New Aches from Betaseron

[sittin n knittin]

Has anyone taken Betaseron for a long time with no problems, then started having terrible aching?

It could just be the MS. Sometimes the aching seems time-related to the injection, and sometimes it lasts for days ( injection every other day ), so who knows???

[Crewser]

Has anyone taken Betaseron for a long time with no problems, then started having terrible aching?

It could just be the MS. Sometimes the aching seems time-related to the injection, and sometimes it lasts for days ( injection every other day ), so who knows???

Wow! Thought I was the only one. I had the flu like symptoms for about 4 months in the beginning then it tapered off. Now, 1 1/2 years later I'm starting to ache again after taking the shot. Takes about 2 hours to kick in. Talked to my Neuro about it and even he thought it was odd. Not sure why it is happening and it does not happen every time. Hmmm.

[Bob698]

For me, its random but once in every 50 shots or so I'll get run over by my old buddy, the bus.
I think that's almost normal for Beta but I'd also consider the time of year. Sometimes the flu really is the flu.

[coral12]

Betaseron

I never had the aching but five years into it I began to get so weak that I could not move my body at all. It would finally get better four hours later. It was not until I went to the ER did I finally realize it was my reaction to betaseron. I had to take presription dose of ibuprofen. Now I am on cop axone.

[0485c10]

about 3 years after i started betaseron, having no side affects or problems with it what so ever. I began getting very sore muscles. i began walking like a robot because i flexd my muscles less that way. I had to take some tylenol about 20 minutes before i got out of bed, and take more through out the day and take some more before i went to bed--then the discomfort would wake me up about 4 hours later & i would take some more tylenol to get back to sleep.

I was pretty afraid that my ms was advancing. when the doc advised i go to tysabri i jumped at it. i had a 30 day washout period from betaseron-then i started tysabri.

within the first week i used tysabri, i was no longer walking like a robot & i didn't need to be taking tylenol all the time.

funny thing is in hindsight i know how much i was hurting, but at the time i didn't realize how much i was hurting--it grows on you--not like a sudden pain like a broken limb--it grows so you don't realize the difference until it is gone. i just knew i was walking like a robot and taking a lot, too much tylenol. then when i stoppred hurting i realized how much i had been hurting.

like you i did not know if it was ms progressing or the betaseron?

doc thinks it was probably a side affect i had developed to betaseron after using it for 3 years without any problems?
before i switched to tysabri there was a great number of lesions on my mri, where for the past 3 year i had clear mri's. it was the lesion build up on my mri that caused her to advice me to go to tysabri...

actually the 2 years before i had gotten hives for unknown reasons & i really suspected betaseron..then this hurting so much started the next year.

about the incident with the hives, my pcp also though it was betaseron, she said at that time that betaseron is a protein and the body can suddenly develop allergies to protein. she said the most common example was people suddenly being allergic to shell fish.

my neuro at the time said no it was not from betaseron.
I got a new nuero just after this hurting started, she thought there was something going on with beta in me.


this reduction in pain and not walking like a robot was just a benefit, but the lesion build up was what she was looking at..

she thought that soreness i had developed was less MS related and more a side affect of betaseron i had developed. and she thought that because it woke me up from a good sleep to take more tylenol.

she said ms wouldn't hurt on inactivity, it would hurt more once i started moving.

but i said i hurt during the whole wash out time, it wasn't until my first week of tysabri that i stopped hurting so much.

she thought i might have had some resudual betaseron in me that didn't fully clear out until i started tysbri--so i needed 35 day washout not a 30 day washout to get betaseron fully out of my system.....

and really we will never know what it was, what we do know is its not happening anymore & its not worth trying to determine what something was after its already fixed. lifes too short to try to figure out the past, plenty of challenge figuring out the present.

i do know..
1. betaseron had stopped working for me after 3 years as the new lesions on the mri showed.
2. i stopped hurting so much after i stopped betaseron & started tysabri.

[sittin n knittin]

Thanks for the input. Who knows the reason for anything with MS? I guess I may never know. Sounds like different docs tell people different things. MS - Mysterious Stuff !