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TOPIC: New Catagory Suggestion: Men with ITP

New Catagory Suggestion: Men with ITP 8 years 3 months ago #18053

  • halork
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Hi - I thought I'd suggest this new catagory... Since most of the people diagnosed with ITP are women, I think a group for discussion about symptoms and treatment of ITP specific to men would be valuable. There's already a group for "Secret Women's Stuff," maybe Men's discussions aren't so secret? :)

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Re: New Catagory Suggestion: Men with ITP 8 years 3 months ago #18058

  • eklein
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Great suggestion, Sandi can you make it happen?
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: New Catagory Suggestion: Men with ITP 8 years 3 months ago #18059

  • 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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I'll go to the sources that be.

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Re: New Catagory Suggestion: Men with ITP 8 years 3 months ago #18116

  • Rhiannon
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Good idea as one says there is secret women's stuff and a teenage/children section so why not an area for men too? :)

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Re: New Catagory Suggestion: Men with ITP 8 years 3 months ago #18152

  • halork
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Another thing that made me suggest this category: Treatment options can vary for men and women. For instance, after prednisone did not work for me, my hemo switched me over to Danazol. He indicated that it is a male hormone, and as such not generally prescribed for women, but some men had shown better to response to it. I am one of those lucky men, and have been in remission now for nearly seven years (knock on wood). In my discussions with others, though, it seems that doctors are jumping straight from prednisone to splenectomey, and I often wonder if any men are presented the Danazol option that worked for me.

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Re: New Catagory Suggestion: Men with ITP 8 years 3 months ago #18154

  • 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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There are a lot of women who have tried Danazol. I was one of them. I broke out in hives though and had to quit. Side effects can be worse for women, but we do use it.

You're right, some doctors do jump from steroids to splenectomy. That seems to be changing slowly as the years go by.

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Re: New Catagory Suggestion: Men with ITP 8 years 3 months ago #18157

  • Tad Moody
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I like it!

We'll call it "the mancave", have an initiation, secret handshake, sit around and watch sports, drink too much beer, burp and scratch ourselves, boast who has the grossest looking bruises, and post that so-and-so "just left" if a guys wife or girlfriend posts asking where he is! :P

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Re: New Catagory Suggestion: Men with ITP 8 years 2 months ago #18347

  • halork
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LOL! I'm all for the Man Cave!

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Re: New Catagory Suggestion: Men with ITP 8 years 2 months ago #18355

  • 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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Ha ha - I'll pass that along.

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Re: New Catagory Suggestion: Men with ITP 8 years 2 months ago #18460

  • 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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Sorry to keep you in suspense, guys. The new section has been approved. We just need web guy to create it. Bear with us.
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Re: New Catagory Suggestion: Men with ITP 8 years 2 months ago #18543

  • 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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Guys - your Man Cave has been built! Enjoy and BEHAVE!
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Re: New Catagory Suggestion: Men with ITP 8 years 2 months ago #18634

  • halork
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Who, us? :whistle: 0:-)

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Re: New Catagory Suggestion: Men with ITP 8 years 2 months ago #18650

  • 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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Cute.

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Re: New Catagory Suggestion: Men with ITP 8 years 2 days ago #20249

  • lshersh
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I will join that group: Men with ITP-

maybe as a subcategory what about Men with Acute ITP??

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Re: New Catagory Suggestion: Men with ITP 8 years 2 days ago #20254

  • 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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You could start that thread in the Cave Man Section. Ooops, I meant the Man Cave Section.

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Re: New Catagory Suggestion: Men with ITP 7 years 11 months ago #20597

  • guner71
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Fist time on this website. I am a 40 year old male who was diagnosed with ITP in 2008 and have had a Splenectomy because of it. I took prednisone for 3 months and realized if I didn't get off it I may never be able to lose the weight due to water retention from the drug. Before the treatment, my platelets were only at a couple thousand. I am currently at about a 50,000 to 60,000 platelet count.

I was wondering about one thing though, do people with this disease go through depression and a loss energy? The reason I ask is since I have had the operation, I have lost a lot of desire for certain things that I once loved and my energy level never came back up the way I hoped it would.

The doctors say that I am fine and there is no explanation for this. What do you people think?

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Re: New Catagory Suggestion: Men with ITP 7 years 11 months ago #20598

  • 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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I think you should start a new thread in the General Section. You'll get more responses there.

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