed right out. Didn't wake once. I think for me I was able to "listen" to my body during the day, so if something felt off, I corrected it. So now I generally take it mid-afternoon. Like 2 o’clock… night time just didn’t work for me.
The first couple of months are hard. I urge you to stick with it. I do remember once standing in the grocery store the Saturday after my shot, not remembering which isles I had been down, and what I was looking for. The haze goes away, and it does get better.
I’m not totally alone like you, but I had a 2 year old when I started, I worked a fulltime job, and was finishing my Certified General Accountants designation, all when I was diagnosed. It was a horrible 6 months, but I got through it. You will too. Just keep in touch with people on here, and get help whenever and wherever you can. Don’t be afraid to let little things go like vacuuming etc. Things will work out and you’ll get your life back on track.

[limpy-doo]

I started Avonex by 1 month titration in September of last year and than the AJ pen. I really wanted to stop taking it after the first couple of shots, my side effects were all very similiar to yours and I also have a young family. My neuro convinced me to give it more time and after a few months it got a lot better, but I have a precise regimen for injecting. I take 800mg ibuprofen 2 hours before I inject, than when I inject I take 2 tylenol and 2 hours after injection I take 800mg more of ibuprofen and go straight to bed. If I deviate from this at all, the s/e sneak through again.
Good luck! I hope you're able to find a plan/treatment that works for you.

[KatieAgain]

Hey Everyone. I'm newly diagnosed with MS and Avonex is my first treatment option.

I just finished titration and injected my first APen. I honestly don't know if I can do this. I'll try to explain without sounding like a complete baby.

My husband is stationed in Korea for a year (yes, I'm doing this alone) and I'm raising our two kids, ages 8 and 5, and I also work full-time. If that's not enough, just today I signed paperwork to withdraw from school where I was studying Finance because I couldn't keep up.

I am seriously affected by the side effects of Avonex. My flu-like symptoms last 24-26 hours and they are intense!! No matter how much I hydrate before, during, and after, I feel like I'm about to die. My body hurts from the top of my head to the last joint in my toes. I get a severe headache. I shiver. This last injection was brutal!! I take it around 6pm to try to sleep through the worst of it. This time the aches woke me up, I would cry and stretch until I wore myself out, sleep for 45-60 minutes until the pain woke me up again, and I would cry myself to sleep again. I feel like I have a vice grip on my temples.

I discussed this with my neurologist (who I haven't seen since diagnosis in February) yesterday and she urged me to stick with Avonex. She asked me to give it 6-8 months!! Here I am, basically losing an entire day a week while acting as a single parent and working full-time. Does it get better?

I guess I'm just looking for someone to tell me they've had a similar experience or tell me that it gets better or something!! My neurologist gave me a RX for Naproxen CR and said that should help. If not, I don't know how long I can continue on Avonex.

Darling, can I be blunt? You are military, I am retired military and I know exactly what you are going through. You have too much on your plate. I am glad you withdrew from school for now...that can wait.

I applaud you for going on a DMD right away, IMHO, it is the best thing to do. Avonex was my first one too...was very hard for me to get use to and when I finally did, I developed an allergy. Avonex is a great drug IMO, but some of its side effects are indeed brutal for a lot of people. There is no way I could have gone through Avonex with two little ones in tow, a full time job and deployed husband.

My advice, given the circumstances is to go back to the neuro and inquire about Copaxone. It will make your journey easier.

When hubby returns from Korea, look into The Military's Exceptional Family Member Program. Additionally, call your Base Family Support Center, they can probably assist you, even with the kids if you need it.

Thank your husband for me for his Service, and thanks to you and you wee ones for all your support. Dependents and significant others are the backbone to the Military. He could not do his job as effectively without you.

Good Luck to You--Katie

[andi b]

one thing I haven't heard mentioned...

I've been on Avonex for 2 years and 4 months and now have NO side effects. The first few months were variable, side effects, no side effects, side effects again. (mostly headache, fuzzy brain and shaking chills in the middle of the night).

It wasn't until someone on here (can't remember who) said that removing the Avonex from the fridge several hours ahead of the injection was the way to go in avoiding ugly side effects... so now I take it out of the fridge on Friday morning before I go to work and inject as soon as I get home. (of course I live in a pretty cool part of the country so if you live in a hot place you might want to modify this time frame of having it out of the fridge).

I try to premedicate, but don't always remember. On the days when I have forgotten, the only thing I noticed was a slight headache. I do feel a bit more tired on Saturday, but I use that day as a "me" day and just relax... after a week of working and then my shot, I deserve it!

[Quilter1234]

Avonex

I do my injections on Friday morning. Like andi b, I remove Avonex from the fridge. I remove the Avonex from the fridge on Thursday evening prior to going to bed. On Friday morning, I warm the syringe to body temperature, without the needle, by putting it in my bra. The only side affect I have ever had was being more tired than usual for several hours after an injection.

Fortunately, most of the time after injections, I feel no different than any other day. I have never had the flu like symptoms, even when first starting Avonex. When I started, there was no titration. I mixed the Avonex powder, filled the syringe and injected.