Calling all MS er's on Meds

[ghcoughlin]

Hi guys
I have been on Copaxone for over 5 years.It has been wonderful for me.The past 3 months it seemed to be causing slight depression.I couldn't stand it and stopped taking it.My Dr. was fine with it but wants me on one of the MS drugs soon.Can anyone give me some insight into the other drugs.I am leaning towards Avonex only because it's a once a week injection.I'm concerned about the flu like symptoms.I have heard other people say it is awful the following day of injection.So much so you need to plan it around your days off.
I would appreciate any info
Thanks
Heidi

 

[dj2]

keep in mind that everyone will react differently. there is definitely not one standard path for this disease, nor for its treatment.

it would be great to hear from some avonex users.

my story: i was on copaxone first, then was switched to rebif. the rebif made my liver flunk the blood tests (they monitored me monthly), so i was pulled off that. i felt pretty yucky while taking it, too. dr. wanted me to switch to avonex, but i didn't think i could handle either the shot itself (goes deeper into the muscle, so it doesn't come with an auto-injection device the way the other two, which just went under the skin, did), and i was also afraid that i would feel bad on it, worse than the rebif because i'd heard the kinds of things you'd heard, too. i'll never know now because it seems i'm "secondary progressive" now, so none of the four will really help me at this stage.

i wish you the best with your decision.

-dj

 

[ghcoughlin]

Thanks dj
Taking the Copaxone was a pain every night.But hey it was easy with the auto injector.
I know what you mean about the Avonex going deeper and no injector UGH.I am not to thrilled with what I hear about Rebif either.
Good luck with your MS remember attitude is the best medicine.No needles ha ha ha
Thnaks for your input
Heidi

 

[pjv007]

I started with Avonex a few years ago. The flu like symtoms were nasty. You also had to mix it yourself then. For the past 2 years I have been on Rebif. I believe it is the same as as Avonex except it is 3x a week vs. 1x. It is also not intramuscular like avonex. I have been tolerating it well. I thought it would be worse since it is a higher dosage that Avonex. I think because it is 3X a week, it is always in your system. If I take tylenol with the shot, I feel almost no side effects. I was also one of the lucky ones to get 1 dose of tysabri before they pulled it.

 

[spotdog]

I just wanted to say welcome pvj007! I do not know alot about MS meds, but my stepdad has MS and other medical problems. I frequent this board because I have a, usually well controlled, mental illness and love Disney.

Keep asking questions because many of the people here have experienced alot.

 

[Nanajo1]

Hi,
Rebif is the only MS drug I have not been on. I was on Beta-Seron when it first came out in the 90's but after a couple of years I had site reactions and stopped. I then was on Avonex for several years. I injected at night, took a motrin and slept. It was only recently that the flu like sumptoms spilled over into the day and I had to stop. I then went on Copaxone and did not tolerate it very well. I kept waiting for the site reactions to diminish but I would have large, red, hot areas wherever I injected. I didn't want anyone to come near me. So right now I'm off all MS drugs.
As far as injectng Avonex it does get easier once you get comfortable with it. They do offer syringe holders and other devices to make it easier. I found that injecting at night and taking motrin or whatever helped. Like I said I tolerated Avonex for several years.
Good Luck!

 

[ghcoughlin]

Thanks everyone for helping me out.I know about the site reactions with Copaxone.They NEVER stopped with me.Then 2 weeks ago they got very bad and the Dr. said I was having an allergic reaction.I also experienced horrible side effects upon injection.There wer times I thought I needed to call 911.Tightening of the chest,anxiousness,nervous,hot face.It would last an hour then I would be freezing cold not able to get warm.The drug company help line said that was normal to some people not to be alarmed.
I don't know how long the Dr will allow me to stay off any drug.I am one of the VERY fortunate ones.My MS very rarely interfers in my life.In 2001 DH and I took the kids to Disney earlier then we planned to."I want to take them now before I get to the point I couldn't do it.Well planning our 10th trip and MS isn't holding me down.
I am leaning towards the Rebif easier to inject.
Thanks again everyone !!!!!

 

[dj2]

I don't know how long the Dr will allow me to stay off any drug.

it's your decision, isn't it?

 

[ghcoughlin]

You are so right it is my decision.I am going to take my time about it.Unless of course I start having problems.I am one of the ones who doesn't have BIG exaserbations.I go slowly with symptoms.
Thanks again
Heidi

 

[pjv007]

I just wanted to say welcome pvj007! I do not know alot about MS meds, but my stepdad has MS and other medical problems. I frequent this board because I have a, usually well controlled, mental illness and love Disney.

Keep asking questions because many of the people here have experienced alot.

Thanx!
I have been able to find lots of valuable info here.

 

[Grammyof2]

I took Avonex for about 2 years. The flu like symptoms went away after about 4 months. Others have told me they always had reactions. I had to stop taking it because of seizures. Right now I am off the MS meds, wasn't tolerating any of the meds we tried, and with the eplisepy, makes it hard to take the MS drugs. Good luck on your decision, and remember - it is YOUR decision.