Winroe?

Anyone know or have had the drug Winroe?

I have had Win-Rho. A few others have also. It's not as common as it used to be.

What did you want to know?

I had one IV in 2002 and have had lower than norm counts but decent ones and have not had to treat since.

My daughter who is 6 has had it twice now. The first time was 3 years ago and her platelets stayed low normal for a year. Then she had it again and it worked really well but didn last very long. Maybe 2 months. Still a break for her thouh :)The only thing I would suggest is pretreating with benadryl and tylenol. You can get a little shaky due to the infusion and also the fact that it causes some red blood cell destruction. But the benadryl takes care of that(sounds scary but isnt so bad) My daughter became mildly anemic for a very short time and actually felt fine. It's a very fast infusion which makes it nice and I think they only observe you for 8 hours after. Different at some hospitals but I know that is the recommended time. My daughter also had coca cola urine which they said was normal due to the red blood cell loss. That only lasted a few hours. I just wanted to let you know about the shakes adn the urine because the first time it freaked me out terribly but each treatment has its downfall. If it still worked like it did the first time it would be my choice because its the fastest easiest and seems to have less side effects or a shorter duration of side effects than ivig or prednisone for my daughter. Everyones different though. Some people dont get shakes and never would have known they had the infusion

I had it once. It had no effect on my platelets at all. I wasn't pretreated with anything except for a saline drip for a while before and after. I had no side effects except the usual red urine for a couple of days. And my haemaglobin fell from 13 to 11. It recovered to 12 a while later but has never got back to 13 which made me regret doing it at all.

WinRho was the first treatment they gave my daughter, 8 years ago, when she was diagnosed at 5k. When I asked about any side effects, they told me there were virtually none and very mild. They gave her Tylenol and Benadryl and observed us for 30-40 minutes before sending us home. (it was after midnight). We had been in the hospital since morning and hadn't been allowed to eat, so stopped at a diner. It was there that my daughter began violently vomiting. After trying to take her first bite of food, she found she couldn't swallow. In seconds she grabbed her throat and mouthed "I can't breathe!". She was panicked looking and was completely white, drained of all color! Within seconds she was slumped in the booth, unconscious. I knew she was having an anaphylactic shock reaction at that point. This was the days before everyone had cell phones, so I somehow scooped her up and ran with her to our van, driving like crazy, the few blocks to our home. I had been studying homeopathy for years, and a remedy for anaphylaxis had stuck in my mind, even though I had never seen it before. I ran in and grabbed my vial of Apis, a remedy made from the bumblebee (which of course can also cause anaphylaxis.). My daughter was unresponsive so I slipped a few granules under her tongue as they are absorbed sublingually. Within 1 minute or less she began breathing and responding. I gave her another dose in a few minutes. Within 5 minutes she could walk with my help into the house.

She began violently vomiting, which continued through the night. This is the first I have heard that WinRho destroys the red blood cells, but that explains why she was peeing 'CocaCola" and her vomit looked like coffee grounds. I knew from my pathology class that these were both signs of bleeding in the gastrointestinal tract. I has just always thought that was the sole result of the ITP--I had not related it as a side effect of WinRho. When I called the ER to see if I should bring her back, I was told that there was nothing else they could do for her at that point, and it was just because of her ITP. All they would do is monitor her. Since it had taken them 12 hours before doing anything the first time, we decided to monitor her at home, rather than force her to endure another car trip.

After all of that, the WinRho didn't even raise her platelets more than a few points. They gave it to her one more time, this with additional pretreatments. Still, while she didn't have the anaphylaxis this time, she was just as violently ill. Still did nothing for her counts. So, no, I wouldn't recommend this treatment from our experience.

BTW, she had one further anaphylaxis episode with IVIG, when a new nurse did not pretreat her properly. This time she was during the infusion, when the same thing happened. Her blood pressure bottomed out within a minute. I almost lost her. It seemed like forever for the nurse to get the sterile Epi pen open. My daughter was unconscious for over an hour this time and she described it as being the most painful thing she'd ever felt, when she finally came to. Clearly, the homeopathic Apis acted more quickly and better than the Epi pen.

Fortunately, we refused any further infusions after that. I finally found the right homeopathic remedy for her, and her platelets went from 11k to 411k in less than 4 days! And, best thing is, she began feeling incredibly better within hours of taking the remedy, even before it was reflected in her platelets. Next month will be 8 years since her diagnosis. With her only treatment being her constitutional homeopathic remedy, her counts have remained in the mid to high 300's.

April

It was also my son's first treatment (17 months old) the treatment was started at 2am and he was pre-treated, so he slept alot anyway, but he seemed just fine when woke up, had energy smiles nothing in urine..It did make him anemic, and did not raise his platelets much, first check he was in 20's, hours later down to 11. We than tried IVIG...Sooo 6 weeks later (all other treatments failed all counts great again) we tried again, again he seemed to handle it fine, however his count went from 0-3..So tolerated well, but no results

Some people do well with Win-Rho and can attain a rise in counts that last for a while.

I had six treatments (five of which were a waste since I didn't get any rise in counts). I didn't have any intolerable side effects. I just had a 5 minute IV push, no pre-meds, given on my lunch hour. I went back to work afterwards. I felt a little flu-like, but some Tylenol took care of it and I was fine.

These days, they are a lot more cautious with the drug.

Had Win-Rho four years ago with my first battle with ITP. Responded well to it and had a four year remission after my first treatment. Side effects for me were mild. Day after treatment I felt like I had jet lag and I did have urine discoloration. My new hemo was actually on the team that made the drug and he has it kind of low on his treatment option list as he thinks there are better alternatives with lower risks now.

what is the homeopathic treatment?

