Update on Sofia and a Question

Hello everyone,

Sofia was diagnosed with ITP in early December 2011. She received an IVIG treatment which lasted for about 3 weeks and then her platlets started dropping significantly again. Most of Januray we were riding the roller coaster ride that you all know and understand with lots of bruises, petichae, anxiety and of course daily blood checks.

She received a Win Rho treatment on January 27th since 8 attempts of getting a transfusion line for IVIG had failed. While I was hestitant on the Win Rho- its seems to have worked well for Sofia. She has normal counts ever since with her last platelet count last week at 338K.

It's been about 11 weeks since her Win Rho treatment and the question "will it come back" continues to linger. She has had strep throat and a cold during this time and she dipped a little but still in the normal range. She has come back to more normal activities so she definatley gets bruises so it's hard to not get a pit in your stomach when you see them.

She got a fever last night (around 102) and the doctor thinks its viral. So of course I am a little worried that we may start this roller coaster again. Crossing my fingers that we don't. A few questions for you

1. Have any of you experienced an acute case of ITP where a new virus does not cause a relapse.

2. When do they consider a case to be in remission. Our hematologist said that we should again in May but after that only bring her in if she presents symptoms. She won't say the word remission yet- but she says it looks promising

I can't thank the people on this site enough. It's great to have a sounding board and to give a little advice when you can offer some perspective from your own experiences.

Appreciate the feedback.

All the best
Fran

Fran:

ITP does not always relapse if a child gets sick, but that is always a possibility. Some people experienced a rise in counts when they are sick. Some people also rebound without treatment.

ITP is considered to be in remission if a person is treatment free for 6 to 12 months and counts stay in the normal range. However, many people are happy with just staying over 50 (safe range) and consider that a remission.

Most treatments are temporary, so if a child maintains good counts for a long period of time, it could be a remission.

So if they have ITP then they will always have a chance of it coming back? My daughter was diagnoses in February, so this is something that we will always have to worry if it will come back?
Thanks

Yes, it can always come back. However, if a child has a good remission, I wouldn't spend time worrying about it.

My sister had ITP at the age of 16 (1982). After a year of treating with Prednisone off and on, she went into remission and has never had a recurrance. None of us spent time fretting over it and we just went on with life. If it reappears, you deal with it then. It is something that you should mention to new doctors and always report in medical records.

question about Winrho:

why are some people who post here leary about winrho as opposed to Ivig? whre my daughter is being treated, they do the winrho first (with 60 mg of prednisone to guard against a reaction to it) -- and only if winrho doesn't work do they move on to ivig.

My daughter, Mia, had ivig last night (600 cc's) and they took many more precautions with it -- vitals, benadryl, tylenol, 60 mg predinisone, etc -- than they did with winrho.

Just curious.
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I hope Sofia's numbers stay high!!
best,
Firkins

WinRho has a black box warning on it because it can cause intravascular haemolysis which can be fatal. IVIG can have nasty side effects but not fatal ones by and large.