An Introduction - My 16 years with ITP

Greetings from Canada!

I thought I would introduce myself and give some history on my 16 year battle with ITP.

I've been visiting this site for a number of years but decided I should finally join up and contribute to help others and seek info for myself.

So my history...

In 1995 at the age of 18 I woke up one morning and my body was covered in petechiae. I figured I just had a rash from seomthing I came in contact with but at the advice of my parents I went to the hospital. At that time my platelet count was 20 and after a short 1 day stay in the hospital with no admission I was diagnosed with acute ITP and sent home with a tapering dose of prednisone. At that time I have very little follow up, I saw an internist once and within a month my prednisone was stopped and I settled in with a platelet count of ~200.

On my merry way until the 23rd of December 2006. The day before I had been doing a bunch of cleaning around the house getting ready for the holidays and noticed a few large bruises on my arms. I had through nothing of it becuase I had been crawling under the stairs getting out decorations and such.. and since ITP was such a distant memory I did not even think about it. However on the morning of the 23rd I woke up to petechiae on my chest and arms and knew what I needed to do. I went to the hospital and made the admitting that I had ITP. I was admitted with a count of 6. I was in the hospital for 3 days and was treated with IVIG and prednisone. By the last day my count was over 100 so I was released on boxing day with a tapering prednisone dose. Once again I had very little follow up. I saw an internist a couple times over the next month as my prednisone was tapered and my counts climed to ~150.

Now to the 20th of November 2010. Once again I woke up to petechiae on my body. Now I had got a new family doctor in 2008 and he was very interested in my ITP, he had me go for bi-annual blood tests for a CBC but he gave me a few stat test forms just incase I noticed any symptoms. I took my req and went to the lab before lunch on the saturday. Within 2 hours I had a call from my family doc to go right to the hospital.. my count was less than 2. Again I was admitted for 3 days and went through IVIG and prednisone. By my release my counts were ~100.

The nice thing this time, is a Hematologist was on call and in the emerg when I came in and she was asked to see me. She has taken me on as a patient and for this I am very happy.

So I continued a tapered dose of prenisone for almost two months and was going for weekly tests. My counts ranged from 150-200.

Now we come up to present, a week ago on the 18th of April I went for my weekly test and was in to see my Hema on wednesday. My counts had dropped to 4! Now the nice thing with a hema it means I no longer have to mess around with the emergency room at the hospital. The next day I was into day medicine to get dosed with IVIG. A week later and my counts were only up to 16. It seems the IVIG did not work this time! So I am currently on a 4 day dose of 40mg dexamethasone to try to boost things up. If this does not work it will be back from more IVIG next week and a course of prednisone.

What scares me now though is she is talking more invasive action such as spleen removal.. but she does not want to even think about that until we try everything else. As long as I can get back towards 20-25 I will feel better so I am not as woried about bleeding and I would be very happy if I can even maintain 50.


Now these are my observations.. eveytime my ITP flares up it always seems to be after an infection/ilness and a course of antibiotics. I am tired all the time, no matter how much I sleep and even when I have "normal" platelet counts. The other thing of interest is my only "tells" are petechiae and some brusing. I have no nosebleeds, bleeing gums, bloody urine, black or bloody stools, nothing at all, and even my petechiae only seems to show if my counts are less than 10, so without regular bloos tests I don't have a lot of warning that things are going bad.

Other interesting items? My sister also had a bout of ITP at 18 but she has not had a relapse. My Mother was also diagnosed with ITP in 2006 and was treated IVIG/prednisone but to date has not had a relapse.


I've come to accept the fact that this is now a chronic disorder for me that I will have to deal with for the rest of my life. I think the hardest part for me now is that I have two small children (4 years and 18 months) and I just don't have the energy to play with them as much as I would like to. The other fear is my mortality.. now I know ITP has a low mortality rate especially at my age (34 in june) but I am still scared of something happening and not being there for my kids.

The other challenege I find is that people around me (other than my immediate family) really understand what is wrong with me. On the outside I look just fine, walking wounded I always call it. And it is hard to explain what is wrong and why my energy levels are always so low. I am happy that the company that I work for is understanding and never gives me any grief about time off for treatments/doctor visits. I am working on a blood drive at work right now to try to get as many people as I can to donate blood, not only does it save lives it saves my life and that helps get others on board when they know someone personally that uses blood products.

So in a nutshell that is my story, thank you for taking the time to read it. Any advise the user group may have ite very much appreciated, and if I may be of help to anyone else please let me know.

All the best!
Greg Kubasek

I would also like to ask if there are any others on the forums from Calgary? It would be nice to chat/meet with someone localy in the same situation to trade notes on doctors/hospitals etc.

Greg

So glad you could share your story with us. Like you, I went a long time in remission (25 years!) until just recently. I just wanted to encourage you that this board is so supportive and very informative. Read read and read some more. But also, do share what you're experiencing too. I think we learn about this disease, come to peace with it (at times) and are able to live with it. I think it's because through this board, we don't feel so isolated and alone.
So glad you could share. Keep us updated!

