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Anyone tried Dapsone or Danazol recently?

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8 years 2 months ago #60002 by darcher
Replied by darcher on topic Anyone tried Dapsone or Danazol recently?
Oh Wow! I hear you when you outline the drug approach and ongoing issues. All the best of luck with the operation and keep us in the loop on how it goes. I know more than a few people will be interested.
Cheers!
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8 years 2 months ago #60003 by darcher
Replied by darcher on topic Anyone tried Dapsone or Danazol recently?
Hey Hal. That's the frustrating thing - we're all a bit different :)

Yes, Rituxan is certainly still a good option, and when I get cold feet about an operation, its probably one I will try. My Hemo feels this would be just another temporary measure given the minute I stop any sort of drug intervention, my platelets dive for the floor.

Imuran is not one I have heard of before. I'llremove recycled IgG antibodies from circulatio have to investigate. I also like the sound of the new ARGX-113 drug being trialed at the moment where it removes recycled IgG antibodies from circulation, thus leaving more platelets in circulation. A less toxic/drastic approach to the problem would be awesome!
I'm also surprised there has been no success in identifying the root cause of ITP. Knowing how it occurs might give some clue in the cure approach - or maybe I'm thinking more like an engineer than a medical researcher.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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8 years 2 months ago #60006 by Sandi
Replied by Sandi on topic Anyone tried Dapsone or Danazol recently?
Darcher - you made me chuckle. Every engineer I've ever seen here has thought that way...that ITP can be solved like a mathematical equation. As far as I know, none of the 100* autoimmune disorders have been solved yet. It's just not that simple. I was diagnosed in 1998 and I can tell you that ITP has come a very long way since then. So much more is known now, but it still has a long way to go.
The following user(s) said Thank You: darcher
  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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8 years 2 months ago - 8 years 2 months ago #60022 by Hal9000
Replied by Hal9000 on topic Anyone tried Dapsone or Danazol recently?

darcher wrote: ... Hey Hal. That's the frustrating thing - we're all a bit different

Yes, while reactions to drugs are unique person-to-person, the affects of drugs on ITP is predictable.

darcher wrote: ... I also like the sound of the new ARGX-113 drug being trialed at the moment where it removes recycled IgG antibodies from circulation, thus leaving more platelets in circulation. A less toxic/drastic approach to the problem would be awesome!

I've not heard much about ARGX-113. Do you suppose that would be regular treatments?
Another recent drug of promise is 'Letolizumab' which Rob16 described in this post . Reference my comments to his post there.

darcher wrote: ... I'm also surprised there has been no success in identifying the root cause of ITP. Knowing how it occurs might give some clue in the cure approach - or maybe I'm thinking more like an engineer than a medical researcher.

In my ITP learning travails I have come across theories as to how ITP occurs. I've lost the link but one theory goes something like this.
Take for example flu viruses. There are many mutations, most different from year to year. If your immune system sees a virus today that is the exact same virus as in years past, it will successfully ward off the virus with little effort. There are already circulating antibodies. Your body continues to produce antibodies for that strain for years. Each time that strain comes along again, there is a refresh which reinforces the memory for that antibody.

If a flu virus comes along that your immune system has never seen, it has to start mutating its antibodies until it matches the new strain. This can take time and causes extended illness.

Now consider a permutation during the period of antibody mutation for a new virus that ends up attacking platelets. Realize that old platelets are being consumed all the time and concurrent to flu infection through 'Phagocytosis'. Some platelets are mixed in with the flu virus.

Once platelet destruction is learned, platelets are attacked continuously - even if these antibodies never helped kill any virus. The platelet antibodies are just mistakes in trying to figure out how to kill a new invader. Because platelets are always being produced, the memory for platelet antibodies is renewed constantly - no chance in ever forgetting how to kill platelets.

Anyhow... have you seen the PBS show: Cancer, emperor of all melodies? Fascinating. At the end they made a startling prediction. Something along the lines of, in the next 10 years medical science will make a greater contribution to human health than the previous 100 years combined. Wow, that is saying something.

It appears all branches of science advance in a logarithmic, as opposed to a linear, manner. Cheers!
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8 years 2 months ago #60023 by darcher
Replied by darcher on topic Anyone tried Dapsone or Danazol recently?
Hi Hal,
Thanks for the heads up on 'Letolizumab' - I'll have to check that as well.
Thanks also for your take on the root cause. That makes a lot of sense, and would be difficult to reverse given its playing to the immune systems ability to learn and adapt. I'll definitely look up the PBS show. Another show I saw last week in Australia was called 'Ask the Doctor'. It followed the path of young boy with a genetic disorder that resulted in a blood issue (which sounded a LOT like ITP and severe) - from his genome, they used Crispr to fix the genetic DNA, implant this in some mice, and they now synthesize a drug from the mice that he takes which alleviates his condition completely. It doesn't cure it, but fixes it while he has the drug specially synthesized for him ( iview.abc.net.au/programs/ask-the-doctor/DO1625V008S00 )
Watching this particular episode, I can't help but feel scientific knowledge and discovery is cracking along and I can't wait to see what comes next.
  • Sandi
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8 years 2 months ago #60024 by Sandi
Replied by Sandi on topic Anyone tried Dapsone or Danazol recently?
Here are several theories about what might cause ITP:

www.pdsa.org/about-itp/causes.html

Antibodies do come and though though.
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8 years 2 months ago #60027 by Hal9000
Replied by Hal9000 on topic Anyone tried Dapsone or Danazol recently?
Wow darcher. Had to do some work around's but got to see the episode. Human health issues are going to be vastly different when DNA modification is common place. Kinda scary - lots of potential for unintended consequences. The boy's condition of the immune system attacking both red blood cells and platelets I think has a different name. Doctor Sandi, errr ahh I mean Sandi, likely knows what it is ? ?
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8 years 2 months ago #60028 by darcher
Replied by darcher on topic Anyone tried Dapsone or Danazol recently?
Hi Hal. Yep - It's pretty amazing whats being done, however I'm not sure I want to first :)
  • Sandi
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8 years 2 months ago #60029 by Sandi
Replied by Sandi on topic Anyone tried Dapsone or Danazol recently?
Yes, Hal. It's called Evans Syndrome. White cells can also be destroyed.