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Thread: alternative treatment of ITP (Win RHO)

  1. #1
    Healthcare Professional
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    May 2003
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    3

    alternative treatment of ITP (Win RHO)

    looking for info regarding anyone's experience in treating a patient diagnosed with ITP. Standard treatment of prednisone administered x 2 mos. Pt presently being weaned off prednisone, we're looking at Win Rho as an alternative. Any info would be appreciatec. Have a great day!!

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  3. #2
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    Feb 2007
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    4

    Itp

    My daughter has been diagnosed with ITP. She is 11 yrs old. She has taken the steriod treatment twice and is now on her 2nd Win Rho. Could you tell me if you are concerned with an adult or child in your question. If a child what is thier age and what is the last vaccination that they have gotten. So far nothing has corrected the problem only given her short periods of higher plateletes. I am trying to research every possible way for my daughter. It is really scary but trusting my Pediatrician is what I have to do to keep myself in tact.Please respond!!!!!

  4. #3
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    Feb 2008
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    Exclamation research carefully

    My 59 yearold father was give Winrho on Valentines day to get his blood platelets up because he needed a "simple" heart valve replacement and his count was very low (16,000). Thirty minutes after having the transfusion he was in so much pain he could not move or use the muscles in his arms or legs. He was rushed to the emergency room and given a pain medication and muscle relaxers to help him "deal" with the discomforts. Told by the blood specialist that administered it that it would be about five days for it to get thru his system and for the pain to be gone. The following Monday at 8:30 A.M. he returned to have blood work done to check the results of the Winrho. His platelet count had actually dropped. He began having chest pains and shortness of breath while still at the Dr.s office. He was rushed to the emergency room yet again where he passed away at 4:36 P.M. In reading the pamphlet that he was given regarding the side affects of Winrho there were several RARE side affects listed. He experienced all but two of them. Extreme Muscle pain, yellowing of the skin, blood in his urine and several others that I can't recall. Granted he had issues that needed to be delt with quickly and the blood specialist thought this was the best way to do so, but I am not convinced that with the pain and strain it caused on all of his other muscles, that it did not futher damage his heart (a large muscle) which resulted in his death. Weigh your options and do more research before taking the Winrho.

  5. #4
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    Feb 2007
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    Unhappy Itp

    My 12 year old has ITP we have been going through it all for about 1 year and a half. She has had about every treatment short of having her spleen removed although it is has gone away we have found a temporary way of giving her longer stability. If you have any questions feel free to email me I would love to help someone else that is unsure like I was 1 year and a half ago.

  6. #5
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    Feb 2007
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    My daughter had just gotten a state mandatory vaccination called adacel (dtap) we believe this is the cause. However she has been through it all with her platelets dropping to critical every 7 to 10 days. I have made her get the iv drip, winrho, but after about a year I found a great pediactric hemo that decided to shock her body with short quick dosages of steriods now she had steriods at first but a longer and less dosage which did not help long. However this is a 28 pills a day of 10 Ml each for four straight days. Of coarse she had to take pepcid with it. But this has given her months at a time it got to one point that we thought it was over but no such luck. However what seems to bring it back is any virus or sickness in her or my household. Did your daughter get the 6th grade vac, Please contact me some how. I am on aol. my mail is tiffntabb

  7. #6
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    Feb 2007
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    My daughter has tried it all. IVIG and winrho. Please be really careful with winrho make sure they take about 8 hours and take benedryl first do not let the doctors rush the treatment. But to let you know these things seem to be bandaids not treatments. My daughter ended back on steriods but a large dosage for a quick time 4 days 280 ml a day 4 pills every 4 hours of 10 ml this did not sure but gives her longer with high counts and usually a virus brings it back. Not sure the cure but hope there eventually will be one. Good Luck.

  8. #7
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    Feb 2008
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    My dad got his Winrho treatment in less than an hour. I think that is one of the reasons he had such terrible reaction. They had told him it would take three hours and he was done in 45 min.

  9. #8
    Professional
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    Feb 2008
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    98
    TO HROUSE: Find out if the winrho treatment was within the range of "standard, and customary treatments" for the area you were in. (I think you may also add "normal and customary for persons that are only no-blood patients as well"). Your father's insurance may not have paid the bill entirely if it wasn't the standard, as they usually go by this when paying insurance bills. If it wasn't, depending upon your state, from the time you find out about the fraud, you have a certain amount of time to be able to bring a cause of action-whicn may pay the bills they caused your Father. Your state Medical Assurance Board would be able to tell you if your Father's treatment was customary for the type of patient he was-look it up on the internet. They may require you to go through Consumer Complaints to make an inquiry. Hope your family is recovering from the devastation. To put your Father in so much pain when it may not needed to have been that way is inexcusable if they weren't following proper procedure. More persons that are no-blood patients need to report any questionable treatment to their Medical Boards to make sure they are documented. Go to your State Medical Board Meetings as a group so you can regularly report and bring them up to date as to what problems are taking place. Don't just let yourself become statistics for research, which is where no-blood
    therapies are at-they are not accepted by everyone-everywhere. Yes, they are giving hope to persons of all belief structures to not use others' blood, but this period is like a trial of
    what the products can and can't do-at everyone who is accepting the products expense. In California State Universities we are taught that any research takes 100 years to prove it's point. It hasn't been very long since no-blood alternatives have been used. 21stCentury.endmessage.

  10. #9
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    Jul 2008
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    1

    Shocking results regarding Win RHO

    I went into shock after Win RHO. I was 59 years old. I am a male with type II diabetes.

  11. #10
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    Jul 2012
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    1
    Thank you for posting information about WinRho® SDF.

    As Cangene Corporation is the manufacturer of WinRho® SDF we would like to request further information regarding the adverse events following the administration of WinRho® SDF.

    Please be assured that under 21 Code of Federal Regulations, Chapter 1, Sec 600.80, and other international regulations, the information disclosed concerning the reporter (that is, you) and the patient is kept confidential. “The names of patients, health care professionals, hospitals and geographical identifiers in adverse event experience reports are not releasable to the public under FDA’s public information regulations.”

    As well, HIPAA regulations “permits covered entities to disclose protected health information, without authorization, to such persons or entities for public health activities such as … quality, safety or effectiveness of a product or activity regulated by the FDA. Covered entities may disclose protected health information to a person subject to FDA jurisdiction, for public health purposes related to the quality, safety or effectiveness of an FDA-regulated product which may include, but not limited to: collecting or reporting adverse events … and conducting post marketing surveillance.”

    May I please request your correspondence at the following email address: Pharmacovigilance@cangene.com or please call our 24 hour adverse event phone number toll free at 1-800-768-2304. We value any information you can provide, as it contributes to the tracking of patient safety data. Thank you for your time and attention to this matter. We look forward to hearing from you.

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