What to expect from Steroid Burst?

[MissionMama]

Hi All,

 

So....here we go. The idea for improvement and restored health actually makes me feel a physical sense of nausea. I feel like there is so much too gain, and even more to lose? What if we don't get the response everyone is hoping/expecting??

 

DS 11 entered first debilitating exacerbation on 10/25....21 day course of abx completed 11/28...by 11/30 symptoms started returning (OCD, mood swings, oppositional behavior, etc). By 12/1 it was unmistakenly familiar! Started prednisone this AM.... 60mg for 5 days (Dr. K recommended 40mg, but our immuno bumped it up to the 60mg...not sure why). This was all according to our treatment plan...but we had the 5 day window between finishing the abx and steroids because of doing the blood draw for the Cunningham Panel (immuno decided we should do this after DS had some elevated antineuronals on his test and screwed up CBC* test). Anyway, clearly the abx were doing a lot of good - I think we took it for granted as the improvement seemed slow...but then wham!

 

What should we expect in the way of side affects from the prednisone? How soon? How long? When did any of you see positive results? Any other thoughts? Input?

 

Thanks to all....

Kristi (on a) MissionMama

 

*low WBC, platelets, and hematocrit, concern over reactive lymphocytes which were abnormal, and low ANC....

[qannie47]

For my ds, he tolerated the 5 day burst very well. Saw a calm almost immediately. A few days after finishing, we saw some mild facial tics appear. This lasted about 2 weeks, and then completely went away. He is doing extremely well. Other then that, I did not experience any other side effects.

[LNN]

Because symptoms started returning when you finished abx, there may still be an underlying infection. If this is the case, the response to prednisone may either not be what you hope for, or may not last. Remission generally doesn't happen until the infection is gone. But if the infection is gone and you're just needing to address inflammation, you might see improvement within days or sometimes weeks. Everyone is a little different.

 

Without over-analyzing it, keep a symptom chart if you haven't started one already. You can even go back to Oct and make a reasonable guess at daily symptoms from that point forward (use your old posts on this forum or emails to friends as a kind of diary to help with recall). In Excel, list the dates in a row. Then in Column A, list 1-5 symptoms (e.g. tics, OCD, adhd, handwriting etc). Not too many, just the major ones that you're using to judge good days vs. bad days. Under each day, rate the symptom (1=good, 10=worst). Then graph the past month plus the coming weeks. It will give you a visual of how your son did on abx, off abx and now on prednisone. It really helps the docs quickly assess things without having to follow a long narrative. You can also use text boxes or write in by hand any events on a particular day that may have caused a spike or improvement (e.g. above the 12/3 bar in the chart, write "started prednisone")