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Has anyone had experience with pulsing solumedrol at 5mg/kg? For my DS, that equals 300mg via IV along with his low dose IVIg he receives every two weeks. Ibuprofen does nothing for him. He needs some relief but I've no idea what to expect 300mg at one time will do. We had some gains on an oral pred burst at 60mg per day for a week last year and has only had 10mg solumedrol with his IVIg since then (mainly just to ward off immediate IVIg headaches, etc). This is beginning this week. I want to see great things from it but naturally am a little anxious about it.

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  • 6 months later...

Hi KLW,

I am curious how your DS is doing? Better I hope! My DS (age 9 - diagnosed this past Fall) has just finished his second set of three high dose Solumedrol infusions. This was the first thing that brought him any improvement (we saw him get approx 1/3 to his baseline approx a week after completing the first set of three infusions). We then waited 3 weeks and have just finished another set of three Solumedrol infusions (I don't know what the dosage is, but it is "high dose" and he weighs 95 pounds). I can only hope this round brings him further improvement. He is also on Plaquinil to try to keep his immune system calmed down. We are being treated at Stanford. I ask all this not only to see how the Solumedrol did for you, but with any guidance on you would compare it to the IVIG? It seems that at this time, the Stanford doctors are preferring to go with the Solumedrol pulses plus Plaquinil before trying IVIG (for kids for whom antiobiotics alone did not do enough). This is different from what I read about at places on the east coast, chicago and seattle, where I still hear more about IVIG as the second line treatment to antibiotics.

 

The side effects of all these steriods are not fun. We are desperate to get our son better. I hope yours is.

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