WinRoe

Well, 2 months ago, my 22 year old son had the Winroe and his platelets were never higher, they finally were 187! Soooo, the doctor actually let him off from weekly testing for 3 weeks, then they were in the 40's and have fluctuated between 22-46 up unto yesterday. Yesterday his platetes were only 5(ugh!), the doctor said we will do the winroe again since it gave him 2 months before, so he went to the hospital early today and had the treatment for several hours. I have to mention that my son was totally TICKED that this is happening when he feels fine and was about to refuse anymore treatment(but we all told him the results could be devastating if he did not get treated) and so he cooled off and went. He went right to work after the treatment, he never has missed ANY work at the police department(he is still on probation and will not let interfere with his job), so the only way he will get any treatment is under his terms that it has to be when he is either off or off shift hours, and bless his heart, he goes right to work and works through any side affects.

I am probably rambling, but the splenectomy has been mentioned, but my son refuses to get it done because he doesnt want to lose time away from work due to this ITP.

I have to mention, that if any of you have son's that like to take supplements for working out, THIS IS WHAT WE THINK CAUSED HIS ITP. It is the only thing that could have caused it since within 2 weeks of taking these supplements he ordered on line, he started with the massive bruising.

He also gets a lot of cellulitus infections and has to either get I'V antibiotics or oral antibiotics if caught early.

We also noticed that if he has a cold(which he seems to get a lot of now), his platelets seem to drop under 10.

Just things we have noticed since he was diagnosed 9 months ago.

So, the treatments he has had:

IVG
Platelets
200mg day for 2 months of prednisone
Rituxan
Winroe x2

Thought I would say something about his journey lately

Good for him for keeping his life as normal as possible! I'm glad he responds so well to Win-Rho.

How about Nplate or Promacta before splenectomy which isn't a sure bet for curing ITP? I would also suggest to your son to try these. Only roughyly half of patients that have their spleen removed go into remission and that doesn't mean they stay either. Also once your spleen is removed there are some treatments that can't be used and your more prone to infections and the severity. My daughter starts Promacta in the next couple of weeks but has tried 2 different steroids, IVIG and WinRho with no luck with her numbers. Good luck with his decision.

After this second round of Winhro, his platelets went from 5 to 286 after a week! Never has it been that high. So, guess we monitor for a while and see how he does. I know there are other avenues before a splenectomy(which he doesnt want), but for now, the Winro buys him time and seems to be working for him for the time being.

That's great! Win-Rho can be a good way to manage ITP if there are no side effects getting in the way. Some people used to end up being able to spread them out to only a few treatments a year. Not a bad way to go!

Sandi,

What side effects do you know of with the Winroe? The first round he had, his joints ached(but he still worked his shift right after the treatment), he said he toughed it out. The second round he had and then went right to his shift, he said he had no side affects. Are there other side affects?

Side effects can be non-existent or very severe:

www.drugs.com/sfx/winrho-sdf-side-effects.html

well, I spoke too soon, his platelets were down to 46 last week(the week before was upper 200's), so we go tomorrow and see what they are, we have a feeling they may be low, he had 2 nose bleeds this week and seems very tired to us, but he wont admit it,ugh!