WinRo

Okay so although my counts have not fallen to a really low level 20 being the lowest!!! Last week my counts were 27 pretty good but I had blood in my bowels so my doctor suggested a treatment anyways. I do outpatient treatments. I have only had one other treatment since the diagnosis is Nov after being in remission for 17 years. The first treatment I had was IVIG which worked well for 4 weeks counts went all the way to 260 and then started to fall. However the side affects for me were awful. SO this time we disscussed WinRO. I tried it and lets say its been a problem ever since. They did the infusion and it only took 15 mins. about 2.5 hrs after recieving it I had really bad lower back pain, chills and blood in my urine. I know all side affects they ended up letting my go home after 6 hours. but ever since the infusion my urine has not been right. In the morning it is a orange color and i never had this problem before. I did a urine sample and everything came back fine.. Why is his happening? I did not have as high of numbers either with the WinRo

It's normal. It's the way that WinRho works. It tags the red cells for destruction causing them to crowd out the spleen so that the platelets are left alone. The red cells are then destroyed with the products overflowing into the kidneys and the urine appearing coloured. I don't remember how long that lasted for me but it was certainly several days.

Thank u i was worried cause it has been a week and a half but i feel much better!

Our Doctor just treats our 23 year old son with WinRo. He has had 2 treatments with Winro and we have decided that since my son doesnt have any symptoms when his platelets are low, that his "normal range" is considered 8000 and above and when they get below 8000, he gets another treatment. He wont get his spleen removed and other then going for weekly or every other week for his blood count, this is what is working for him and the doctor suggested trying this out and seeing how it goes.


Prior to the WinRo, he did have all other forms of treatment, but now his normal range is usually in the teens

well this is a scratch of my list of possible treatments.. IT has not only made me still pee blood still and it has been just over 2 weeks. My counts are also really low again.. My hemaglobin has also dropped into the 7.3 range and will not come back up! glad is over!