Long term Beta users, ever have this happen?

[Bob698]

Last Sunday I did my normal shot at 7 PM. By midnight I had some old flare activity show up (I have issues with cold where it can cause some pretty bad shaking, its more like a mild seizure) that was followed 2 hours later by a fever that lasted about 4 hours.
Last night, blammo. Same thing again. Two hours of shaking (this is more like head-to-toe shivers but uncontrollable) and 4 four hours of fever about 5 hours after my shot. My shots in between were fine.

I'm starting to wonder if its possible that I may have hit a capillary or vein and wound up "mainlining" Beta in my blood stream or if this is just one evil blue box?
I've had random reactions before but never this close together after I built up my tolerance. I've been on Beta for about three years.
I guess the good news is I've already got an app't to see the Neuro next week. She's going to love hearing about it.

[Toomnyhats]

A few years ago I read here on the board that this can happen, even after years of use with no or little side effects. As I recall someone had this happen after 10+ yrs on Beta with no problems, then blam-o one day!

My understanding is it's just "one of those things." Doesn't necessarily mean that there is something wrong with you or you have bad meds.

Do ask you doc about it, or call the Beta nurses.

[golfwidow]

Yes, I have had that happen -----Finally called the Beta Nurse.

She said it just happens sometimes.or...
You may had hit a vein- puts it in your system too quickly
You could be dehydrated
You could be overtired and get a reaction
Make sure you pre-medicate with Advil or Tylenol

I was so shook up I stopped taking my Betaseron for a month.......but then started having all sorts of relapses ---
I am back on my shots and trying to be very aware of all of the above -- especially drinking enough liquids

Good luck !!! I think it is just something we have to deal with time to time.

[Bob698]

Thanks, folks.
I've had reactions before but getting the shakes back was a new one.

[dann]

question

Beta user for 2 yrs or so. Think I saw on here somewhere that beta may interfere with walking. Wondering as I think my walking is getting harder.......any thoughts??

[Bob698]

In my case, if you could picture a graph with your best days on top and your worst at the bottom, Beta keeps me about 7/8ths from the top. I lose a little but its a fair trade since I don't go crashing into the cellar like I used to.

NMSS has some really good vids on their main site that show how the CRABs work.

You also should realize that the CRABs are meant to slow progression of MS leasions. We can still have flare-ups of secondary symtoms because the CRABs don't directly treat that stuff.
Think of it like MS is a wildfire and the CRABs are the bulldozers that build a fire line to contain it.

[Camsue]

had the shakes, chills and sweats

I could count on the chills and teeth chattering shakes around 4-5 hrs after my injections which probably lasted the first 2 years...I often wondered if it was all related to Betaseron or ??...

I started Betaseron almost 18 years ago and now I no longer have 'shot mornings' (wake up feeling flu-like). I was very happy when 'pre-meding' was discovered, that really helps. I use Ibuprofen.

Good luck and stick with it , I am better now than before I started taking the Betaseron..

[Bob698]

I still take Advil prior to my shots.
I tried stopping for a while but got clobbered by a random Beta reaction and started up again. Besides, my GP doc suggested I take an asprin or NSAID for heart health (I'm also flirting with high hereditary BP) along with a beta blocker.

[rdmc]

Hey Bob,

Sorry to hear about your problems.

I just posted on another thread that I've decided to give up Beta for a few months, at least to see how I feel.

I've been on it 8 years and used to never have any, as in NO side effects, even without premed.

Lately I've had side effects with every shot. Fever, cold (not bad shaking like you describe...but that cold feeling you get from a fever), flushed in the AM w/low grade fever, aches and pains, next day having a headache, seemingly increase of symptoms...and I've been premedicating and hydrating.

Plus, not that it's supposed to, but my MS has been in "constant mode" (as far as symptoms being hard to deal with) since March...so I'm giving it a break and will talk it over with my neuro in September.

P.S.Here's the deal about hitting a vein, I've hit a vein in the past and remember feeling like I had more reactions with those shots, but the times I did, I bled after the injection. Usually I never bleed after an injection...so that's how I always measured if I hit a blood vessel.

[Bob698]

If you're getting reactions to every shot, have you considered cutting down the dose or maybe skipping a shot or two a week?

After 8 years I'd be concerned about just stopping suddenly. Maybe mention it to your Doc before you quit? They might have a plan to try something different.

[rdmc]

If you're getting reactions to every shot, have you considered cutting down the dose or maybe skipping a shot or two a week?

After 8 years I'd be concerned about just stopping suddenly. Maybe mention it to your Doc before you quit? They might have a plan to try something different.

I've had to stop it before cold turkey. Had to have a surgery and my surgeon insisted I be off beta for a month before and a month after (this surgeon is a stickler and there is a remote risk of DVD post surgery with the beta that's mentioned in the fine print...so had to go with his orders.) I never noticed any rebound effect...only issue was with starting back up you have to titrate the dose.

My neuro wants me to try BG12 and I will, in the meantime I'll take my chances.

I guess I'm a little nonchalant, or maybe it's fatalistic, about it, but that's just sort of where I've gotten with things MS. I have symptoms I can't control even though I do everything the docs say should work...but they don't, I have a lesion in a bad location, and figure it is what it is...I'm tired of sweating over the details, and I'm not afraid to be off a DMD for a few months.