Did Win-Rho help you? Side effects?

I have 2 doctors who disagree about whether or not I should be treated with Win-Rho.

If you've had Win-Rho, did it help? And what side effects, if any, did you experience?

I've had ITP for a while now, tried Rituxan but platelets didn't increase much. My hematologist wants me to try Win-Rho, but my rheumatologist (I also have Lupus) thinks the side effects make it too risky. I need to have surgery, and I need to increase my platelet count so that I'll heal properly.

Thanks!

My son is the one with ITP and he has received WinRho numerous times. As a clarificiation, I think that WinRho is a brand name of anti-D. Brady has received WinRho a number of times but 3 or 4 years ago his doctor recommended switching to Rhophylac, another anti-D product and he tolerated Rhophylac much better. The side effects Brady gets are chills, headache, body aches. We make sure to hydrate him very well before, during and after the treatment and give Tylenol and Benadryl before and after, which seems to help. Also, even though WinRho can be given as a quick "push," Brady receives it in a slow drip and we are in the clinic for about 4-6 hours total. The slow infusion is also to minimize side effects.

Within the last couple of years (I think) there was a black box warning issued for WinRho and, I guess, all anti-D products, indicating that they can lead to severe complications: www.ncbi.nlm.nih.gov/pubmed/21981825 Brady last received Rhophylac over two years ago and I asked about the black box warning but the pediatrician still recommended we go ahead with it. I think the black box warning is about a adverse reaction that has happened very rarely but it's good to be informed.

Anti-D products work great for Brady - his counts after treatment go up into the 300k range and stay there for a number of months, sometimes nearly a year. He last received Rhophylac 2 years ago and has not been treated since. We haven't checked his counts in a year but they were at 60k the last time we checked and no inkling of them being low at this point.

So - I know it's not for everybody but it is Brady's treatment of choice. Just FYI, he has also tried: steroids (no response), Rituxan (no response), IVIG (great response but terrible side effects).

Good luck -

I had a "push" of winro once a month for three months. The side effects were flu like, weakness, urinating blood, headaches, etc. It lasted almost a month in between. I couldnt get it any more because the last time my hemoglobin went down too low with it, esp with heavy menses.

WinRho was my daughter's first treatment--not a good experience! I was told it had no side effects to speak of, even though I really pushed yo know more, because I know that all drugs have side effects (this was 9 years ago). They observed her for 30 minutes then sent us home. 20-30 minutes later, first she vomited, then she went into anaphylactic shock. If you don't know what this looks like, basically it's like seeing your child dying in front of you. It happens very, very quickly. She came back from throwing up, then went totally white--a shade of white that's just not normal. It's because as the blood pressure drops, no blood is circulating. She grabbed her throat, mouthed "I can't breathe!" and collapsed in the restaurant booth (we had been at the hospital all day and not allowed to eat.). She was unconscious at that point. I somehow scooped her up (She was 12, and not much shorter than me. ), and threw her in my van. Our house was just blocks away, so I sped home. This was BCP (Before Cell Phones). I ran in and grabbed a homeopathic remedy called Apis, which I recalled was good for allergic reactions and anaphylaxis, and put a couple of the little pellets in her mouth. They are poppy-seed size and dissolved almost instantly. Within a minute, she came to a bit. I gave her another dose, and within 5 minutes she was able to walk into the house with my help.

The rest of the night she spent vomiting what looked like coffee grounds, every 20 minutes or so. This is indicative of bleeding in the gastral intestinal tract. She had a horrific headache, was drenched in perspiration and generally felt wretched. This continued the entire night. When we returned to the hospital, her platelets which had been at a 5k, were now at 3k. So not worth it!

Later on at a PDSA conference, one of the presenting researchers explained that both WinRho and IVIG are meant to be used only as a temporary fix--they are not intended or expected to have a long-lasting effect.

What Brady's mom suggested with the hydration, pre treatment and longer infusion rate are all helpful in mitigating possible reactions. (although, for some people, the Benadryl, Tylenol and Prednisone given as pretreatments can also negatively affect your platelets or cause side effects of their own!)

There are a few homeopathic remedies you could have on hand to lessen the side effects. Of course, one of those would be Apis, in case of anaphylactic shock, or other allergic reaction. ( My daughter later had an anaphylactic shock reaction to IVIG while in the hospital. Her blood pressure bottomed out, she was unconscious for over an hour. The Epi pen did not work nearly as quickly or as well
as the Apis had. )

Thanks for your responses; they are very informative. I have a lot to think about and discuss with my doctors.

Beth F: Wishing you and your son well!

