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Posted 2/19/2008 8:18 PM (GMT 0)
smurf  Hello all. I am new to this site. I was diagnosed with Ms on the first of December. I had been having problems since june and had gotten the run around from doctors until i finally switched family docs and got a referal to a good neurologist. I was given an MRI on 11/30/07 and was given the news on the 1st. That weekend I went into the hospital for a steroid treatment. 4 days of being in the hospital for treatment of a disease that i knew nothing about. After i got out, I did my research and started on the Avonex injection therapy. I have been on it for a little over a month now and still have nasty side effects from it. I was wondering if anyone else is taking avonex and how it is for others. I know I am not the only one...I just hope they diminish or go away soon because I dread Friday nights now!! Anyone??
Posted 2/19/2008 8:50 PM (GMT 0)

I'm sorry you've been diagnosed with MS, but am glad you're finding some information and supports.  If you haven't already, you might want to go to www.nmss.org , the National Sclerosis Society website and do some reading there.  You'll find lots of stuff on the internet..some of it valid, a lot of it not valid, so it's good to get a "grounding" at the National MS society site first; then you can do some figuring out what you are comfortable with.

As for the Avonex, I'm on Betaseron, another interferon-based drug.  Generally the side effects are the same -- chills, fever, body aches, and ugly red spots at the site of injection. Usually those start to subside after a couple months.  Are you taking something like ibuprofen or tylenol at the time of injection, and then the next day? And taking the injection at night before you go to bed?

Several folks here are on Avonex. I'm sure they'll respond later.

Posted 2/19/2008 9:02 PM (GMT 0)
hi..and thanks for responding. I have checked out that site and alot of other ones too. Its alot to take in and deal with but i am getting there. Yes, i take tylonel before my injection and after. I do it on friday nights when my fiance is home and can take care of our daughter. We have a one year old so we scheduled it then so i could hop in bed and he is on daddy duty! The chills and body aches is the worst part for me. I hope it goes away soon. I know i have only been on it for a little over a month and i have to stick with it but sometimes its so hard. How long have you had MS if you don't mind me asking? 
Posted 2/19/2008 9:20 PM (GMT 0)
dealin,

Sorry about the dx'd. I was dx'd w/ MS Sept 02. Was on Avonex for 4 years.

For me the initial side effects of the flu went away after a month or so. Everyone's body will react differently. I loved the drug. Loved the once a week shot. But unfortunately it lowered my white blood count too low and I ended up being sick with cold viruses and flu viruses all winter long for 3 years.

I kept trying to tell the Nurse Practitioner the Avonex was lowering the WBC too much and that is why I'm sick. She wouldn't listen to me so after the 3rd year I told her the first cold I get in the Fall I'm going off the Avonex.

Of course I got sick in October 06 so I stopped taking it and haven't had a cold or flu virus since!!!

Now I won't meet with the Nurse Practitioner I always tell them I won't make an appt. unless it's with my MS Specialist. Fortunately I haven't had any relapses and I'm sure that's partially due to the fact I'm not sick all winter so my immune system can stay more 'even'.

It might take a few years but you'll learn your body and what is right for you. I tell the doctor what I want to try and what I won't do, like chemo. I make all my health decisions. I stay informed and know for myself. But it's taken me several years to be this confident.

My doctor listens to me b/c when I come to see him I have everything typed up for him. Everything is very detailed and in order so he knows I know what I'm doing. I also exercise...no excuses, as long as I'm breathing and moving I do it, and I think that shows him I'm really trying. Which earns a lot of his respect.

Good luck with your new journey thru this disease.

(((HUGS)))
Kim
Posted 2/19/2008 9:21 PM (GMT 0)

dealin83 said...
hi..and thanks for responding. I have checked out that site and alot of other ones too. Its alot to take in and deal with but i am getting there. Yes, i take tylonel before my injection and after. I do it on friday nights when my fiance is home and can take care of our daughter. We have a one year old so we scheduled it then so i could hop in bed and he is on daddy duty! The chills and body aches is the worst part for me. I hope it goes away soon. I know i have only been on it for a little over a month and i have to stick with it but sometimes its so hard. How long have you had MS if you don't mind me asking? 

I was diagnosed with MS 25 years ago.  It's likely I had it much earlier than that..since around 1970 or so...but I didn't go off to the doctor until my legs starting giving out on me -- I thought I was experiencing seizures or something.This was long before MRI's, for sure.  I've been on Betaseron for the last 15 years or so.
Posted 2/19/2008 11:23 PM (GMT 0)
ME,

 I have only been on the avonex for 5 weeks so i figured it would take some time to get adjusted to it. I have to go do bloodwork at the end of the month to check white count and liver function and all that so i will know if i am taking well to it. so now that you are off the avonex what kind of treatment are you using?

 

Posted 2/20/2008 12:58 AM (GMT 0)
dealin,

I didn't want to start any treatment since having such a bad time with the colds/flu on the Avonex. I stopped taking the Avonex Oct 06 but didn't go see my MS Specialist until the following Spring and I was doing great so he agreed when I told him I didn't want to go on anything else.

All he said was he wanted to monitor me more closely and have me come in every six months instead of once a year. I just saw him last week for one of my 6 month check ups and he said I'm doing great. He scheduled me for an MRI in May and another check up. Will see if anything shows up on the MRI. If not, will continue as am. If something shows up, then we'll have to address that then.

It will take time for you to see how you do on the med. I agreed to go on the med b/c I wanted to do all I could for my body and my health. But it just turned out that wasn't a good choice for me.

I hope your body does well on the med and you have no progression.

I wish you health and happiness!! :)
Kim
Posted 2/20/2008 1:00 AM (GMT 0)
Hi and welcome to the site. What a great place.. I have been on avonex for 8 yrs. now at first I didnt have any flu like symptoms...I had my liver checked every 6 months at first..Now I am experiencing elevated liver enzymes we are not 100% sure that is what causing it.Day after injection my legs get sooooo heavy I can barely move just for the next day and yes I take tyelonol before after and the next day.On the bright side my last 2 MRIs showed no new active lesions so it must be working...Try to stick it out....You dr. knows what is up just be patient and go with the flow..I have had ms for 24 yrs. now I still walk not well without assistance but I am still mobile..You have your hands full with a young child I wish you all the best and Good Luck to you......pokey79

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