Starting Betaferon on Monday, anyone got any advise?

[Lilamz83]

I'm very nervous about starting this drug, not the needle part of it that hasn't bothered me, it's the side effects (flu like symptoms) and just the general worry of putting this drug in my body. I know it's there to help me, I've had 4 relapses in 6mths! One of which I am still badly suffering from now. So I was just looking for some encouragement from a sufferer who is currently on Betaferon, please help

Thanks
Amy

[Toomnyhats]

1. Do what the nurse tells you to do.
2. Do what the nurse tells you to do.
Then ... do what the nurse tells you to do!

Now that the important stuff is out of the way don't sweat the rest of it, like the POTENTIAL side effects. No where is it carved in stone that you WILL get ALL of the side effects. You may. You may not. Maybe you'll have some for a few months. Maybe you'll have some for as long as you take the drug. Maybe you won't get any at all (yes, it does happen - I'm proof).

Give your body 3-6 mos to adjust before deciding whether it's for you or not. Come here any time (medications thread) to ask questions, we'll be more than happy to share our knowledge!

[Lilamz83]

Thanks

Hey, thanks for that, I'll be sure to give it time as you have suggested before giving up and I do hope I'm lucky like you and get no side effects

Thanks again

[Madeleinemom]

Yep, follow instructions and don't hesitate to ask questions!

I have been on Betaseron (the U.S. name of it) since 2007.

Just some very mild side effects in the beginning (slight headaches), and these faded very quickly.

A follow-up series of MRIs last year showed z e r o active lesions; at the time of diagnosis, there had been 20+ active ones in my brain alone.

So, give it a shot (pardon the pun).

[Bob698]

Its been said already, you might feel a reaction or you may not. You can get over most of it by premedicating with whatever you'd normally take if you caught a cold (asprin, advil, etc.).
The shots might be a freak at first but you'll be amazed how quickly it becomes just a part of your routine.
Just talk to the training nurse about which habits you should follow and stick to them.

[salamandertom]

Hi,
I started taking betaseron in March. I am just on the full dose this week. that was the part that made me feel better. My neuro allowed me to get up to the full dose at my own pace - as I had some nasty headaches as side effects. So, keep track of your symptoms and where you give your shots - basically do what the nurse tells you to do (lol - really good advice) and you will be good.

Best of luck, the shots get commonplace and just plain annoying after awhile. HUGS

[Lilamz83]

I FEEL SO ILL

So i took the first jab of betaferon yesday and 3 hours later i regretted it, i felt so ill, my whole body severly hurt, even my eyes hurt. i took some painkillers and went to bed but 3 hours later was up again feeling just the same so i took more painkillers but then felt sick, my MS doesnt even make me feel this unwell. I have spent the whole of today laying on my sofa still in my pj's questionning whether this drug is really worth it

[Bob698]

Try to understand that we don't take the DMDs to feel better. We take them to hopefully stop or slow the damage our immune system is doing to our nervous system.
That's counter to the way most medicines work but that's the way it is. You need to build a tolerance to this stuff.
Check my early posts at MS World, I got my butt kicked for a while but I stuck with it. In my case its been worth it.
Try taking your flu stuff a couple of hours or so prior to your shot (better yet, ask your Beta Nurse for advice. I'm not sure what you mean by "pain killers").
Hang in there, it sounds trite but many of us have been through it.

[Lilamz83]

Thanks

Thankyou all for your encouragement

I have been taking ibuprofen and paracetamol to combat the side effects, however I am now having stomach cramps which I think are as a results of taking the above painkillers, does anyone know of anything else I can take that is kinder to my stomach.

[Bob698]

I take a couple of 200 mg Advil caplets 90 minutes prior to my shot.
I think you're over-doing it a bit on the pre-meds. Just take what you would normally take if you had the flu or a cold. Something in the asprin family is usually enough.
You might want to play around a bit with the dose and when you take it, but start small and work up.

[golfwidow]

I agree with Bob....don't overdo the pain stuff. I take Advil.
Also, drink lots of water, not just on your shot day but everyday. Yes, I had the yucky symptons for 6 months ( posted on your other thread a little while ago) but as I said there, my MRI's are good now and the flu feeling finally let up......still get it every now and then but not so bad.


did they titrate you on your medicine or did you take a full dose the first time ? Titrating really helps, ask your neuro !

[Bob698]

did they titrate you on your medicine or did you take a full dose the first time ? Titrating really helps, ask your neuro !

That's an excellent point, and one I forgot about.

If you're starting out with a quarter dose of Beta, you're titrating. A couple of weeks later you up it to a half dose, a couple weeks after that you go to 3/4s, etc.
Check with your Doc ASAP if this isn't what you're doing.

[dann]

pre - meds

Taking ibuprofen or something like it is a necessity to take BEFORE betaseron------ it will not do the trick if you try to take it after you are experiencing the side effects! My last MRI was 'stable' and have been on beta for 2 yrs