Hopeless, depressed, suicidal.

I think it's largely about money. Without a financial incentive, there are no drug companies to do the research and support use of the drug.

Interestingly, Francesco Zaja was lead author of studies in favor of low-dose rituximab as well as dapsone for ITP. Ellen continues her partial remission since her low-dose Rituxan treatment almost 11 months ago.

I don't understand why it would be to do with money when we use drugs like mycophenolate and azathioprine regularly and they are just as cheap. Dapsone is an old fashioned drug as far as ITP goes, just the same as splenectomy is an old fashioned treatment.

Rob, Dapsone has just fallen out of favor (not that it was ever really in favor). It's been replaced and it's antiquated. Many years ago, Valium was the wonder drug for anxiety/depression but has since been replaced by Xanax, etc. Out goes the old, in comes the new, although Dapsone never really was a solid treatment. Like I said, I can only remember one person in 17 years having success with it and for all I know, it could have been a coincidence that her counts went up. Very, very few here have tried it and no one but Sunny has touted success with it (that I recall). For that reason, I don't think very much of it and wouldn't recommend it. If it's not being prescribed, there must be a reason.

I'm so glad that Ellen is still in partial remission and I hope it lasts!

Ann, I agree with you that money does not seem to be the reason.

Sandi, "If dapsone is not being prescribed there must be a reason" is analogous to "If splenectomy is being prescribed so often there must be a reason.". I am not big on following the herd (except possibly if it's a herd of zebras ) I am confident in the data on low-dose rituximab, for example, but the standard dose remains the norm. Lots of good ideas fall through the cracks.

I agree that some of the newer drugs are used more often because they are, on average, more effective. SSRI antidepressants have largely replaced the old-fashioned tricyclic antidepressants. But, there are plenty of patients for whom the SSRIs don't work and the tricyclics do...patients respond differently, and for some the old fashioned is better. I could give you many more examples where "old" does not necessarily mean "obsolete", and newer does not always mean better.

I believe in fact-based medicine. I have found a satisfactory number of studies showing that, where other treatments fail, dapsone can often be effective, to convince me that it should be considered prior to splenectomy, or when splenectomy fails, or when other treatments are unaffordable. I have not found one study that showed dapsone to be ineffective. or its risk profile to be unacceptable (with proper monitoring!) compared with other treatments.

Okay, after having said all of that, Rob....what can you do about it? What can you do to change things and make Dapsone a viable, prescribed treatment? We're having this debate but all that can come from it is our opinions. We gave ours, you gave yours. I'm not changing mine. What's left? It's hard enough to get doctors to conform to the current ITP standards that their peers set, so what could possibly be done by you or any one of us to salvage and save Dapsone? I'm not sure what you're trying to accomplish.

The difference between Dapsone and splenectomy is that splenectomy was a very popular treatment option at one point. Dapsone never was. I'm all for thinking outside the box, heck, I tried Dapsone myself. I don't always go with the herds either but in this case, we don't really get a choice as to what is listed as first, second and third line treatments. For some reason, the studies done on Dapsone did not impress anyone enough. Look at Win-Rho. You weren't really around when it was top rated and used often. It's nearly dropped off of the radar now. It's no less effective and no more dangerous than it used to be. But....it's pretty much gone. Yes, ideas fall through the cracks but with the fantastic, renowned team of doctors dedicated to ITP, I don't think they would allow a potentially successful treatment to fall through unless there was a good reason. The reason low dose Rituxan isn't taking off is because not enough doctors are paying attention to the suggested changes. They don't read the studies. I do, so I pretty much stick to what is currently recommended and standard. I can't get off track and suggest treatments that are not common practice. It wouldn't be responsible and this Forum would lose credibility.

Please know that I appreciate any debates that go on here, including this one. That is how we learn and brainstorm. If anything, any one that reads this is now aware of Dapsone and could potentially suggest it to their doctor. Maybe it will help someone sometime. If Ellen ever needs to treat again, maybe you can start with this one.

P.S. I've looked at some studies too. Most were older than 10 years, although I did find one from 2015. They were all small studies, mostly done outside the U.S. Success rates varied from 47% to 60%. All articles stated that Dapsone was a cheap, safe, effective treatment for ITP.

I see what you're trying to say, but that still does not change the current structure of prescribed treatments.

The Zaja study (2011) included 20 patients, but also summarized 5 other studies, 3 of which had more than 50 patients, including one which was cited in The American Society of Hematology 2011 evidence-based practice guideline for immune thrombocytopenia, for a total of 212 patients. The combined response rate was 52%.

The problem is not that Dapsone is outside of the current structure of prescribed treatments. Dapsone is on the list of recommended treatments in Table 5 of the International consensus report - as a second line treatment along with Rituxan, splenectomy and TPOs - and is included in the body of the text. (The statement about being ineffective for splenectomized patients is extremely odd, in that it completely contradicts the citation used to justify the statement.)

The problem is that even though dapsone is included within the current structure of prescribed treatments, it is overlooked as a treatment that often works when others fail. The way to change that is for patients to be better informed so that they can better advocate for themselves. That is what I am trying to help accomplish.

I think we agree on much more than we disagree, and I can live with the rest.
It is a good debate that generates more light than heat!

Here's a study I've just found from last year ijcci.info/pdf/apr14/Article2.pdf