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New Catagory Suggestion: Men with ITP

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12 years 7 months ago #18053 by halork
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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12 years 7 months ago #18058 by eklein
Replied by eklein on topic Re: New Catagory Suggestion: Men with ITP
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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  • 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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12 years 7 months ago #18059 by Sandi
Replied by Sandi on topic Re: New Catagory Suggestion: Men with ITP
I'll go to the sources that be.

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12 years 7 months ago #18116 by Rhiannon
Replied by Rhiannon on topic Re: New Catagory Suggestion: Men with ITP
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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12 years 7 months ago #18152 by halork
Replied by halork on topic Re: New Catagory Suggestion: Men with ITP
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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  • 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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12 years 7 months ago #18154 by Sandi
Replied by Sandi on topic Re: New Catagory Suggestion: Men with ITP
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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12 years 7 months ago - 12 years 7 months ago #18157 by Tad Moody
Replied by Tad Moody on topic Re: New Catagory Suggestion: Men with ITP
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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12 years 7 months ago #18347 by halork
Replied by halork on topic Re: New Catagory Suggestion: Men with ITP
LOL! I'm all for the Man Cave!

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  • 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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12 years 7 months ago #18355 by Sandi
Replied by Sandi on topic Re: New Catagory Suggestion: Men with ITP
Ha ha - I'll pass that along.

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  • 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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12 years 7 months ago #18460 by Sandi
Replied by Sandi on topic Re: New Catagory Suggestion: Men with ITP
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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  • 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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12 years 7 months ago #18543 by Sandi
Replied by Sandi on topic Re: New Catagory Suggestion: Men with ITP
Guys - your Man Cave has been built! Enjoy and BEHAVE!
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12 years 6 months ago #18634 by halork
Replied by halork on topic Re: New Catagory Suggestion: Men with ITP
Who, us? :whistle: 0:-)

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  • 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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12 years 6 months ago #18650 by Sandi
Replied by Sandi on topic Re: New Catagory Suggestion: Men with ITP
Cute.

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12 years 4 months ago #20249 by lshersh
Replied by lshersh on topic Re: New Catagory Suggestion: Men with ITP
I will join that group: Men with ITP-

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

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  • 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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12 years 4 months ago #20254 by Sandi
Replied by Sandi on topic Re: New Catagory Suggestion: Men with ITP
You could start that thread in the Cave Man Section. Ooops, I meant the Man Cave Section.

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12 years 4 months ago #20597 by guner71
Replied by guner71 on topic Re: New Catagory Suggestion: Men with ITP
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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  • 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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12 years 4 months ago #20598 by Sandi
Replied by Sandi on topic Re: New Catagory Suggestion: Men with ITP
I think you should start a new thread in the General Section. You'll get more responses there.

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