We have a man's Forum. are our issues different

Hi guys, I was Dx with ITP 11y ago so I've been on this site for a while - just not always active in posts. My first ITP episode was Dx as part of a routine physical and after being unresponsive to treatments we went with the splenectomy. It worked.... for almost 10y and came back about a year ago. This time Rituxan was the Rx and it pushed me to around 300.

I was reading the discussion re testosterone levels and it leaves me wondering?? I had never heard of that being a consideration. I'm 59 and wonder - does anyone have any good links to discussions of low testosterone and health. I'll start googling but there are likely many to sift through before I find the best and easiest to understand.

Glad to see there is a "Mans" fourm!! There is comfort and reassureance talking to fellow ITP'rs but men and women have different issues with ITP so it is great to converse with other men about these issues. I do not have time to go into my ITP life right now but I will be back with my story. I am on Testosterone thearpy.

I'm turning 26 next week and I have been living with Chronic ITP for over 19 years now. I have gone through all the treatments possible, except for surgery, without any luck and the highest count I got was only 110. I stopped seeing my doctors for over 2 years now, and currently trying to continue to live a normal life.

My counts usually play around 70's to 90's but every so often they go down to a mere 30's, that's when i begin to exhibit symptoms like dizziness, fatigue and sometimes increase in respiratory rate.

For the most part of living with this illness, i have observed that throughout the years I am growing considerably weaker. At first I thought It was only because I lack the right exercise but I realized the weakness I am feeling is not the kind you feel after a good days work.

Last time I checked, my doctor told me that there was nothing anymore they could do but monitor my counts, as well as other symptoms I might exhibit since I am not amenable to have surgery. But even if that's the case, It didn't stop me from being who I am today. Although at the back of my mind I worry sometimes that a day would come where I would eventually succumb to ITP.

For now though, I believe we should try to enjoy living our lives to the fullest extent.

Welcome. You have been dealing with ITP for quite a while! Keep up the positve attitude. I feel that goes a long way with any diease/disorder. Have you ever had your Iron or Testosterone levels checked? Both my levels were low. Once I started taking Ferrous Sulfate, I started feeling more energy. My problem is taking it consistantly. You know guys hate to rely on a pill to feel better. Get that thought of succumbing to ITP completely out of your head!! Death from ITP is quite rare.
Yes, we should all enjoy life to the fullest. Anger and stress is such poison to our bodies!! I came as close as I have ever been to acting on a road rage situation the other day. It took me a few hours to calm down. It was not worth the stress at all!!!

tlanger wrote: So, my last question of this note... what does everyone do for hobbies now that they have the ITP? I keep being told what NOT to do, so I have to get a little creative. T

The same things I always did. I will not be a victim of ITP!

You already figured out to use extra protection if you are engaged in a high risk activity, beyond that just live your life. If it ends earlier than most at least you won't have sat at home wishing.

Hello guys

I'm a 36 year old man, diagnosed with ITP on may 2012. On September 2012 I went on Prednisone until January 2013. Because my platelets went from 55K (May/2012) to 18K (Sept./2012). Dosage lowering on monthly basis as my platelets increased, my platelets came above 162 K. I was so happy about it. After being on the final 10 mgs of prednisone the hematologist decided to release me from prednisone. Prednisone free platelets went to 140K. I got a little cold my platelets went down to 125K. Few months later my platelets had been stable above 125K. I'm happy about it.

I'm back into business, part time. But I've been having some fatigue and few dizziness waves for a couple of weeks.

I only wanted to say hello and introduce my story.

Health and good vibes

Reboot

Hi Reboot!

It sounds like you are doing fine now. Just live your life and don't sweat it! ITP sucks but it is what is and it should not be allowed to dominate anything!

I am soon to be 60. My ITP was found on my annual physical. I have never been symptomatic. My counts are usually in the low 40's although I did have a spell that they were in the 20's. I have done IVIG and prednisone with no real luck. Right now I am stable and doing nothing. Count as of Monday was 42k. I am good with that.

