TOPIC:

Well okay we now have our own forum. But are our issues with ITP that different. I was diagnosed 15 months ago. I may have been battling the symptoms for at least 6 months earlier. I really have problems with the fatigue. I am tired of being tired. I keep wondering if testosterone levels are out of wack I find little information whether that can be an issue. Has anyone been tested and tried testosterone therapy. I am 62 and it seems the new internet health thing for men is improving your testosterone.

Clem

Well, I suggested this forum primarily from my own experience. After I was diagnosed with ITP and prednisone was not controlling my platelets, my hematologist put me on Danazol. My doc mentioned 2 things at the time: since it is a male hormone it is not generally prescribed for women due to undesirable side effects, and that men had shown better response to it than women. In my case, it did the trick. My platelet count rose and has stayed up since I was weaned off the Danazol.

For whatever reason, the majority of ITP cases are women, and much of the discussion here is by women and discusses their treatment. I found very few discussions about Danazol and treatment options for men in general. I thought a special forum here would be a good place to focus discussion about treatment options for men and encourage men to have a discussion with their doctors about Danazol and any other options that might be available to men that would not be so great for women. Also, there may well be treatments that are used for women that are not so great for men.

Finally, there are all sorts of other issues relating to side effects, relationships, work and family that men could discuss here. I hope we can get some discussions going. Welcome to the Man Cave!

I'm 62 and was diagnosed 12 years ago with ITP. My experiences with the drugs I've taken has been like most other responses on the board. Some work better than others. Danazol did improve my platelet count but the side effects were miserable. There was swelling in my feet and ankles. I couldn't walk a mile without my ankles hurting. After several months, it quit working. I was given Prednisone. It had some side effects but I thought it was the "Fountain Of Youth". I didn't have any extra endurance but had a lot more strength. I could do 8 chin-ups (full range of motion) and go 2 inches over the top of the bar. No knee pain or ankle pain. No extra endurance for jogging but walking/jogging was good. As the Prednisone dose decreased so did my strength and chin-ups. This is my present drug cocktail. Cyclosporine/Prednisone/Bactrim/Acyclovir. Platelet count has remained fairly stable. Anywhere from 30 to 55. The prednisone dose has been decreased to 10mg Sat/Sun and 5mg Mon-Fri. I been jogging/playing tennis since my 20's and don't have that endurance any longer but I don't think it fatigue just age.

i was diagnosed in 2007 after my heart attack my count was at 11 in 4 years it has gone up to 18.i am very tired all the time.i have had no drugs as of yet dont want the side affects .my heart doc is worried about me and my count he is getting me a new hemo close to home.i to am trying to boost my energy level with no avail.i am almost 50

I talked to my chemo about getting testosterone treatment. He first wants to check my current levels. Did anybody have your testosterone levels checked before you took Danazol?

I never had my testosterone levels checked, so I can't tell you what kind of effect that would have. Good luck!

I was diagnosed with ITP in 1973 and have had everything from spleenectomy, multiple accessory spleenectomies, high dose prednisone, imuran, danazol, cyclosporine, ivig, rotixin to name some. With my current treatment of prednisone (10mg every other day and imuran) my cound holds around 40.

I have found over the years that when I get any infection I get a count - it is usually down to around 2-5. I have also found that when my count is in the teens or lower I am tired all the time.

The thing that I feel helps me the most is to keep my outlook as positive as possible in my daily affairs. Stress and anger only seems to make matters worse.

I turn 61 in 4 days and life could not get any better.

Keep positive and stay healthy.

I think our issues are different... if for no other reason, there are so few of us at the support meetings, and discussion about women's issues relative to ITP, bleeding, etc, while very important, obviously don't pertain much to us given our various plumbing differences.

I, too, have frequent, heavy fatigue, which makes this whole earning a living thing interesting. Don't know about testosterone... but, as a result of another immune system thing, I also have cirrhosis of the liver, and the many meds I am on can go the same direction. What I find interesting is in my discussion with my HEMOC, he noted that, in his experience, immune system issues tend to "travel in multiples". Anyone else with this experience?

By the way, just back from a MRI session at Mayo... one doc mentioned it was fascinating that my spleen was actually larger in size than my liver (livers get smaller with cirr) in many views. He was not so happy to find out I race bicycles off road, until I explained I wear my helmet, body armor for the sole purpose to cover up my spleen and liver, and other safety goodies. He's happy now. Likes the fact I lost 200+ pounds riding my bike and watching my diet.

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

I got diagnosed with ITP back in 2008. Went in for knee surgery. I was very tired and week and weighed over 385lbs. I was on pain pills and steroids, pain in chest. Also on Cymbalta for anxiety. Found out that platelets were 1800 on the table. They cancelled surgery. After tons of prednisone my count went up. I got off of every pill i was taking and felt great for 2 years, lost 100lbs. But it came back. Big dark bruises and super tired. But count has bounced back up great after 2 weeks on Prednisone. Bad side effects though, major back pain and can't sleep. I say a prayer for you all.

That's awesome about the weight... know from experience it isn't easy... simple enough, just not easy. We all need to pray for each other. I have come to realize that no one gets a simple walk in this life... just appears we get one that's more difficult a lot earlier than most! Guess that means God has something extra special for us to do! T

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.....