What is yalls experience on steriods?? I am on day three (had IVIG for almost a year now, with pretty great success), but with this recent flare, we decided we'd try steroids for the first time.
I started out with 60mg, and felt like I was gonna kill over (heart racing jittery etc).. I took 40mg yesterday and today.. but I sware I feel like I'm actually feeling weaker- from speech and all the rest (mostly proximal) weakness. I am due for my IVIG tomorrow as well, so that could be it, but I thought i'd feel better with steroids!!?! is this normal to feel worse before better?

I hoped you talked to your Dr before reducing to 40mg.
Mike

Ive been on 50 mg of prednizone for 3 and a half years or so and i got a lot fo the side effects but still feel it was worth it. at first i was hungry ALLLLLLL of the time and i gained a bunch of weight then i was never hungry and lost a bunch of weight. weird mood swings sometimes. slight tremors and cramps and i just had surgery on my eyes for cataracts that were caused by the steroids.

its better than the mg symptoms.

The weakness at the onset is a pretty normal thing. It's a bit alarming (to me)that you were started on such a high dose. Typically patients are asked to start smaller and build up, to help avoid any big reactions. When I started I started at 10 mg daily for a week, then 20. We stopped the increase at the point of stabilization, then quickly went to every other day to help avoid side effects.

It seems to have worked, as I had fairly minimal issues with any of the side effects, except the psyche symptoms (depression, irritability, insomnia) that happen at anything over 20 mg for me. I have been up as high as 60mg and that was pretty awful (yet necessary due to my symptoms). Thankfully that was 12 years ago and I haven't been up that high since (but I've added other meds!).

You will probably feel lots better by the middle of the week, especially with the IVIG. Be doubly sure to drink lots of fluids, as the combo of steroids and IVIG will take a toll on your body. Be gentle with yourself, and talk to your infusion nurse or doctor if you have any other questions or problems.

Thank yall so much for your replies!!
4 eyes- I like that idea of starting low and going up!!!
His original RX was for 60 mg x 2 days, 40mg x 2 and 20mg x 2 days..
My heart rate was up in the 150's after taking the 60mg.. i felt like I was going to kill over- sweating and everything!! (is that normal??) I couldn't bare to do that again.. didn't have the extreme effects with the 40mg..

I have been "sick" x 16 or so months and been on IVIG every 2 weeks, but if I get sick with something, hormones or just no reason at all get a flare up of my weakness he wanted to see if maybe a few days of steroids would help bridge the gap between IVIG's in these instances.... I wasn't sure if 6 days was even enough to make a difference, but since we have never tried them at all.. thought I would go ahead and try! They are talking about Imuran as a possibility, but I have two small kids (petri dishes they are!! and I work around sick people.. soooo ANY form of immunosuppresant, including steroids makes me nervous!

Do yall think this short few days could even potentially help, or is it just enough time to experience the initial weakness from them and no benefit! ugh!

There are times after my IVIG kicks in that I feel ALMOST normal.. and times where I feel 100 years old and I can barely put one foot in front of the other.. it's amazing how variable it can be!

I"m glad to know that it's not abnormal to feel the initial weakness...I hope that this short burst of steroids will help.. I will be sure to extra hydrate for my IVIG as well (at least the prednisone is helping a bit with the IVIG eczema rash I get, So, that part is nice I guess!!)

Hi bny,

I am sorry, but I don't see how that short course of steroids will bring much lasting relief. Maybe for a few days/weeks, but not exactly what you aiming for, huh? He gave you a very strange protocol, compared to how most take steroids.

Are you confident about your doctor? Are you able to discuss things with him? If so, maybe you need to have a little talk about exactly what his/your goals are concerning steroids. My neuro is one who listens and I would be totally comfortable asking if I could try a different way if this time doesn't work the way you want.

The increased heartrate and sweating were also normal. The pred put you in an artificial "flight or fight" response. People with MS often receive 4 days in a row of 1000 mgs of IV steroids for their flares....can you even imagine? They, thankfully, also receive stuff like ativan and sleeping meds with theirs.

Hang in there! Drink water!

Thanks so much!!!
I can't even imagine IV steriods and a higher dose - IIICK! I was trying to work and felt so awful!!
The dr seems knowledgeable for the most part... but I gotta say i don't feel "comfortable" with them completely.. At first I think they thought I was just an over tired stressed Mom who works and that's why i was "weak" haha.. I wished that was the cause!!! Once I crashed almost a year ago now their opinion seemed to quickly change and they initiated IVIG..THANK GOODNESS!!
I still feel like the fact that I appear normal enough, that they aren't too concerned.. I debate in my head at times- should I push for more treatment to try to be more normal - get as close as I could get to feeling 32 years old, or just settle and be happy that I am SOO much better than I was and just stick with the IVIG.. I fear other treatments making me worse- getting septic or something with immunosuppresants etc.. I do wish I could find a Dr that I felt truely comfortable with and could really talk with and they could understand, however I think since they aren't walking in my shoes they will never fully understand...

My dr had just wanted to use the burst steriods to see if it could be a breakthrough treatment when I had a flare.. It has at least dramatically helped my nasty cough! So that part is good! Now IVIG on thursday.. My speech gets slurred and swallowing about 10 days after IVIG.. it gradually worsens until about the 2nd day after IVIG, then I'm pretty darn good again. My poor veins are getting tender from doing this for almost a year though!