I am age group triathlete and distance athlete. I am not that good but I like to compete. I train about 3 to 4 hours a day. I am tired more now than I used to be but with the training I don't what to blame more, my workouts, or the ITP. It is probably a mix. But I keep going! I do whatever I want to do within reason. The real extreme stuff I have let go but I will race triathlon until I can't go any longer.

You hang in there! Your counts are great! Stay in touch!

Jeffrey

Hello again guys

Thanks Mr. Jeffrey for your reply.

Truly I know I've been lucky with my platelets count and I'm very grateful for that.

Keeping a positive attitude even throughout these fatigue and dizziness waves. That seems to come and go.

I've never been the athletic type of guy, but did play it out safely and the most healthy. Vices free, only married once with one only girlfriend. Did traveled a lot due to my work, to the states and the Caribbean.

It was about five years ago during one of my trips when I woke up early to work, that I had my first nose-bleed. Funny it was I never bleed before. Foolishly I completely ignored it. Wait until bleed stopped and left to work. Then I made sure my medic checked me annually. Nothing seems to be wrong. Last year I went for my annual routine check-up and found my trombocytopenia.


Then I went through many test: Ppt, B-12 Omega 3, H-Pylory, Bone Marrow, and others. Results were normal, clear, negative.

A year later, after my ITP diagnosis, I'm taking care the better of my health, dieting, and exercising.

Positive attitude.

Health and good vibes

Reboot

Reboot,

You sound great! No more issues? Stay in touch!

Jeffrey

Yeah! Doing great! Maybe some fatigue which seems to come and go, same for the dizziness waves. But doing dieting and some exercises should do the trick.

I've also taken my hobbies back, music, drawing, and some electronics.

Health and good vibes

Reboot

Same to you! We have very similar hobbies!

A positive attitude with this disorder is some pretty powerful medicine we can give ourselves!!! Negative attitude is poison!!!

True.

Health and good vibes.

Reboot

How are you all doing? I have an oncologist visit in a couple of weeks, I don't think it is going to be good, but who knows?

Jeffrey

I did sign up for a 100 mile triathlon in June. Probably not the smartest thing I have done lately!

Jeffrey

It's now 4 months since Jeffrey's last comment to this forum and that was apparently the last from any guy. So come on the winter season is almost over for most of us and time to come out of our caves after hibernation. Are any of us thinking of plans that our wives have already decided on for the seasons ahead? Come on confess who thinks they make up their own minds.

Derek!

Good to hear from you! I make every semi final decision here! I have 2 daughters and in the past we would vote on things and I would always lose. So, thinking ahead a bit, I got a male cat, Joe. For a while when one of the females were missing we could at least tie a vote. One day I went to work and they got Joe "fixed". I shut up.........

Long winter here in Indiana. Lots of snow, a record year. I am running a little outside now. I had knee surgery last fall and ran on it before I should have and really set myself back. The knee is close to shot but I am hoping to get a couple more long races out of it before it finally comes apart.

Stay in touch!

Jeffrey

Hi Jeffrey,
Will stay in touch. Here in Scotland we have had 3 months of gales, almost continuous rain and cold (but not by your standards this year.). Your cold and snow was big news here in the UK. Hope you get a better spring!

Derek

How strange the weather is. In the very small distance between Scotland and London the weather has been completeley different which is so strange. We haven't had winter at all here and we are now well into spring with temperatures almost reaching summer levels.

We received another 12" of snow today! I give up! Going to Aruba in September! Please hurry.....

Time for a thaw? Aruba sounds like the place to do it!

Hello everybody

I´m here to say hello. Best wishes for everybody here. Actually Im undergoing a Dexamethasone treatment. On my 4th (fourth) course. All I can tell is that it has not being easy. Dealing with the secondary effects of the medication is being fairly hard.

My hematologist suggested me to remove my spleen but I rather explore other methonds like medication. Any advice will be very appreciated.