It sounds like you have familial thrombocytopenia which isn't strictly ITP. There's an article here called "Inherited thrombocytopenia: when a low platelet count does not mean ITP" which might be a start.

bloodjournal.hematologylibrary.org/content/103/2/390.full

You need to be careful to be sure of a correct diagnosis before thinking of taking your spleen out. Sad to say though that there aren't many doctors who know much about it.

Hi there Greg!

The first thing that came to my mind while reading your story is that you've nearly always had IVIG and Prednisone together, which seemed to work. This past time, you only had IVIG and it did not work. Is it possible that you never did respond to IVIG and it was the Prednisone that brought your counts up? If so, I'd nix the IVIG as an option.

You seem to always respond well and get a few years of remission. It may not seem like it, but you are one of the lucky ones who does not have to deal with it all the time. I'd totally forget the splenectomy idea and keep managing it the way you've been doing it. You appear to do quite well. There are other treatment options to think about if need be, and hopefully your doctor is familiar with those.

My sister also had ITP when she was 16. She remitted after a year. I ended up with chronic ITP about 20 years after she did.

Try not to worry about dying from ITP. As long as a person responds, there is no real risk of bleeding to death. You also seem to be able to handle low counts with few symptoms (no real bleeding). I was the same way, but did have some whopper bruises at times. The real risk is with refractory ITP, but even most of those patients do fairly well with low counts.

As for other people, I didn't ever feel the need to tell anyone, so I can't help you there. I considered it a personal issue, so no one outside of my immediate family knew. A few people at my office knew because of the appointments and such, but that was it.

Have you ever had any other testing - B-12, thyroid, etc...that could account for fatigue? Some people automatically chalk it up to ITP, but there could be another cause. I struggle with low potassium, low magnesium, low ferritin, low B-12 and low Vitamin D. All of those are known to cause fatigue.

Thanks to all for your comments. They really are appreciated.

I have very much consider the fact that my condition could very well be inherited, I've spoken with my hematologist about it and she has not given it much merit. The positive thing is that she only mentioned spleen removal as a last and drastic resort, she wants to go through as many other options to get my count stabilized before she would consider something so drastic.

I was thinking today about the association of IVIG and prednisone in my past treatments. It did not even come to my mind or my hema when I met with her last week. I am interested to see how my body reacts to the dex and if the counts climb. Her plan is that if this gets me up 50+ she will start me again on a tapering dose of prednisone and keep me at a low dose until everything gets level again.

I have gone through a lot of testing since my hema started teeating me after my bout in Nov. of last year. Thyroid, arthritis, other autoimmune diseases and the like so far everything has come back negative. Once i get past this current hurdle I want to ask her to explore anything else she may not have considered for the fatique, because I find it is very hard to live with sometimes.

I'll have to ask how many other ITP patients my Hema has but she seems to be very familiar with the condition and was very eager to take me on as a patient as my condition seems to be very atypical. As I understand most people who have it younger have an acute case with it never coming back and most adults have it chronic with ongoing treatment required. Since mine has come back a few times but then i go into extended periods of remission she finds it very odd. Although this current bout came along really quick.

What scares me the most I think is how low my counts have to be before I show any physical symptoms but they are mostly the petechia. I have never had any other bleeding issues. But as my hema tells me she is not concerned with surface bleeding, only if I get uncontrolled bleeding from eyes, ears, nose, bowels etc etc.

All I know right now is I can't wait to finish this 4 day high dose of dex, my head is killing me, I am eating everything in sight, I feel like crap and I am very cranky.

Greg

Hi Greg,
Maybe more people than we know get drops in platelets when they get sick or antibiotics. Not everyone gets the rash - I never did even at counts of 8k.
Erica

Greg, seriously, mention having your D checked. There have been a lot of people here lately with low Vitamin D. I was having some pretty severe fatigue and muscle weakness due to my level being low. I'd get so weak I couldn't pick up a cup of coffee without my hand shaking from the weight. Sitting at my desk at work was even too much of an effort. I've been on a high dose Vitamin D script three times now in the past year and my levels still are not where we'd like them. The funny thing is, before I even had my D tested, I had been taking 800 IU's of D daily for a year or so. It didn't do anything, as I found out. I've been on this high dose for 8 weeks now and am just starting to feel a bit better.

I'm not saying this is your problem, just that sometimes you have to keep looking and maybe you'll come across something. I battle fatigue and weakness all the time and my counts are normal (I also have Lupus), but I still keep looking for reasons.

Being diagnosed at 18, you were technically an adult, so chronic ITP isn't all that out of the ordinary. There are some people here who were diagnosed as children and still have ITP. Sometimes it happens. I am also one who has had several remissions. I'm on my longest one yet - seven years. This occurred after treating with Rituxan twice.

I never know my counts are down either until they are under 10. That's when I get symptoms. I usually have bruises all the time because I also take aspirin, so I can't go by that. I don't worry about it though because I've been low before and survived, so I know I'd be okay if it happened again. May be a false sense of security, but I got over the fear a long time ago. Maybe monitoring every three months or so with a CBC would be the way to go for you when you are in remission. Then you could 'catch' it before you get too low. The thing is, most don't treat above 20 or 30 anyway, so finding out sooner isn't much help except that you'd be aware you're on the way down. You seem to know when you're getting into trouble though.

Hang in there on the Dex. It can be wicked!