Dapsone

I have has ITP since 1999.My first episode lasted a year and I reverted to normal counts within a year with no treatment .My second episode lasted about 3 years and. I did a pred taper and whilst may counts initially dropped after the taper they then rose and I got a 9 year remission and it is now back again.This hing is I know longer live in the UK but in Australia and I am trying to get up to date with new treatments etc.

TO cut a long story short my counts over the past 3 weeks have been 16 then 19 then 30 then 23 . I have minimal symptoms except when I was 16.My hemo has agreed to watch and wait initially and then he has suggested that I could try dapsone in preference to dex 4 day treatment should treatment be needed.He said dapsone works in about 40 per cent of cases and is less toxic than steroids.I would welcome peoples thoughts it experiences with Dapsone.Thank you.

Happy chick,

I have roughly the same counts as you since this spring. Lowest 15K, typically around 25K. I also have no real symptoms, apart from fatigue. The strategy, in agreement with my doctor, is to wait and see. Does your doctor suggest Dapsone now, or in the case that the counts drop below some value? What would be the threshold?

Carl

Hi Carl
thank you for responding .He is ok with watchful waiting but said if I get impatient it might be worth considering dapsone as an option and then we would
Also know for the future if it works.I will not take anything if my counts go above 30 but I was thinking if they are still low 20s or less they might need some kind of kick start.I do hate being this low.....Symptoms wise I am ok and my petiche Sp.? Have cleared up .....

Dapsone is something I could not take since I'm allergic to sulfa
www.nlm.nih.gov/medlineplus/druginfo/meds/a682128.html

To know what treatments are out there have you gone to the top of the page & in the platelet color purple color you can put your cursor on Treatments and then click on Conventional or Complimentary -- then you know what there is and can talk to your hematologist about them. I don't know what is available in Australia, but hopefully MJ or Milly or someone else from there will see your thread and respond.

Good luck!

I could not find any reference to Dapsone in the PDSA treatments section, other than antibiotics in general. But I found plenty of references in research journals.

scholar.google.com/scholar?q=dapsone+itp&hl=en&as_sdt=0,11

Combining multiple studies, I found that the overall response rate to Dapsone is around 55%. And, it is often effective when nothing else works. Here is one such study:

onlinelibrary.wiley.com/doi/10.1002/ajh.22266/full
Dapsone salvage therapy for adult patients with immune thrombocytopenia relapsed or refractory to steroid and rituximab†
Francesco Zaja*, Luciana Marin, Marianna Chiozzotto, Simona Puglisi, Stefano Volpetti and Renato Fanin
If compared with [Rituximab and Nplate], dapsone is satisfactory as to toxicity. In this study, the incidence of hemolysis or methemoglobinemia was not significant and none of the patients experienced important side effects or interrupted therapy because of treatment intolerance. Other authors showed the development of reversible side effects requiring cessation of therapy in 2–10% of patients [4, 6].

In conclusion, dapsone appears to be a cheap medical alternative for patients with ITP and is active also in patients who failed previous rituximab therapy. The response is achieved in most cases after nearly 1 month of therapy, and it is generally maintained during therapy. Even if dapsone has a good safety profile, it is necessary to monitor the level of MHb and hemolysis particularly during the first weeks of therapy and to be aware of factors that may precipitate dapsone-induced methemoglobinemia as anemia, pneumonia, or lung diseases and to know how to manage this complication. A better comprehension of ITP pathophysiology and of dapsone mechanism of action will allow in the future a better and rational integration of this agent into the treatment algorithm of primary ITP.

Sandi, in an earlier comment, was less optimistic:

pdsa.org/forum-sp-534/13-general-discussion-for-parents/28212-dapsone.html#42650
Dapsone will take a while to work, weeks or months. It's not used often and doesn't have a very good track record as far as success, but it does work once in a while.

This is interesting, so using an antibiotic can increase platelets? Is this just one round, or is this basically constantly taking this drug for a month or two?

It's used to keep counts in a safe range, so it would be a long-term treatment. It's so rarely used that I do not have any info on remissions.

If it works, it must be taken continuously, and it can take a long time before it begins to work. Remissions do occur, but not often.
Dapsone is an antibiotic, but it also has anti-inflammatory properties, so not just any antibiotic will have this effect.

Interesting tidbit: Dapsone is used to treat leprosy.

Whilst I was undergoing my Rituximab treatment I also took Dapsone for the 4 week period along with 100mg of Prednisone. I do not recall feeling any side effects from the Dapsone however my specialist did say that she would not have used that treatment in hindsight so something was amiss in my blood test results at the time. I was in hospital during all this and each time the nurses would do their routine checks (BP, pulse, temp, etc) they would always say that my oxygen levels were low and ask me to take some deep breaths so maybe the Dapsone was to blame(?). Unfortunately the Dapsone did not have any positive effect on my platelets and once I stopped taking it my oxygen levels returned to normal.

Interesting. Methemoglobinemia is a known side effect of Dapsone so could account for the low oxygen level. Asking you to take deep breaths would have been useless as the problem is not that you don't have enough oxygen in the blood but that the red cells cannot release it.