Thank you


Best wishes and health

Reboot

Hi reboot,
Just a quick comment on splenectomy which seems to one of the first things suggested after being on steroids . Those things can be nasty and I remember feeling my brain was in a fog and at that time was unable to make any rational discussions for quite a while. So I read as much as I could about having a healthy organ removed on what could of been a futile treatment and take antibiotics for the rest of my life. I decided not to have a splenectomy as there are plenty of other treatments now becoming available. The prevailing medical attitude depends on where you live ,what you can afford and several other factors. So far I have not regretted my approach but ultimately you alone can take that step. So my advice is to hold off for now . There has been a great deal of discussion and personal advice in several topics in this Discussion Forum.
Best of luck, Derek

Reboot!

Excellent advice from Derek! Keep us posted on what transpires.

Jeffrey

Hello Dereck Jeffrey

Very appreciated for your advise. I will keep in touch for my treatment with Dexamethasone. Positive attitude above everything. I've been dealing with lots of hiccups, mood swings, and lower defenses. Hope this 4th course be more friendly.

Once again

Best wishes, health and good vibes

Reboot

Hello everyone,

I am new to this . Diagnosed in 2012. Man cave is a great idea. My 15 month period of remission is over. Back on steroids. Doing the homework on what can be next. All of this is good info. Stick together, be strong.

Bob

Bob,

I was diagnosed in 2012 too. Not doing anything right now. Just had my first crash and I have rebounded naturally. I was down to around 15. I am getting another CBC on Saturday. I am around 25 now.

I am still active and doing what I want to do. Pred did not work for me except for a weight gain!

Jeffrey

Hi People

It has been more than 2 Years since I have come here but that more because I have been busy. I am a 27 year old guy and have had ITP for about 4 Years now. I have tried everything allopathy or conventional medicine has to offer except splenectomy and nothing has really sustained for a while. For the past 2 years I have tried homeopathy and that has also,not really helped much. My counts are generally below 10k and the highest I have hit in the past 2 years is 18k.

I did manage to do an MBA in the past 2 years and have played sports( while obviously being a bit careful) and managed my routine life without much of a problem ( I did not feel tired or fatigued out and I personally believe it is all in our mind) . That being said I am still looking for treatment options as my counts are not really at a safe level but am not very keen on surgery.

Any advice would be appreciated

Regards

Madridista wrote: Hi People

It has been more than 2 Years since I have come here but that more because I have been busy. I am a 27 year old guy and have had ITP for about 4 Years now. I have tried everything allopathy or conventional medicine has to offer except splenectomy and nothing has really sustained for a while. For the past 2 years I have tried homeopathy and that has also,not really helped much. My counts are generally below 10k and the highest I have hit in the past 2 years is 18k.

I did manage to do an MBA in the past 2 years and have played sports( while obviously being a bit careful) and managed my routine life without much of a problem ( I did not feel tired or fatigued out and I personally believe it is all in our mind) . That being said I am still looking for treatment options as my counts are not really at a safe level but am not very keen on surgery.

Any advice would be appreciated

Regards

Hi Mad!

I am just a little younger than you! Well, more than a little! I am active, swim, bike, run etc. I do not treat. I try to stay fit and eat right. Works for me. The tiredness is real at least for me. It was one of my signs that led me to ITP. You are very right in the mindset that you have to not let it bother you. You just live your life and keep right on going! It is great to see that you are doing that! What can any of us really do? We live with it and manage it, I am not going to let ITP manage me! Where did you get your MBA at? I graduated from IU Indiana University.

Jeffrey

Hey guys

New to the forum so I thought I would pop in here to say hi.

I have to admit that seeing other suffering from fatigue has made me feel better about myself.

I was diagnosed when I was 17 but didnt have any issues until I was 32 after 6 of the most stressful months of my life.

Ever since then I have suffered on and off with fagitute and with 2 small children it can make life very difficult.

I am due to see my hemotologist this thursday as my platelets dropped to 5 and I am currently on 80mg of preds and I am going to ask about the fagitute and see what she says