Betaseron reactions or a flare? Need advice

[psligtin]

Hi everyone.
I recently started Betaseron. I've actually not even been on it for a month yet. Prior to starting the shots, I was feeling fine. I was not really having any flare-ups and things were quiet and actually pretty normal. With the first shot came the flu-like symptoms -- BIG TIME, which I was expecting. I feel pretty grim when I do the shots. I am hoping that subsides. Tylenol and the like does help. But what I was not expecting was MS type symptoms along with it. Is this normal, or am I going through a flare right as I start my DMDs. I have noticed weakness in my right leg that comes and goes, that wonderful MS hug around my torso, that also comes and goes, and tons of pins and needles all over my body. This also comes and goes. These are all symptoms that I have had prior to being diagnosed. They are not new really. But they've been gone for a while and cropped up RIGHT as I started the meds.
My question is. Should I be experiencing this? I've sort of chalked it up to a reaction to the stress of starting the meds, But maybe I am having a flare.
Has anyone noticed an elivation of their MS symptoms starting the meds?
I've called my neuro but as wonderful as he is, its hard to get a call back right away. (Its been 3 days)
Any words of wisdom?
I'd love for someone to say its kinda normal, and hang in there your body will calm down. I'd hate for it to be a flare. I can't bare steroids AND the flu-like stuff all at once.

THANKS TONS
PJ

[Bob698]

I'm at almost a year on Beta. Hate to say it, but I've gone thru a similar situation. The flu should wear off completely after two to four weeks (note, we're all different I'm just posting my experience).
Long term, Beta feels to me like it damps down both the highs and the lows. Good for flares but you lose a bit for your good days as well.
I guess it helps to concentrate on the big picture of what Beta is supposed to do, namely slowing or halting new damage. That part has really worked out for me so I'll put up with the effects.

[RavenousWolf]

I'd love for someone to say its kinda normal, and hang in there your body will calm down. I'd hate for it to be a flare. I can't bare steroids AND the flu-like stuff all at once.

As crass as it may sound but you are the only one who can answer that question. I didn't like the steroids either because I usually got worse afterwards or they had too little of any kind of positive impact.

As a result, I refuse to take them because they are ineffective for me. But on the other side of the coin I really don't know what truly constitutes a real flair instead of the "ups and downs" of MS. That was something that another neuro told me that I would have learn for myself.

Now I just weather through it as I accept that this is just part of the disease process. I don't feel that it is necessary to be agressive with my MS when it comes to a true flair-up because I really cannot define what one is.

[earnellzwifey]

Well I have not been (partially Dx) that long. Just over a month. I was told any symptom that last over 24 hours could be a flare.

If it old symptoms is it just a flare, if it is a new symptom it needs to be reported to the dr.

Hope this helps and I hope you feel better soon. (((HUGS)))

[golfwidow]

Hi, I don't know if it is normal or not but I have experienced the same thing...........some of ( most of) my prior flare symptoms can raise their ugly little heads after my shot.....especially if I am exhausted from doing too much. My right arm gets the shakes and my HUG comes back, leg seems to drag more, and I still get the flu feeling, even after being on Betaseron for 5 years.....some days are better than others. I stopped taking the meds for about 12 days recently.....(insurance mess) I felt great
during that time period..............BUT when the insurance got straightened out I went back on..........WHY ? Well, I still believe that keeping flares at bay is a good thing in the long run............But sometimes I wonder.......
I know I haven't been of any help, just wanted you to know you weren't alone. If you hear back from your doctor please post the answer here.........would love to hear what he says. I brought up the shaking arm to the doctor's assistant ( I rarely see the doc, he sends in his PA, who I like very much) and the PA'S advice was to have a glass of wine..................................That sounds good to me, but it usually happens around midnight, so I am not thinking that is good advice LOL !!

[psligtin]

Well. I did hear back from the Neuro. (The nurse, that is) They have put me on a predisone taper. Its just 60mg and its only for three days. Not sure what that will do considering the steroids we normally take are much more potent.
BUT. I am following instructions. Heres hoping it will help.
I just hope that me having these symptoms doesn't mean that the betaseron is not working.
That would be devistating, mainly because I saw DMD's as the gateway to having a sort of OK life with MS. I know I'd have issues, and have to rest more and all. BUT I still want to be active. And its a bit hard right now.
BLAH!
I hope this gets better. We'll see.

[BigA]

Yes, I did seem to get worse soon after starting interferon. I was not sure if it was an exacerbation or the medecine. But I also seemed to have an exacerbation while taking steroids, so anything is possible.

Time will tell. Wait until you are used to the medecine. Also, you didn't say when you were diagnosed and how long it's been.