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TOPIC: Dapsone 100mg for PTI

Dapsone 100mg for PTI 3 months 3 weeks ago #66388

  • GrouchoMarx
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Dear all,
My doctor just proposed me to take 100mg of Dapsone in pills.
It seems in a recent study in Brasil they had 50% success in increasing the count using 160 volunteer patients.

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Dapsone 100mg for PTI 3 months 3 weeks ago #66391

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Wow, good luck! Keep us posted!

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Dapsone 100mg for PTI 3 months 3 weeks ago #66412

  • Hal9000
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AFAIK, those that respond to steroids should respond to Dapsone. Going through my notes, this report by PDSA member 'Steen' may be of interest to you.
pdsa.org/discussion-group/search.html?searchuser=Steen&exactname=1&searchdate=all&order=inc&childforums=1

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Dapsone 100mg for PTI 3 months 3 weeks ago #66414

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Txs Hal for the link. I will keep you informed.

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Dapsone 100mg for PTI 3 months 3 weeks ago #66416

  • Hal9000
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Ok, sounds good.
Did you happen to notice the Dex treatment 'Steen' was taking? Have never seen anything like that before. Dex is very capable of sending one into remission. I don't think Dapsone can do that. But, not a lot of Dapsone cases here on PDSA, so don't really know.

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Dapsone 100mg for PTI 3 months 3 weeks ago #66418

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Dex put me on partial remission. My counts oscillation goes from 30.000 to 50.000 approx.
Dapsone is just an antibiotic, so it doesn't makes my life miserable so far like prednisone or dex. If Dapsone just push the oscillation an extra 20.000, I would sign the paper. It will mean my oscillation would go from 50.000 to 70.000. What basically means almost normal live. Lets see. I understand that I can take this antibiotic on regular basis since the side effects is minimal.
My last count was 27.000 thou but I strongly believe I had very mild chicken pox that week. Mild cos I was vaccinated. Me and my son ended up that week scratching like crazy our arms with small red points. That might explain the low.
On my ITP I start to think it wasn't due to vaccination but to an overdose of antibiotics received through my veins after an episode of fever and shivering (probably due to a tonsil infection). If by any chance I am right, I wonder if Dapsone (being an antibiotic as well ) can be more effective.

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Dapsone 100mg for PTI 3 months 3 weeks ago #66423

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On my ITP I start to think it wasn't due to vaccination but to an overdose of antibiotics received through my veins after an episode of fever and shivering (probably due to a tonsil infection). If by any chance I am right, I wonder if Dapsone (being an antibiotic as well ) can be more effective.

FWIW, I think the spleen, liver, and tonsils is where Epstein Barr Virus tends to be found in abundance.
www.webmd.com/a-to-z-guides/epstein-barr-virus#1

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Dapsone 100mg for PTI 2 months 2 weeks ago #66702

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My results since I started the treatment with DAPSONE on 26.04.19

- 25.04.19……………..27000
- 02.05.19……………..44000
- 14.05.19……………..46000
- 22.05.19……………..52000
- 05.06.19……………..80000

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Dapsone 100mg for PTI 2 months 1 week ago #66713

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Up, up and away.
With the 80, looks like already moved past any 'partial' treatment effect. Possible going up to normal count range? Go to a lower Dapsone dose?

Any side effects?
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Dapsone 100mg for PTI 2 months 1 week ago #66714

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Hi Hal9000,

I sent the count to my doctor and he just answered me the word "good" from his holiday resort., Need to know what is in his mind. My red cells are a bit lower thou, the erythrocytes i mean. 4,32%..... It should be somwhere from 4,5 to 6.5..

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Dapsone 100mg for PTI 2 months 1 week ago #66715

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Good count Groucho.
Regarding erythrocye count this is interesting www.ncbi.nlm.nih.gov/pmc/articles/PMC2998697/#!po=0.55555
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Dapsone 100mg for PTI 2 months 1 week ago #66734

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Yes MRSB,
Thank you for the link. I knew that Dapsone can affect my red cell count. It was the first down since I started the treatment more than 45 days ago. I am not sure why my doctor isnt concerned. Because is just slightly below range? Because I had a cold for the last 2 weeks? Because it might increase to normal range again once my body adapts?
Not sure... I will ask him when I meet him. My emails exchange to him are "free" for me, thats why i guess he doesnt wish to give me much explanations until I pay (the insurance in fact) the doctor consultation fees.
If you or anybody has an answer please let me know.

Txs

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Dapsone 100mg for PTI 2 months 1 week ago #66751

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Having never really investigated Dapsone before, mrsb04 post got me intrigued about details of how it works.

