New Catagory Suggestion: Men with ITP

New Catagory Suggestion: Men with ITP 11 years 8 months ago #18053

halork Offline Posts: 9 Thank you received: 2	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 11 years 8 months ago #18058

eklein Offline Posts: 1353 Thank you received: 167	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 11 years 8 months ago #18059

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2372	I'll go to the sources that be.
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Re: New Catagory Suggestion: Men with ITP 11 years 8 months ago #18116

Rhiannon Offline Posts: 317 Thank you received: 15	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 11 years 8 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 11 years 8 months ago #18154

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2372	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 11 years 8 months ago #18157

Tad Moody Offline Posts: 98 Thank you received: 6	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!
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Re: New Catagory Suggestion: Men with ITP 11 years 8 months ago #18347

halork Offline Posts: 9 Thank you received: 2	LOL! I'm all for the Man Cave!
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Re: New Catagory Suggestion: Men with ITP 11 years 8 months ago #18355

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2372	Ha ha - I'll pass that along.
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Re: New Catagory Suggestion: Men with ITP 11 years 8 months ago #18460

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2372	Sorry to keep you in suspense, guys. The new section has been approved. We just need web guy to create it. Bear with us. The following user(s) said Thank You: halork
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Re: New Catagory Suggestion: Men with ITP 11 years 8 months ago #18543

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2372	Guys - your Man Cave has been built! Enjoy and BEHAVE! The following user(s) said Thank You: halork
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Re: New Catagory Suggestion: Men with ITP 11 years 8 months ago #18634

halork Offline Posts: 9 Thank you received: 2	Who, us? 0:-)
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Re: New Catagory Suggestion: Men with ITP 11 years 8 months ago #18650

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2372	Cute.
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Re: New Catagory Suggestion: Men with ITP 11 years 5 months ago #20249

lshersh Offline Posts: 1 Thank you received: 0	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 11 years 5 months ago #20254

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2372	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 11 years 5 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 11 years 5 months ago #20598

Sandi Offline Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18 Posts: 12436 Karma: 11 Thank you received: 2372	I think you should start a new thread in the General Section. You'll get more responses there.
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