worriedmommy Posted April 30, 2010 Report Posted April 30, 2010 Dd6 did a 5 day prednisone burst 4/21/10-4/25/10, during which time we did saw very minimal improvement in her tics and her mood was TERRIBLE. However, 2 days after ending the burst we saw a fairly dramatic improvement, which has continued to today. Her mood is fantastic, many fears seem to be gone, and her tics are at an all time low. They're not gone, but SOOOOO much better. She's having tic free periods of 30+ minutes at times. My understanding was that any affect from a prednisone burst will go away and PANDAS symptoms usually come back with a vengence. Is this true in all cases? Do they come back as quick as they went away or slowly?
dcmom Posted April 30, 2010 Report Posted April 30, 2010 Worriedmommy- I am glad you are getting a little relief. I am a HUGE fan of the use of steroids as treatment/management for pandas, not just a diagnostic tool. We have had several different reactions to steroids with my two daughters. I think it came down to where they were at time of burst, healthwise, and what happened post burst, healthwise, also. My doc prescribes a month long, tapering, dose. The doc has talked about treating pandas flares as you would treat an asthma flare. NO steroids are not for long term use, but I think a few bursts a year for a couple years is probably reasonable. During the tapering dose, at the dosage level for the last two weeks - it is so low there are no side affects at that level. I don't believe the steroid has ever worsened our situation in the long run- but we have seen a complete deterioration post burst, rather quickly, to pre burst levels. And then a continued worsening. But, we have also seen a burst provide immediate and lasting relief. I would continue following with 2 weeks of ibuprofin dosing to try to avoid backlash inflammation. I hope you get the long term relief...
momaine Posted April 30, 2010 Report Posted April 30, 2010 It has taken any where from 7-13 days for a prednisone burst to kick in for my dd and they have lasted anywhere from 5 days (at the lower dose) to 3 weeeks (at a higher dose). She is 13 yo, 100lbs now and her higher dose was 40mg. It seemed to me that she improved slightly for a couple days then had a middle time of GREAT days then slowly deteriorated again, each time. (but by slowly, I mean over the course of two day it got progressively better..then great days in middle, then progressively worse over two days then back to horrible again.) Prednisone has been a life saver for my family. It makes me know that if we can get the inflammation under control that my dd will be herself again, as she is while the prednisone is working. It has also given her hope. It definitely is worth the risk to me to have those days of sanity interspersed with all the craziness. Angela
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