Can you tell me your side effects?

[MidwifeJeri]

I was diagnosed in July and will start the injectables in a month. I am trying to decide on which one.

I think I am leaning to Avonex. Can you tell me....

What side effects have you had? (be specific?)

When do they start after you have the shot?

When do they leave?

How long before you got used to it?

Thanks so much!

[bbelaine]

I've been on Avonex since February-the side effects occur but they are completely manageable. It starts about 6-8 hours after the shot for me-mostly fatigue, sometimes a slight temp elevation (1-1 1/2 degrees), maybe a little headachy. I usually premedicate with tylenol before the shot, then about 4-5 hour intervals during the day if I feel like I need something.

I hadn't been feeling too much lately, so I thought I'd skip the pre-dose last time. That was the worst I'd felt (but still not too bad) so I think I'll keep up with the pre-dose for a little while longer. By the next morning I'm fine again.

I decided to take my shot in the morning, thinking that if I felt crappy, I'd rather have it during the day when I can distract myself, than in the middle of the night. I take it before I go to work, and I don't plan things for the rest of the day when I get home. If I had something special to do, I would change my shot by a day for that week.

I started with the syringe which was really difficult (mentally) for me to do, though I still managed it. The pen is so much easier-no anxiety beforehand-just get up and do it. If you go with the pen, remember to listen for the click that lets you know it's unlocked before you try the blue button. I had some difficulty with it because I hadn't unlocked it properly-thought that when the little window was covered I was good to go, then I couldn't press the button no matter how hard I tried-my husband took over about 3 times.

I got some advice from people on this site to listen for that little click when you unlock the device first, then press the button. The blue button makes a really loud click that you will definitely hear. Good luck to you.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Westgrl]

I would highly suggest you start with titration. This is a gradual increase up to the full dose. That was how I started using it in May & I had virtually no side effects and none by the first full dose.

Just keep in mind, if you will be using the Avonex pen, the titration is in a regular syringe so you will either have to learn how to give yourself regular injections or have someone do it for you. You will start the pen on the 5th injection.

I did follow the advice of everyone to drink plenty of water the day of the injection & take OTC pain/fever reducer. I really think if I had taken a full dose right from the start that I would have been slammed hard with the minor side effects I felt with the smaller doses.

What I did experience was..

1st injection (1/4 dose) - very fatigued & just felt a little "funny", very slight increase in temperature but was good by morning

2nd injection (1/2 dose) - some aches & pains but nothing that wasn't easily tolerable and gone by morning

3rd injection (3/4 dose) - some aching in my back but I normally have back spasms so I think it just increased them

4th injection (full dose) - no side effects

[Bob698]

Before I get started, let me warn you to be very careful in looking for these comparisons.
We all react differently and on different time tables. That includes all of the meds.
You should be concentrating on which med is most effective against your MS instead of looking at how it could effect the rest of you.

Anyway, I've been taking Beta for three years. Its still my first DMD. It took me a little over 4 months to build my tolerance to it and sometimes it still whups up on me. I still premedicate prior to my shots. My MS results have been excellent so far. So good that my Neuro and I have been blowing off MRIs for the last two years (although we're thinking of doing one just to check and play it safe so I have one set up for next month).

Side effects were kinda dramatic when I first started out although other people have reported no side effects at all. In my case it felt like I had a pretty cruddy version of the flu for an extended period of time. It seemed like it didn't take food very long to pass thru my system after I ate, about two hours.
As it is now, I can get random side effects but they don't happen a lot. I just do my shots every other day and its no big deal.

One last piece of advice, when I was first starting out my Neuro's head nurse took me aside after I picked my DMD and told me "We're not supposed to tell you this, but sometimes this stuff can hit like chemo until you build up your tolerance. Sometimes it does, sometimes it doesn't, and we have no way of predicting who will have an easy time of it and who will get clobbered. The one thing you need to know is that you really have to stick with it until we know if the med is effective. Its really important."

That was some of the best free advice I've ever gotten.

[BigA]

Now? Almost nothing. Just a headache.

First month: All-day suffering, headaches, bodyaches, depression, burning hands, painful joints

After a year. Terrible headache all day, some bodyaches and painful joints

After two years Terible headaches for a few hours.

[Alicious]

What side effects have you had? (be specific?)
Fairly intense fever, chills, aches, sweats, skin sensitivity. Also, an ache in the muscle I injected into from 48 hours to about 4 days; this is nothing major, though. (I titrated; I'm just "lucky.")

When do they start after you have the shot?
About 30 minutes if I haven't taken enough ibuprofen

When do they leave?
About 24 hours after injecting, although they start radically decreasing about 18 hours after. Basically, I medicate for 24 hours, and if the dose wears off, I notice symptoms.

