WinRho doctor didn't mention this? Rituxan fda

Why didn't my doctor mention this drug? It seems like a safer and more successful alternative to rituxan. Just had my second rituxan treatment. Why is it not fda approved for ITP. Gotta say at this point coventional medicines perspective on treating this disease does not make any sense to me.

It's not just ITP. Many drugs are used, off-label, for ITP and many other illnesses. It happens all the time. I'm not even sure if Rituxan is even approved for ITP yet. It wasn't for a very long time but was used anyway if insurance would approve it. Rituxan was originally developed for Non-Hodgkins Lymphoma.

Win-Rho was used for ITP quite often years ago. It was normally done with just a 5 minute IV push and people headed out the door. I know because I used to get it (in 1997) during my lunch break. For most people, it would last an average of a month or so. It never raised my counts, but I did have 5 treatments.

Somewhere along the line, people began getting very serious side effects and it was enough for the FDA to issue a black box warning. Doctors began to stop using it and those who did administered it by an hour long IV, and would keep the patient for about 10 hours to monitor them. At this point, I haven't seen Win-Rho used in a few years. Maybe once or twice here and there. It's kind of been phased out since Rituxan the TPO's came around.

WARNING: INTRAVASCULAR HEMOLYSIS (IVH)

Intravascular hemolysis leading to death has been reported in patients treated for ITP with WinRho® SDF.

IVH can lead to clinically compromising anemia and multi-system organ failure including acute respiratory distress syndrome (ARDS).

Serious complications including severe anemia, acute renal insufficiency, renal failure, and disseminated intravascular coagulation (DIC) have also been reported.

Closely monitor patients treated with WinRho® SDF for ITP in a healthcare setting for at least eight hours after administration. Perform a dipstick urinalysis to monitor for hematuria and hemoglobinuria at baseline and 2 hours, 4 hours, and prior to the end of the monitoring period. Alert patients and monitor the signs and symptoms of IVH including back pain, shaking chills, fever, and discolored urine or hematuria. Absence of these signs and/or symptoms of IVH within eight hours does not indicate IVH cannot occur subsequently. If signs and/or symptoms of IVH are present or suspected after WinRho® SDF administration, post-treatment laboratory tests should be performed including plasma hemoglobin, haptoglobin, LDH, and plasma bilirubin (direct and indirect).


www.winrho.com/

I don't necessarily think WinRho was normally done with a 5 minute push - yes some people had it that way but I don't think it was/is the norm. I was given it by an IV in 2002 and believe me I wouldn't have wanted it as a push - and I wonder if that isn't why some people had side effects.

Actually Rituxan has a red box warning - so does IVIg
www.nlm.nih.gov/medlineplus/druginfo/meds/a607038.html
www.nlm.nih.gov/medlineplus/druginfo/meds/a682815.html


I asked my hematologist not long ago if I could have WinRho again if needed and was told yes, monitoring after administration. I just hope I don't have to make that decision! It did put me in a "remission".

I never quite understood the warning on WinRho. Not because IVH doesn't happen but because a minor level of IVH is the whole point of the drug so you can't tell when to be concerned and when not to. I only had the drug once, as a push, with no effect to my platelets but it did cause anaemia. I did have strange coloured urine but was told that that was normal.

The manaufacturers have in fact stop selling the drug in the UK completely which probably isn't a bad thing.

Melinda - by 2002 they were doing Win-Rho by IV. I had it done that way once then too, when Tamar convinced me to try a higher dose to see if it worked. That would have been around 2001, I think. Before that, it was an IV push. You're right, Rituxan and IVIG do have black box warnings too. I've posted that before. I don't know why they have moved away from using Win-Rho, all I know is that I don't see it used here any more. This board used to be filled with people using it. I'm sure some doctors would still try it if it was requested, but as a general rule, they don't recommend it anymore.

Is it safer than Rituxan? In my opinion, yes. If people don't have a reaction to Win-Rho, there do not seem to be any long term side effects compared to Rituxan. I know that you did get a remission after just one treatment, Melinda, but most only got a few weeks, so that was one downfall. Tamar did manage her ITP for years with Win-Rho though. It was great for some people.

