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TOPIC: OK... fess up...

OK... fess up... 7 years 3 months ago #21849

  • tlanger
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I have had an opportunity to discuss symptoms and issues with a couple of you guys... but I have become convinced guys may have different symptoms than women. First, we have that testosterone thing going on, which plays along with serotonin (thanks for the help on this one Dean) and other parts of us relative to mood, energy and more. Moreover, per my hemoc, guys tend to run a bit more stable without the big crashes many women experience... not sure that's true, but suggests there is a difference in systems here. So, please fess up with your symptoms, meds and experiences. I'll try to compile all of this and provide an overview... I have a feeling ther ereally is a reason for man cave! Tom

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Re: OK... fess up... 7 years 3 months ago #21850

  • Dean
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Agree Tom!!
So come on Men start sharing. I know it is difficult for men to discuss this stuff with other men. We need to compare our issues!! Men and women were created equal but when it comes to all of the medicals issues I think we are quite different.

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Re: OK... fess up... 7 years 3 months ago #22333

  • cgoewert
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Hi Dean, tome and all you other guys.

I have not been on line much lately. Part of it is that I have had a little more energy lately. My counts have been up to 123 to 131. So now my shots of Nplate are being spread out from every 3 weeks to every 4 weeks. I am waiting to see what my response will be. Most of the time my counts had been around 80K.

I think I have to fight the male attitude of telling myself to suck it up and do not complain.

While I have more energy, I still do not feel energetic. Everything I do seems to take a lot longer to accomplish simple tasks.

I am still tired and depressed. But I also have to deal with a lot of pain since the whole ITP response has really impacted my physical fitness. A have lost a lot strength and endurance. Some of it may be serotonin or low testosterone. My testosterone are suppose to be normal. A few weeks there was a discussion on "fat sticky platelets, which really was about that the paltelets are not uniform and normal sized. And with Nplate, I may be producing more platelets, but they me be of lower quality.

Clem

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Re: OK... fess up... 7 years 3 months ago #22345

  • Dean
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Hey, Clem. Testosterone, Serotonin and Iron really play a role in my energy level. I think I finally admitted that I needed to slow down in life. I have worked nights for 18yrs and a part time job in the afternoon, twice one week and 3 times the other week. I have pretty much stopped the part time job. What kind of depression symptoms are you having? Why do you feel your Testosterone is supposed to be normal? I have also been told that "big sticky Platelets" are not the best quality Platelets as normal. I was told once that my Platelets were larger than normal so it was difficult to get an accurate count.

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Re: OK... fess up... 7 years 1 month ago #23925

  • cgoewert
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Hi Dean and all:

What kind of depression have I been having? Well I have pulled back and away from most things. But it is all the same issues that I have been dealing with for a good part of my life. I have have taken most of the current meds for depression, but my physical reaction to them are worse then the depression, tiks, flailing, anxiety, severe emotion changes, etc. My got to experience what it is like to be around someone who had explosive anger outbreaks. It turns out that I am better off trying to manage depression without drugs.

As far as testosterone, my Hemo had my blood tested and was in the mid ranges. Maybe that is not enough.

Lately I am in the mode of just being tired of the disease and tired of being poked , prodded, stuck, fluid sucked out, etc. But I know it will not. I am coming up on 2 years of treatment. What is the next phase if any?

Hope all of you are doing better.

Clem

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Re: OK... fess up... 7 years 1 month ago #23958

  • Ann
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cgoewert wrote: A few weeks there was a discussion on "fat sticky platelets, which really was about that the paltelets are not uniform and normal sized. And with Nplate, I may be producing more platelets, but they me be of lower quality.

I only just saw this and want to say that it is just not true that Nplate produced platelets are of lower quality. They are in fact of high quality as they are going to be new and large and sticky.

Edit: Oops sorry, I only just realised that this is in the men's bit. I don't get why men are different but I was accepting it nonetheless but have responded in error.

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Re: OK... fess up... 6 years 10 months ago #26051

  • jwest52
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yeah i deff agree with you no big crashes in number just slow declines..:( but hopefully rituximab will sort all this out..but i would love to hear about any effective treatment for men out there..im trying to stay hopeful and has anyone ever had Danazol?

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Re: OK... fess up... 6 years 10 months ago #26052

  • jwest52
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yeah i deff agree with you no big crashes in number just slow declines..:( but hopefully rituximab will sort all this out..but i would love to hear about any effective treatment for men out there..im trying to stay hopeful and has anyone ever had Danazol in lieu of prednisone?..

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Re: OK... fess up... 6 years 10 months ago #26056

  • Dean
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jwest52 wrote: yeah i deff agree with you no big crashes in number just slow declines..:( but hopefully rituximab will sort all this out..but i would love to hear about any effective treatment for men out there..im trying to stay hopeful and has anyone ever had Danazol in lieu of prednisone?..


Good Luck with the Rituxian!!

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Re: OK... fess up... 6 years 6 months ago #28973

  • Larry
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I'm still trying to wrap my head around all of this... two weeks ago I did not know there was anything wrong with me! My counts are still doing a roller coaster ride. I'm tired, bruised like I was in a bar fight, and usually with the prednisone I get a big wave a depression that lasts for 15-30 min. I don't feel dizzy or have vertigo but I don't feel like I'm focused either. I'm missing a lot of work (well, I wouldn't say I miss it) and just want to feel some where close to my old normal. I turn 49 this month and the last thing I need a drug that makes you gain weight. I don't have a lot of reaction to the IGIV and hopeful that Rituxan will help me hang on to safe levels for a while. Maybe a couple beers and some buffalo wings will readjust my immune system - any research or data on that? :P

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OK... fess up... 6 years 2 months ago #31597

  • DanC33
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Hi guys, haven't been on here in quite some time. But as far as symptoms go, mine have been everywhere, from horribly bad fatigue when my platelets drop to achy joints. My hematologist says that men's reactions to ITP or any other auto immune is going to be different but there hasn't been much study into this because usually women deal with this.

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