This study here talks about two theories on Dapsone. One is about ... ''dapsone-induced hemolysis leads to erythrophagocytosis by the reticuloendothelial (RE) system, preventing sequestration and destruction of platelets." That sounds like the immune system is too busy destroying erythrocytes to be able to destroy platelets. The immune system has finite resources and the priority is erythrocytes over platelets. This reminds me of recent posts here on PDSA about folks who get a knee replacement. They consistently find themselves with high counts, without any ITP treatments, for several weeks after the operation.
"How does dapsone work in immune thrombocytopenia? Implications for dosing"
www.bloodjournal.org/content/125/23/3666?sso-checked=true

The second theory on Dapsone suggests its anti-inflammatory effects leads to higher counts. I think the author was suggesting that if the first theory is true, platelet counts should be proportional to Dapsone dosing - and not so much if the second theory is true. May be more of threshold affect.

Here is a study which states that the average time to platelet response is 3.5 months. Still got some time for counts to potentially go higher Groucho.
"Dapsone for chronic idiopathic thrombocytopenic purpura in children and adults--a report on 90 patients."
www.ncbi.nlm.nih.gov/pubmed/16146539

If all that was not interesting enough, this last one was - at least for me.
"Successful Treatment with Dapsone for Refractory Immune Thrombocytopenia"
www.researchgate.net/publication/273163392_Successful_Treatment_with_Dapsone_for_Refractory_Immune_Thrombocytopenia
The patient described has a good chance of being a row 2 responder. A long list of things don't work: steroids, Danazol, Azathioprine, and Cyclophosphamide. But what does work is steroids and IVIG combination. The IVIG alone response was untested and thus differentiating between row 2 and row 4 can't be made. Dapsone does not appear in row 2 of my ITP treatments table - a table which was generated by reviewing PDSA forum success stories. It is only listed for row 1. So this study suggests Dapsone should be listed in row 2 as well as row 1.

My two cents. By looking at the population size of ITP patients who benefit from Dapsone, some 63.3% as stated in the first study, my guess is the second theory on Danazol is most compelling. That Dapsone works by reducing the inflammation associated with row 1 and row 2 ITP. Because if the first theory were true, likely 100% of ITP folks would benefit from Dapsone.

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Dapsone 100mg for PTI 2 months 1 week ago #66762

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Hal

Very interesting indeed. I will have a lot of material to read. Crossing fingers Dapsone works long term. I will keep u posted.

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Dapsone 100mg for PTI 2 months 1 week ago #66769

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According to this article, 21% of patient (21 out of 100) got a full recovery. Meaning more than 100.000 counts after 2 years of tapering out.
It worth a try I guess.
www.jahjournal.org/article.asp?issn=1658-5127;year=2014;volume=5;issue=3;spage=86;epage=90;aulast=Khan

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Dapsone 100mg for PTI 2 months 1 week ago #66773

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I notice in the study:
- 10% get pruritus/itching, which is not that small of a percentage
- 80% responded to steroids
- I wonder if a majority of those that achieve remission (21%), were row 2 (non steroid) responders, where one would expect remission
- 50% of children did not respond to Dapsone, which seems low. The spontaneous remission rate is much higher for them.

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Dapsone 100mg for PTI 1 week 6 days ago #67204

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Dapsone. End of the journey for me. It seems it produces hemolysis in my body.
A pity. I had high hopes. I can't say it was that bad. I most probably had an average higher count between 10000 to 15000 platelets with it than without it.

When your average is 40K to see it over 50K, it makes a more positive note but side effects are too important.


WITHOUT DAPSONE (OR ANY OTHER DRUG)

18.12.18.......................39000 
- 03.01.19.......................43000 
- 10.01.19.......................74000 
- 18.01.19........................43000
- 28.01.19........................55000
- 08.02.19........................39000
- 19.02.19........................35000
-        01.03.19 …………….34000
-        18.03.19……………..29000
-        01.04.19……………..43000
-        17.04.19……………..50000
-        25.04.19……………..27000 

JUST WITH DAPSONE
-        02.05.19……………..44000 
-        14.05.19……………..46000
-        22.05.19……………..52000 
-        05.06.19……………..80000
-        19.06.19……………..53000
-        04.07.19……………..54000
- 18.07.19......................37000
- 25.07.19.....................46000
- 06.08.19.....................41000

Well, it was another try.

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Dapsone 100mg for PTI 1 week 5 days ago #67216

  • Hal9000
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Valiant try Mr Marx. Without hemolysis, looks like it was a good option. Compared to my untreated counts (12 to 18), your counts look pretty darn good to me. Maybe just watch and wait?

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Dapsone 100mg for PTI 1 week 5 days ago #67223

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Txs Hal. Indeed it was a try as u say. Without any drug I expect a roller coaster from 25K to 50K. As I intended to carry on with my normal life (flying, gym, tennis, sauna) I hoped that the 40K - 50K segment would give less room for concerns. Hope that my extra 10K that doesn't appear in my counts (as doctor says) will be an ace under my sleeve if needed at all.

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