Long-term Avonex Users

[AnneShirley]

TLC 31 thanks for chiming in!

I'm seeking feedback from long-term Avonex users and appreciated your views. I'm a huge needle weenie and am so surprised I'm still self-injecting that huge IM needle. I haven't tried the "auto-inject" as I'm slow and steady with my weekly pokes.

In a way, I'm afraid to switch, getting new side effects, etc. But my neuro would want me to go to Tysabri, if any active lesions are on my MRI. I get a yearly MRI, stable, but tons of the old damage.

I resolved that I would switch, if there were enhancing lesions, but "I'll jump off that bridge when I get to it" so to speak. I often wonder why folks switched their DMD's.

Again, thanks for your feedback!

Anyone else wanting to chime in. . .

Well I'm chiming in! I am on my fourth DMD: started with Copaxone for one year but has four relapses so we switched to Tysabri. Lots of side effects with that but I developed positive labs. For JC Virus antibodies so elected to change to avoid PML. Then I started Aubagio as I was sick of infusions or injections. Couldn't tolerate the side effects. So now I am taking Avonex once weekly. My daughter and son have learned to administer the injection which I am thankful for. The flu like symptoms are no fun and my leg and other muscle/joint aches are nagging. I do take Tylenol with some relief but still they nag on. Any suggestions?

[Bobomarie]

Avonex long time user

I've been on Avonex since March 2000, residual flu-like symptoms happen if I don't take precautionary measures:
1. Drink lots of liquids day before, day of, and day following Sunday shot.
2. Take Tylenol or Alleve about 2 hours before giving myself shot in morning.
3. Use ice on victim thigh before injecting.
4. Do shot as early on Sunday as possible, as later equals more self-resistance to doing the shot.
5. Accept that weekly shot has presumably kept me from further exacerbations, so just do it, damn it!
6. My husband gives me chocolate or a shot of Bailey's on ice post shot as a reward. I didn't say I'm a saint or really a bold-postitive person :-)
Cheers, Bobo

[tekdiver]

I switched to Avonex after having tried 2 other therapies, I tried Tecfidera recently and may I say, I am thrilled to be back on Avonex!! I hate that the black holes continue to eat away at my brain but I am now trying a whole food based diet in conjunction with traditional meds to see if that helps - only foreseeable side effect - I may get healthier =)

BTW, I have always been told that herbal remedies were BAD, BAD, BAD, when it comes to MS patients. Ginko hit me like Mike Tyson =O

For what it's worth...

[Bobomarie]

Long needles?

Are you using the 1 1/4" needles included in the Avonex kit? Ask your neurologist for Rx for 1" needle. I know it's not that much of a difference in length, but it looks and feels a lot shorter to me. Beside being shorter, it's thinner. Makes a difference! Cheers!

[BigA]

I switched to Avonex after having tried 2 other therapies, I tried Tecfidera recently and may I say, I am thrilled to be back on Avonex!! I hate that the black holes continue to eat away at my brain but I am now trying a whole food based diet in conjunction with traditional meds to see if that helps - only foreseeable side effect - I may get healthier =)

BTW, I have always been told that herbal remedies were BAD, BAD, BAD, when it comes to MS patients. Ginko hit me like Mike Tyson =O

For what it's worth...

Good for you on the diet. I'm a believer. Be sure to get your vitamin D levels checked too.

[k4k1958]

K in the bAHAMAS

Been on Avonex just over one year, doing ok, all by myself, no flu like symptoms,took the advice of other users on this site -slap ice pack on my leg and then stick myself - very good!!