Rituxan is much more toxic, I think, and after all these years of having to use harsh drugs, I am starting to move away from believing that they are safe long term. I am not a fan of over-treating ITP and I see that done quite often. If I had it to do over again, I would have managed it much differently.

You are correct Sandi.

People do tend to over treat rather than just aiming for a safe platelet level. When first diagnosed my GP said no work until platelet count is steady above 50. ( However consultant I'm now with said rubbish it depended on how I felt and whether I bled or not)

I went through 3 therapies that had horrid side effects and didn't work before swapping consultants to do the fostamatinib trial where 50 was the target count.

That is all TPOs aim for. I am now taking N Plate and aiming for the lowest dose to keep me as near to 50 as possible.

I have already discussed with my consultant about stopping this once I retire from front line nursing.
Anne

Extremely low platelets is scary - so yes, we would tend to/want to over treat. It takes a while to see that safe counts are good and one doesn't necessarily need to have counts in the normal range [then the over-treating lessens].

I just think if we are going to scare people about 1 treatment we should scare them about all of them. The black box for Rituxan does mention death too. An onc nurse told me that usually if one doesn't have a reaction to Rituxan the first infusion they probably [that's: probably} won't with subsequent infusions.

When I first came to the discussion group, was that 2002?, there were lots of people receiving WinRho and lots of them were doing the push - in fact people were even recommending the push which I thought wasn't good because of purposely introducing something foreign into the body so quickly and thinking of course the body would react.

I'm not trying to scare anyone, dear. I'm not even sure what you're talking about because I did say that I believed Win-Rho to be safer than Rituxan.

What I am saying about over-treating is that people are over-treated when they use three treatments at once before finding out if just one would have worked (kitchen sink approach). Or they use maintenance Rituxan doses without knowing that the counts would have stayed up without them. Or they treat constantly to achieve normal counts when they might just be able to maintain safe counts on their own. In time, all of these drugs have cumulative side effects. Doctors and patents are too consumed with let's fix this NOW instead of staying calm and using minimal intervention. I have watched people manage ITP with low counts with few treatments and they have done quite well.

I do believe that all of the treatments have risks, but the risks obviously go up with some treatments more so than others. As far as Rituxan side effects, I consider a reaction that occurs during treatment to be the least of the problems that Rituxan can cause. Reactions during treatment can be easily rectified; long term side effects cannot. If I had to choose between Win-Rho and Rituxan as far as safety goes, I would pick Win-Rho without a doubt. But in keeping with the trending ITP treatments of the present day, it just isn't on the table much any more.

I wish ITP had been viewed like this when I was diagnosed and I wish someone had told me these things. If so, I would not be in the situation that I'm in now. Medications destroyed my body. Overuse of immunosuppressants can cause cancer that may not be apparent for many years. Nobody talks about that. It's one thing if you start them in your 50's, another thing if you start them in your 20's.

Drugs are over-used in this society. There is a new drug approved for opioid constipation. It's called Movantik. I think it's a joke. Really? Ridiculous! I have opioid induced constipation and I can tell you that the correct type of Magnesium does the exact same thing, without all of the horrible side effects. I know it for a fact because that is what I use.

What is the most important information I should know about MOVANTIK?
MOVANTIK may cause serious side effects, including:

Tear in your stomach or intestinal wall (perforation). Stomach pain that is severe can be a sign of a serious medical condition. If you get stomach pain that does not go away, stop taking MOVANTIK and get emergency medical help right away
Opioid withdrawal. You may have symptoms of opioid withdrawal during treatment with MOVANTIK, including sweating, chills, diarrhea, stomach pain, anxiety, irritability, and yawning. Patients taking methadone to treat their pain may be more likely to experience stomach pain and diarrhea. Tell your doctor if you have any of these symptoms

What are the possible side effects of MOVANTIK?

The most common side effects of MOVANTIK include: Stomach (abdomen) pain, diarrhea, nausea, gas, vomiting, and headache