WinRho Quick Question

Quick question about WinRho. Is WinRho a treatment that will either work on its first try or not work period. We didn't get much of any response after the first treatment and now the Dr. wants to try it again? Does that seem right? We are having a heck of a time getting her to stay above 10 for more than a day or two tops. She's going in for another 2X PLT today and WinRho tomorrow. We're scheduled for a BMB on Wednesday. Every other test has come back normal, she's a real conundrum this girl I tell ya!

I have not heard of repeating WinRho if it doesn't work....unless your doc is going to up the dose.

One of my first treatments with WinRho was calculated wrong and I only got 1/10th of a dose....which didn't do much. Luckily it was my second treatment, so we already knew WinRho worked, and the cause of the lack of response on time 2 was investigated because of that.

If your doc continues to order platelet transfusions, I think that ups the urgency of seeking a second opinion.

I totally agree with Tamar about the platelet infusions - you urgently need a doctor with more ITP experience.

I had a few WinRho treatments. The first one worked great, then it worked not so great, then it didn't work. Then they tried an increased dose but it still didn't work so we gave up on WinRho.
Erica

I can tell you that doing Win-Rho again would probably be a waste of time. When I was diagnosed, my doctor tried Win-Rho first. I didn't respond at all. He repeated it weekly for 5 weeks. Not knowing any better, I let him. Never did get a response and had low counts the entire time. I ended up with a $250 co-pay on each treatment.

A few years later I had a conversation with Tamar (our Win-Rho poster child). She suggested trying a higher dose. There were not many options back then and I'd done Prednisone to death. I did try, and again, no response.

There are other options here and he doesn't seem to be suggested those.

Jason, what did Annie do in the few days before she got up to 25K? If that was a short "no treatment" time period, it might be worth trying that again.

There is sometimes a "rebound effect" where a treatment actually causes platelets to go lower when it's withheld. I experienced it with steroids. They would raise my counts while on them, but then when I tapered off or withdrew, my platelets ended up lower than when I started.

I am TOTALLY wildly postulating, but platelet transfusions MIGHT cause a rebound in some people. It's just a random thought on my part, so of course I suggest you get an opinion from a doctor who's familiar with ITP.

Platelet transfusions can cause counts to drop. It's called Post-transfusion purpura. I'd think it would be pretty rare but is always a possibility. If transfusions are not helping, I'd question the purpose.

Jason, has Annie tapered off prednisone, or is that being held at a constant dose? I know in your first thread you mentioned 80mgs prednisone, but then it hasn't come up again.

If Annie hasn't started a taper yet, it's time to talk to the doctor about getting that going. Prednisone must be tapered if you're on it for any length of time.

Bleh. From 89 post trans. To 22 today, we just laugh @ this point.

So lets see I guess Annie's case made it up the food chain now our Hemo's boss is involved. He wants tk skip the NPlates and go straight to Promacta, no real explanation given (we got a call from his nurse) so that wont do, going to insist on a sit down early next week.

There hasn't been any talk about reducing the Pred. But that is the #2 on the list of questions. #1 is still why WhinRo again if it didnt do anything the first time. That one has me stumped, the explanation we got was the previos Hemo wants to see if Annie will responds to a second dose.

Question: Since Annie's refractory to PRED. IVIG, & WhinRo, does that automatically make her a poor choice for Rituxin and others?

As for why the transfusions thats pretty much what they lean towards @anything <10. Im not sure how about that.

Mur:

There really isn't any order as far as Promacta and N-Plate go. It's just a choice as to whether you want to take a daily pill or a weekly shot. A person can get a response to one and not the other, or respond to both.

Your wife could still respond to Rituxan, but I'm not sure if that would even be the right choice for now. She may just have better luck getting stable with one of the TPO's.

It's too bad the Boss didn't say to skip the second Win-Rho.

OMG, poor Annie. Please get the doctor's permission to start tapering the prednisone on Monday!

And really, really, really get a second opinion. There are too many strange things:

1. the continued transfusions
2. the lack of a prednisone taper
3. the confusion about how to handle the first WinRho tx and protocol
4. the consideration of a second WinRho dose instead of a new tx (knowing how WinRho works--by distracting the antibodies from platelets by making RBCs more attractive, if it didn't work once, why would it work on the second try, unless the dose was changing?)
5. communicating to you that NPlate is something that could be skipped to "get to" promacta
6. Annie's lack of response to steroids and IVIg....an expert opinion is in order, instead of just throwing the kitchen sink at her.

Rituxan is often used when other treatments don't work. HOWEVER, it is not a quick fix, and it is not without risks. Sandi or someone else who's kept current can maybe say what the percentage of responders is.

Agreed! It's a difficult thing for any of us to say that a doctor may not be doing the right thing, but those of us who have been here for a long time are pretty familiar with how things should go. Sometimes there are red flags that pop up that suggest that a doctor may not be familiar with ITP. Tamar has pointed out quite a few of them. Your wife seems to be going through some harsh things unnecessarily, such as the high Prednisone dose, many transfusions and an additional day of Win-Rho. It's one thing if you're getting somewhere, but you're not.

I'm not quite sure of the Rituxan success rate; I've heard it quoted as being around 40 to 50%. I think it might be a bit higher though. The problem with Rituxan is that it can take 4 to 12 weeks to work, if it does at all. I don't think you want to waste that kind of time right now because if it doesn't work, the next logical choice would be N-Plate or Promacta. The success rate is higher with those and they can work faster.

