IV steroid

[MVPansMom]

We have just finished our first day of IV steroids.  I am so nervous about the side effects given that we are finally in a place with no aggression and/rages.  I am wondering how long it takes the side effects to kick in.  How bad does it get?  And how long will it last?

 

[MC2]

H there,

We have been doing 5 months worth of high dose Solumedrol for our son. The first two months worth it was three days in a row (since then only 1 day, spaced by 4 weeks).  The main side effects we have had: exhaustion for the first few days (but weird exhaustion where you also have underlying restlessness), no appetite first 2 days but then moving to huge appetite for salty chip type stuff, puffy face, weight gain, grumpiness (note, we push benadryl for first 2 days after infusion b/c son gets red cheeks and weird stomach pain, which were deemed an allergic reaction, but this also makes him sleepy (Benadryl totally fine to give, per our doctors and we use it every night for last several months due to sleep issues - we had these all along but the steriods are known to make worse) . That all sounds pretty bad BUT, the steriods have been the single thing that got us vast improvement. Usually we saw the improvement start on day 6 or so (believe me I remember waiting - it is awful). The weird thing is that the improvement is a bit bumpy, not a straight line up... it is good over time to think back over weeks and months not back over days.  I think by about week 3 post-infusion, we always have gotten the best of both worlds: bad side effects disappearing, benefits all there, but then by week 4 we have always been back in for another infusion. We are doing this protocol for 6 months, so we will see if it "holds" after we stop infusions. Fingers crossed. Note our son (age 10) is also on Plaquenil which is supposed to help hold the effects of the solumedrol. Hoping for the best for all these kids.