Starting WinRho in 2 Days- advise please!

I am starting WinRho in 2 days. ( 35 units) My platelet last week was 25. I have no symptoms, I don't bleed ect. Doc has been trying to get me to try this drug for 2 years, I finally agreed. I am very scared because of all the warnings out there.

My question is this ; Everywhere I read up on this treatment it says to monitor the patient (me) for 4 to 8 hours. However my doctor said I don't need to be monitored. What should I do? Go home after treatment and cross my fingers or insist that I stay and be monitored.

Any advice? Anyone doing WinRho as treatment now?

Last question Does it cause weight gain ?

"tamar" and "winnifred" have both used WinRho successfully. Don't expect a remission, but it will get your platelets up fast, often faster than IVIg.

The black box warning is very clear. I would not use WinRho without monitoring, especially the first time. And, I would be very nervous about a doctor who suggested otherwise.

Have you considered not treating unless you have symptoms? If your counts do not get low enough to cause symptoms, you might try watchful waiting, also known as "watch and wait". It is pretty much the standard treatment for children, but can also be used with adults.
Read more here: pdsa.org/forum-sp-534/13-general-discussion-for-parents/29152-watch-and-wait-what-does-it-mean.html#54301

I too used WinRho successfully - I refused prednisone when my count hit the gutter so she gave me WinRho - had 1 IV of it in Sept 2002 and have had decent [not normal range] counts since.

I had no side effects at all from it. Last year my new hematologist said if I had WinRho again it would be given and then I'd have to stay for a while [can't remember how long though] to be watched.

I think it was a week later that I had to have blood work to see if my count had gone up - can't remember exactly since it was almost exactly 14 years ago. It did the trick though and I didn't have to have another treatment.

Guess I would tell my hematologist I want to be monitored/watched after it since that seems to be the norm now.

I assume you are in the US or Canada?

As Rob said, lots take a wait and see approach if there are no symptoms - me, I'm just not comfortable with a count that's real low.

Nope - it does not cause weight gain.

Win-Rho experiences can be different for everyone. Some have no problems at all and some do.

I had five weekly treatments of Win-Rho back in the late 90's. Back then, they gave it as a five minute IV push and let you go on your way. I had it during my lunch hour and went back to work. I felt flu-like, but took Tylenol and it helped. Win-Rho never raised my count at all. I'm not sure why I had five treatments; if it didn't work the first time, it wasn't going to work.

Since then, the black box warnings have come out since some people have had serious reactions. The problem is that the reactions hit fast and can be serious. Personally, I'd rather be safe than sorry if you've never had it before.

Have your counts been in that range for a while?

My count ranges from 18 at its lowest to 35. One time it went up to 80 but we don't know why.

Thanks everyone. I am going to tell Doc that I want to stay there and be watched. He wanted to do it this Thursday but when I looked at the calendar and saw it was a holiday weekend so I changed my appointment to Tues. ( in case I have a bad reaction I don't want to go through a weekend without my doctor or spend it in the ER).- Yikes. Can you tell i am very nervous about the whole thing.

I will update after my treatment. -
Thanks to all again!!!

I m in the US. Doctor wants me to start because I am traveling.

He doesn't treat me unless my count goes to 18 ( because I was traveling every month). I thought that I was going to be away for 3 months in Sept so thats why this came up again. Turns out that I am only going to be away for a week , but I do want to give it a try ( even though I am scared of pumping something through my body ) .
I wish they had a "reaction type of test" that they would do first. He is giving me 35 Units ( don't know if that is high or low?

- thanks for you help!

I just read the link that Rob posted for me. Now I think i am going to have him check my count on Tuesday and if it is 20 or lower I will have him do it. ( my last count was 20). If it is higher than i will have him put it back in cooling and wait.

thanks Rob

that makes me feel better thanks!

Sandi had mentioned an "IV push" --- I am not in the medical field I'm just a patient but I do have an opinion on a 5 minute IV push, and I do not even know if they would still do a push. My WinRho IV probably took an hour or hour and a 1/2.

To me pumping something foreign into the body so quickly just isn't a good idea - it is shocking the body! That's just my opinion and I would never allow a push be given to me.

Sorry for the confusion - its not a push . It will take a hour or so. I just meant putting it in my body, not they way or time they put it in.

- They don't do the pushes anymore, that was a long time ago. It was right when I was diagnosed and what did I know then? All it was, was a large syringe that was pushed slowly into a vein in my hand over 3 to 5 minutes. It wasn't what you'd typically think an IV is...bag hung with slow drip into vein, but it was an "IV" in that it was intravenously administered.

I used WinRho about 6-8 years ago. My treatment started before the black box warnings came out.

My first treatment took 2-3 hours because they were ultra cautious the first time and it is a blood product. They started an IV with Benedryl, then small doses of two different IV steriods, then the needle of Winrho in a saline slow drip and they wanted me to have someone to take me home. Afte they determined I didn't have a reaction, they started reducing the other drugs. By my last infusion, I only did half a dose of benedryl and a 15 minute drip of the Winrho. I did find if they pushed too fast, I'd be a little clammy and shaky, but all I had to do was say so and they would slow the drip. I'd be in the Dr office less than 30 minutes in total. I'd request the last appt of the day, leave work a little early and do it on the way home.

Like Sandi, I had flu like symptoms for about 4 hours afterward. Headache, chills, etc. and moved a little slow the next day. Since I only needed it every 8 to 12 weeks, I didn't feel like that was too much to deal with. I just planned a nap on the sofa with my blanket and hot soup. I did it for 12 to 18 months, then my platelets went up and I no longer needed to treat. Unfortunately after a remission of 18 months, it didn't work for me the second round and I moved to Promacta.

The black box warning came out after I'd been doing it for several months. I talked with my hemo and he felt that it was a result of it being effective so they started using it for more at risk patients doing chemo etc, which was where the adverse reactions were more prevalent and frequent. He had no issues continuing to do it for me in the office setting. It is a blood product and there is always the chance of reactions when you use them (same applies to IVIG), so the precautions until you know how your body will do with it are always advisable.

I had my first treatment today. So far so good. The benadryl that they gave me made me very tired, but otherwise it was a breeze. I am having my count tested one week from today, will post results then —thanks everyone for your support

helenee - Glad to hear your treatment went ok. Want to give you the heads up, winrho can cause your pee to turn orange/ red. Winrho works - in simple terms by tricking the body to take red blood cells. If this happens it ok that said if it continues to for more than 12 hours my suggestion is get it looked at.


I have used Winrho/ Rhogam for years it was my rescue treatment. Remember Winrho works like IVIG brings counts up but not generally for ever. Counts do tend to drop after a while. Shortest time I got from Winrho was like 3 weeks and longest is like 3-4 months.


Sandi- I remember the push would be in and out of treatment in about 30 minutes. Most of that time was waiting for it too arrive then the nurse would mix and do the slow push then some saline disconnect and away we go! Never got warning of them stopping they just did. Never got a proper explanation of why, one nurse said only RN's can do it and another said we don't do that anymore. But no one ever said why. Now with the black box warning maybe it is a good thing they do not do that way anymore.

Glad to hear al went well helenee. Yeah, Benadryl would make you tired - I wasn't given that.

I had forgotten about possibly pee turning orange/red since it didn't happen to me - she's right, if it happens and doesn't go away then get it checked out.

Let us know what your count is next week!