I am not as knowledgeable as the forum members here but I did have the high dose prednisone like your wife for many months before weaning began. It was awful to live through but my hematologist said there was some "late responders" to prednisone whos counts in it take time to adjust. My counts did slowly rise over the course of a few months like that. Not a huge rise but into a safer range. I just wanted to share that as maybe there is still a need for the high dose prednisone? It is a tough challenge to get through all of this and can be even tougher when we can't feel like the Dr is doing the right things! I hope you get some answers that make you feel more comfortable with the treatment plan! I am not sure the dose was right for me either... So not trying to say it was, only sharing that she wouldn't be the only one on this high dose And that was the rationale I was given...

That is always a possibility. Sometimes people do respond to high dose Prednisone after a few weeks or months. The problem is: 1) the small response may not be worth the side effects suffered, and 2) there are other easier, faster ways to possibly get there. I think most would agree that high dose Prednisone is one of the most difficult treatments available and for some people, it's intolerable. Someone who responds well would be over 200k on 60 mg's in a week. I wouldn't want to stay on it if I didn't see any improvement in counts after a few weeks. It shouldn't take that long. Prednisone is too hard on the body both short term and long term.

I can't tell you how many posts I've seen where people limp along with a doctor who doesn't seem to be making the right suggestions. They find a better doctor and things turn around 100%. It can literally change your life. ITP can usually be managed quite well once the right treatment is found. A good doctor will usually zero in on that without repeating things that are not working or by appearing unfamiliar with the treatments.

A second opinion doctor could be just as bad, even worse. It all depends on where you go. There are some fabulous ITP doctors around. My Hemo wasn't all that up to date with ITP when I started with him, but my case wasn't too difficult to manage so I stuck with him. I did a lot of research. After a few years, he told me that I'd taught him a lot and that I knew more than he did about ITP. He quickly added that his specialties were a few different types of cancers and he was more informed about those. He said that doctors do not know everything about everything. I appreciated his honesty.

Well I've certainly gone off topic here, but I think it's relevant.

In response to what Sandi said, I am one of those people who did not see a doctor who was an itp specialist in the beginning. I had tried IVGs, prednisone, Nplate, and Rituxin. He basically said I was out of options so let's get your spleen out. He was already setting up the appointments with the surgeon before I even agreed to it. I was so depressed and out of sorts for two weeks. I skipped labs and treatments before my dad convinced be to see a specialist. We took a 4 hour drive to Cleveland Clinic. Long story short, dr. Mccrae was able to analyze all of my treatments and figure out that I did respond to Nplate. The local hema was not dosing it correctly and he would see my counts rise and then not give me a shot the next week. He also respected my decision to not want a splenectomy right now and try other treatments. He also recognized that fatigue was part of itp. I cried because at that moment I knew I was not crazy.

Well since meeting dr. Mccrae over a year ago, my life has completely changed. I did Nplate for about 6 months. He then recommended Promacta for me so I wouldn't have to go to labs/appts as often if it worked and my liver enzymes were in normal range. Well I've been on it since oct. There have even been days that I have almost forgotten that I have itp. Hopefully I will have a day where it doesn't cross my mind at all. Until then I'm going to live my life as normally as possible.

Let's see if I can say this all without being too long-winded.

When I first dropped to 11K, my hematologist put me on 80mgs of pred.

1 week later I was at 425K, so he dropped my dose to 60mgs.

About a week later I was at~520K (yes the count went up while the dose went down), so he dropped the dose to 40mg.

1 week later I was at 40K. He raised the dose to 60mgs.

2 weeks after that I was only up to ~120K, and he started talking splenectomy. And I decided to get a second opinion.

My second opinion doctor and I decided jointly to see what happened if we tapered off by 5 mgs/week. Joint decision, Rituxan was brand new, WinRho was not yet recognized as an ITP treatment. The taper was 4.5 months. My counts never stabilized, swinging form 90K-40K-80K etc etc. I gained 20 pounds and was miserable.

I got down to 2.5mg every other day and my count was still 40K. At that point, I was so crazy I didn't care if my platelet count dropped, I never wanted to see a pred tablet again. THE WEEK after I took my last dose, my count dropped to 17K. Luckily, a paper on WinRho had been published during my taper, and we started that the next day.

I guess my long-winded point is.....if Annie's platelet count is in the teens or 20s on 80mgs, it is does not seem to be working and it is seriously time to talk to the doc about a safe taper schedule.

Numbers are slowly climbing, this maybe part of the roller coaster ride but we are taking it for what it is, a chance to breath!!

We've got a different Hemo now he's pretty much the top guy in our little 7million plus sized town.

Did the second round of Winrho based on his recommendation to "attempt" to keep her numbers up prior to the BMB and it helped, he said he's seen this type of response before.

Failed to get authorization for Promacta seems the insurance thinks we should "try" other treatments first.

New Dr. isn't scared of Rituxan going in to talk with him about the info on the low dose studies.

Yeah it's Monday.

JM

You don't need a high count for a bone marrow biopsy. You won't bleed anyway.

I have had two, one with a count of 2 and the other with a count of 8.

Yeah I typed that part kinda fuzzy the attempt to keep her numbers up & the BMB just happened to be @ the same time. So far both went well. Her numbers are climbing and her BMB came back all normal.

Jason,

I'm glad you and Annie found a doctor who is knowledgable and keeps current on ITP. As helpful as anecdotal experience can be, it doesn't come close (IMO) to ongoing face-to-face interactions with the right doctor. Keep us up-to-date as you have time!

Tamar