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Avatar universal

When do you know your med is not worth it?

I started Beta a little over 2 months ago and have not been the same since.  Major pain & fatigue from around 8 to 30 hours after each shot.  I've gone from walking with very slight balance/gait issues, to needing a cane and the buggies at stores.  I'm waiting for my next dr appt (in 2 months) to get a tag for my car because I have difficulty getting across parking lots and then into and around the stores.  I was not this way before the medication.

I've spoken to the Beta nurse and the dr and they seem to think it is normal and just tell me to take some motrin.  To me this is not normal.  I'm miserable and motrin does not even touch the pain.    

I want to do something about it but since my appt is still so far away I'm at a loss.  I've thought about just quiting but my family gets upset when I mention it as they are afraid I'll get worse without it, as they think it is the ms and not the medication.  I honestly am at the point where I think the medication is NOT worth it.  I'm sick of lying in bed at night crying because my legs hurt so darn bad.  

Any thoughts are welcome and thanks for listening  
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Avatar universal
Hi there
I'm sorry you are having these problems, I agree that stopping the beta for a couple of weeks is a good idea.

I am on it and have had no side effects apart from headaches for the first couple of weeks which I could easily cope with.

Like Ess says there are always alternatives to try.

I hope you feel better soon.

Mand
Helpful - 0
Avatar universal
Thank you both for your comments. My husband is finally seeing that I am utterly miserable and can't take it anymore.  So I am going to stop the medication like you suggested for two weeks or so and see how I do, as I can always go back on it.

ST
Helpful - 0
195469 tn?1388322888
Of course...that's exactly what to do.  My brain didn't even think about that.

ST, I agree 100% with ess.  Of course, stopping the medication for a couple weeks, will tell you whether the medicaion is causing these symptoms.  Please let us know what you are going to do.  I say, go with Ess.

Heather
Helpful - 0
Avatar universal
There's only one way to find out whether the DMD is the culprit, and that's to stop it. In your shoes that's what I'd do, if only for a couple of weeks. Your disease can't progress much in that short a time. I'd also let my neuro know what I was doing, so that if Betaseron is causing this, I could switch to something else without a big delay. The best choice would be Copaxone, since the interferons have similar chemical composition.

Please keep us posted. We're very concerned about you.

ess
Helpful - 0
195469 tn?1388322888
I hate to disagree with the "experts," but I do NOT think this is normal at all.  In fact this is the first time I have heard about Betaseron causing these kinds of problems.   I say they are no normal.  

The one person that may be able to help you since the doctor and the Beta nurse aren't, is your pharmacist.  They know about every drug and can tell you whether this is serious, which I think it is.  You can then call your doctor and tell him that you would like to switch drugs, since you have having such serious side-effects with this one.

You should not have to suffer like you are suffering.  Please, calling all Beta users, have you heard of something like this happening before?  ST needs your help and fast.

My many blessings.  We're with you...you're not alone.

Heather  
Helpful - 0
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