Homeopathic treatment is individual and specific to each patient. Homeopaths say, "We don't treat the disease. We treat the patient who has a disease. ". IOW, the homeopath tries to understand the entire constellation of symptoms that defines that person. The most unique and characteristic symptoms are the most useful. How is THIS person different from all the other ITP patients? Once that is understood, it is matched to some substance in nature which has been shown (through clinical trials called "provings"), to produce these similar symptoms when taken by a healthy person. This can be challenging, as there are literally thousands of remedies to choose from, so it needs to be narrowed down to one specific remedy. Most people will respond to a remedy if at least part of a remedy matches. But, for complete cure, the best remedy needs to be given. The remedies are prepared in a special way, through serial dilutions and succussions. This process, called 'potentization', can make a toxic or poisonous substance safe to ingest and medicinal. Likewise, it can make an inert substance, one like table salt, into a powerful medicine. Any substance in nature can be made into a homeopathic remedy--from an animal, mineral, plant, radiation, gasses, rare earth metals, bacteria and even diseased tissue! All of these have been used to cure people from ITP and other diseases. It takes someone experienced and knowledgeable to narrow down the choices. Homeopathy can be used successfully by nearly everyone in minor acutes and injuries. But, for ITP or other serious ailments, consultation with an experienced homeopath is necessary.

Just for curiosity's sake, the remedy that cured my daughter is known as Hepar sulphuris calcareum. It was made by Samuel Hahnemann, the founder of homeopathy, by heating sulphur and calcium together at a very high heat.

Homeopathy is completely safe, non-toxic and without side effects, if taken according to homeopathic principles. I fl it is a very viable option with virtually no risk, relatively low cost, pleasant to take and has a good rate of success. Plus, rather than side effects, it actually provides side benefits! That's because, like I said earlier, it treats the entire person and not just one tiny aspect of that person. We are so much more than our platelets!


Good luck with your child!
April

so,how does one find someone nearby who does this?

I had it a few times over about an 18 month period. For me, the day of the infusion I have flu like symptoms for about 4 hours and am a bit tired the next day, but it gave me 8-12 weeks before I had to treat again. Then I stabalized back at my 50-60K normal and haven't treated in almost a year.

I'm not a good candidate for steriods. Of course the black label warning was released after I started treating. And it's expensive, if you don't have good insurance. As Sandi says, we don't hear as many discuss it much recently, maybe docs may be starting with the newer drugs now they have a better track record.

Sorry, debrasia, I just saw your question about finding a homeopath. Ask everyone around you for a personal referral, first. Inquire at health food stores or co-ops, check their bulletin boards or ads in their newsletters. Places where people go for more holistic or natural treatments or activities may be good sources to learn of a good homeopath. (Yoga or Pilates studios, nutritionists, acupuncturists, chiropractors, gyms, health fairs, etc )

Do a google search by putting in, "Homeopaths in Your City" (Be sure and also do a search using the names of nearby suburbs or neighborhoods).

There are some organizations, like the National Center for Homeopathy (NCH), that maintain lists of homeopaths by state. (Sorry, I can't recall their website address right now).
There's a site called www.impossiblecure.com that is geared towards helping those on the autistism spectrum, that has referrals to homeopaths by state. (almost all treat a wide variety of conditions, though a few may specialize strictly in autism). Btw, the mother who started this site found homeopathy recovered her young son completely from autism. A former Phd Research Scientist, she wrote one of the best overviews of homeopathy in a book by the same name, Impossible Cure, by Amy Lansky. I highly recommend it for anyone who wishes to try homeopathy, or for skeptical family members. She gives the history of, the premise behind how it works, research studies, case histories and cures, what happens in an interview, etc. It's all interwoven within the story of her family's journey with finding help for their son. It's a beautifully written book and compelling to read. It's applicable to everyone and not just those with autism.

If you tell me where you are, and what area of the state or what larger cities you are near, I may know of a colleague to refer you to.

If you can't find anyone suitable in your area, you could either drive or vacation to an area where there is one. It's the first interview that is most important to do in person. Follow ups can usually be done by Skype or phone.
If that's not possible, most homeopaths will also do consults by Skype or phone, utilizing written medical histories, photos and videos, as well. I have found these to work almost as effectively as in person interviews.

Wherever you find some possible leads, be sure and talk to the homeopath first and find one you feel comfortable with. Make sure that homeopathy is the prime or only healing modality that they use. You want a specialist who understands homeopathy deeply and not someone who has just taken a short course or two or read a few books. Acute illnesses and injuries can easily be treated by almost anyone with some basic homeopathic knowledge. But, constitutional treatment, which ITP requires, needs to be done by an experienced homeopath.

Homeopathy stands alone. While supplements, vitamins and special diets won't usually interfere with it, they are usually not necessary, either, unless there are true deficiencies. If these seem to be a big focus of the practitioner you find, you might want to look for someone else who bills themselves as primarily a homeopath. Chiropractors and Naturopaths tend to fall into this supplement-loving category (and very often sell them to you, as well). There are always exceptions of course, but most of the time when I hear someone say that they tried homeopathy and it didn't work, it's because they're talking about naturopathic, not homeopathic care. The terms are misused all the time. Also, even when working with a good practitioner, it may take some wait and see time and trying a few different remedies to hit upon just the right one. Don't give up too soon.

Good luck!
April