How long before you got used to it?
It's exactly the same as when I started interferons 5+ months ago. Most people acclimate, but some people don't. It is likely I am in that group, but we're a small minority. (If you don't acclimate by 6 months, studies say you are unlikely to.)

Always remember you can switch meds if the one you choose isn't right for you. All else being equal, I preferred Copaxone by a long shot, but it wasn't working well enough for me. For some people, it works fabulously.

[Tracelyn]

I have been on Avonex for almost 2 years now.
My symptoms are very similar to the flu. I have the ache, chills, fever etc.

Over the past 6 months I had woken up out of a dead sleep where I felt like I was freezing to death, we are talking teeth chattering etc. My hands were cramped up, and I was bent over like a old lady. I at first was thinking that maybe this is not what I should be taking, but I have finally realized when I have that 30 minutes of discomfort (the time it takes to take more Aleve, climb into the bed under a mountain of blankets, and fall asleep) that I am actually recovering much faster from the hang over.

I always schedule my shots for the weekend so if I am not doing well, I can stay in bed and with the "bad" reaction I have been having, that I am up and active by 11 am, with little to no fever.

[BigA]

I take my shots in the morning on saturday and that way when the headach starts, I can take aleve and if I need to lie down, I do so

[Kenmore]

I was diagnosed in July and will start the injectables in a month. I am trying to decide on which one.

I think I am leaning to Avonex. Can you tell me....

What side effects have you had? (be specific?)

When do they start after you have the shot?

When do they leave?

How long before you got used to it?

Thanks so much!

I've been on Avonex for about a year and a half. I had very few side effects for the first 3 weeks during the triation. But I did everything by the book. I drank about 10 glasses of water before the shot and took the ibuprophen 4 hours before and then consistently every 6 hours after (2 200 mg). My side effects were mostly headache.

I went on the full dose and for a while (about 4 months) I had chills, headache and a slushy head, joint aches, etc. But they were controlled by the ibuprophen and a lot of water.

I timed it and they came on almost exactly 6 hours after the injection.

I've found that taking a liver supplement is very useful. I also take high doses of fish oil before the shot along with the ibuprophen and water, and I only have a slight headache.

It typically lasts a day or a day and a half. Sometimes I have a huge boost of energy the day after and feel great. Other times, I'm tired and just rest for the day.

I do my shots on a Friday night if I'm not too tired. It seems like being tired makes the side effects more pronounced. If I'm too tired, I'll get rest on Friday and take the shot on Saturday, rest on Sunday if needed.

I hope that helps.

[Nanobaby]

Physically, the first half dozen gave me the typical flu-like symptoms (fever, chills, insomnia) for about 24-36 hours post injection. Was also really tired afterward & would sleep the next day away (my injections are on Wednesday nights). I lost quite a few Thursdays.

Now, I have those symptoms for the 8-10 hours after & I'm back to normal after. Wake up early, go to school for 7-8 hours & I'm golden.

[kryptonite]

Did anyone notice hair loss or a change in body weight on Avonex?

[MsGymRat]

bob698

Thanks for your post!!!
I'm on Betaseron and just started the full dose the Monday before last.
Your post is very helpful to me!
Karen

[fourcats]

Avonex side effects

I started on a titration regimen and then went to the pen by week 5. I have been on the full dose for about 3 months. I have never had any side effects. I am thrilled that I don't have any problems at all. Hopefully you will have such a good reaction too.

[TomD]

My Side Effects With Solu-Medrol Infusion

Hi,
I had only two infusions of Solu-Medrol and my Neuro discontinued them because I was experiencing shortness of breath and tightness in my chest. Once those symptoms left me I was feeling better than I was without them. Oh well, back to the drawing board.

[agate]

What side effects have you had? (be specific?)

When do they start after you have the shot?

When do they leave?

How long before you got used to it?

Thanks so much!

I was on Avonex for 3 years but bear in mind that I had had SPMS for over 20 years when I started Avonex, and so I'm probably not at all typical.

The side effects started about 5 hours after the shot, as the neuro had said would happen. The first time I woke up in the middle of the night feeling faint and feverish and aching. I more or less passed out by sinking back onto my pillow. I was dosing with extra strength Tylenol as recommended.

The second time was easier, and from then on it got easier, but even so it was at least a year until I got over feeling very rotten on the day after the shot, sometimes for a few days after it. The Tylenol did help but I felt as if I had a mild case of the flu.

kryptonite, I never noticed any hair loss or body weight changes in connection with Avonex.

I went off it because one night, a few hours after the shot, I passed out and fell.