And to whatthewegoingtodowiththis and april, hope you've found something that works!

I had WinRho multiple times (~20 times) from 2002-2007. I always received a drip (not a push). I was able to go 6 weeks - 6 months between treatments. I did not have any side effects, other than a slight drop in hemoglobin. My hemoglobin was at the high end of normal to begin with, so this wasn't a concern for me.

Then there is me. One Win-Rho IV back in 2002, no problems and have not had to treat since. I do not think I would let them do a push on me. My count is not in the normal range but it is good.

I've had Win-Rho too, years ago (1998). I had 5 weekly treatments by a five minute IV push, no pre-meds. I went right back to work afterwards. Felt a little flu-like the rest of the day, but no big deal. It didn't bump my counts up at all though. In retrospect, I should not have bothered trying it again after the first one didn't work.

I had ITP twice, 6 years apart, the second one started in April.
On my first treatment, the one 6 years ago, Rituxan was not yet very developed, so I was given Whin Rho. It had hardly any side effect, but its administration takes long, and if any effect, it shows up within the the first 2 hours of taking it, so need to stay at the medical facility.

On my second case, I was treated with Rituxan, again hardly any side effects.

Thanks to everyone who has responded, I appreciate it!

For those of you who had a good result, may I ask what your platelet counts were before and after the Win-Rho? And how long did it last?

WinRho was my first treatment after 15+ years of no treating. In 2010, I dropped to 6 and had to consider treatment. I started winroho with count of 11 and would get 8-12 weeks before I would drop under 30 at which point we would schedule another infusion. 2 weeks post treatment my counts would be 150K to 230K. After 18 months of treatment, I stabalized back to "my normal" of approx 50K and held for over a year.

Witin a few hours of the infusion, I would have about 4 hours where I had flu like symptoms chills, etc and I might drag a bit the day after. I definitely would not recommend planning activities immediately after, just plan on going home to take the nap or take your blankie and a designated driver. Fortunetly for me I live 3 miles from my hemo's office. Pre-treating with Benedryl and dong a drip over 30 minutes vs a push caused less issues for me (about an hour in office overall, pre-draw, set-up in infusion room, drips, paperwork, etc). The first infusion they were ultra cautious and pre-treated with Benedryl and 2 IV steriods and did a very slow drip over a couple of hours so they could monitor me. Afte the first one, we did less and less pre-treatment until we were down to 1/2 dose of benedryl. The black box warning came out after I had been doing it a while and I discussed with hemo. His take was that the serious issues occurred for chemo patients who had other stress vs the ITP patient. It is a blood by product so you do run some risks. Because it raises platets by flushing red blood cells, you do have to be aware and watch for side effects that can happen if they flush too rapidly.

After my 1 year remission, I only got 3.5 weeks before I was back down to 6, so I moved on to Promacta.

Wow! Really interesting to see such stark differences in each hospitals protocols, as well as reactions and results.

Although at the time, I wasn't familiar with any of it, I think what they did on my daughter must have been a "push", because I recall it only taking a very short time. But, we really had no reason to suspect she would have an anaphylactic reaction. Other than ITP, she had rarely been sick, had no food or seasonal allergies. Up until that time, she had never had any kind of medication at all, not even an OTC drug or an antibiotic, so I didn't know if she would be sensitive to anything.
I forgot, too--one other symptom she had was she was peeing cola-colored urine, which was a bit freaky! At the time, I thought it was an indication that her urinary tract was bleeding. Come to find out (from PDSA, and not the doctors), it was an effect of the WinRho and how it acts on the red blood cells.

Afterwards, she had weekly rounds of IVIG which she was heavily pretreated for,and the infusion rate was very slow, and so took 14 hours each time. She barey had a blip with these, though, and now, I have no idea why they kept ordering these treatments for her. She might get 2 days at 20 or 30k, and then a few days later she'd be back down to 5k or thereabouts.

But, I did finally find what has been a permanent cure for her. I had begun a formal study of homeopathy at the time, and finally found the right remedy match for her (Homeopathy is remedy specific. Each person requires their own remedy, based on their total symptoms and unique way of experiencing their disease.) Her last count before her counts came up was 11k. 4 days later her counts were 411k! since that time, they have remained in the high 300s for 8 1/2 years. They've fallen only once in all that time, and that was after getting an intensely painful condition called Trigeminal Nerve Pain. Her plateets dropped to 50k at that time. But, again, her homeopathic remedy, given in a very high potency, stopped the pain within a few minutes. When we had her tested two days later, she was once again in the high 300s. And, rather than any side effects, we've strictly seen "side benefits", using homeopathy.