Question about Avonex
 

Hello all. Well it finally has come down for me to start on MS therapy. If anyone has been on this can you tell me your experience please. Do you feel back to normal? Are you able to work again? What they explained to me is a shot once a week. I'm also going to start next week syomethrol (don't know if that's how you spell it) steroids through IV for 3 days. I'm 33 years old female, mom, and wife and I am still going through the fatique besides foot drop, numbness on some part of my bodies, double vision because of 6th nerve palsy.

Thanks

I have been on Avonex for 8 years. For most people there are flu like side effects, slight fever, body aches, general fatigue, for about 6 months when starting. This is true for all of the Interferons. Just take an OTC medication like Aleve or Ibuprofen, Tylenol is recommended since that is what was used in the Trials, but it is probably the least effective. For bad side effects a low dose, 10 mg, of Prednisone about 6 hours before the injection is very effective. I do not have any side effects, for about 7 1/2 years now. Do my shot Friday morning, 2 Naproxen (Aleve) and just go about my day.:)

The needle is long, 1 1/4 inches, but it does not hurt, just imposing. There is a shorter 1 inch available, it just has to be requested, I use a 5/8 inch needle since I have no fat on my legs. The once a week shot is very easy to fit into your life. Most people do the shot on their thighs, big muscle and easy to reach. Just rotate injection sites.

My avonex story
 

I was officiall diagnosed in April of 2007. I was hesitant to take the Avonex due to the cost and side effects and did not begin until January of 2008. I received incredible training and support from Biogendic. They are awesome. The in home nurse trainer did a great job showing me how to do the injection. I must say the first month I did have achiness and a small bit of fatigue the Saturday after I did the shot on Friday night. That went away after about one month. I was on a l/2 dose then. I did great, however I think I may have suffered from some depression with it and started on depression medication in June of 2008. It is hard to say if the depression was from the Avonex or the fact that I knew I was going to lose my job. In any event, the depression medication (zoloft) has helped me keep a positive attitude throughout this adjustment. In August I went to a full dose and had wicked headaches and threw up all Saturday. My doc said to stick to the 3/4 dose and I have done well with that. Since Avonex is not a cure for damage already done, it is hard to say if it has improved my condition. I have not had a follow up MRI, can't afford it. As to suggestions on the injection. Take your ibuprofen before you take it. I do it right before I go to bed on Friday evening and sleep through the side effects. I do not have any side effects at all now. Make sure you use the ice to dull the skin layer. Take your time. Don't rush. Sit on a firm chair and sit up. I have teenage daughters who after I did it for a couple of months, wanted to see what I did. I let them see it. I have traveled with it. It does not bog me down now. Everywhere I travel they have ice, so no biggy. Ask for the thinner needles. The only thing I am still working on is maintaining quality skin care at the site on my legs. Now understand I am 54 so my skin is not great to begin with, but on the legs where the skin has been numbed by the ice repeatedly, it does get a bit leathery. I am checking into what I can do about that. I use lotion and am thinking that I will call Biogenic about that, but other than that that's my story and I am sticking with it. I am here for you if you need to communicate.

What Wkikta said, with a couple things to add:

The Avonex will not help your MS symptoms, it is only to help reduce future relapses. The Solumedrol will hopefully help with your current symptoms or keep them from getting worse right now. You'll probably feel like crud from the steroids but once that wears off you might notice a difference and feel pretty good. Everyone responds differntly to the drugs so there is no guaranty.

I hope you feel better soon.

Thank you so much everone for the advise and kind words. I just been told that I have to pay 100.00 a month. Right now I'm not working and trying to get disability but still waiting on that.

At least know what to expect now. I'm a little nervous but I know I can do this. Things could be worse I tell myself. I'm looking on getting surgery on my left eye in March to put back in alignment since it has moved inward.

I just hope i'm not doing too much for my body all at once.

Thanks again,

I'm sure I will be posting more as i go through this.

This site has been invaluable to me as I move through this journey. Keep your head up. It does get better.

Hi,
I was on Avonex for 4 weeks. I did not like it at all, I took a half dose, the side effects were more than I could handle, my hair started coming out in clumps, I only had about 2 good days a week, so I decided to get off it. I was off for more than a year and started having attack after attack, found out about LDN. My neuro wouldn't even talk to me about it, so my MD prescribed 3 mg. I have been on it 4 years, I think 1 attack and it was mild. The best choice for me and I pay $32. a month. It is not a cure, it slows the progression. Good luck with whatever you do.

I have been on Avonex since 4/97! I can honestly say that I am a 'little' overweight so the size of the needle doesn't bother me a bit. Also I was an RN so I had no trouble giving myself a shot. I did have some flu like problems at first but I take 2 Aleve an hour before each shot and I don't have any problems. I don't know what would happen if I didn't take that Aleve but it is usually the only Aleve I take a week so I don't worry about it. My MRIs look the same now as they did in 1997 so I'm sticking with my Avonex.

Just a note on the LDN, it does nothing to change the progression of MS. It does make your life better by increasing the production of Endorphins by your body, your feel better, so your life is better.:)

Hi Bill, I did not know that about LDN, I thought it did help the progression because I wasn't having the attacks any more. Can you tell me where you
got that info. Just curious to know. It has helped me in whatever way it works. Thanks