Do I even need treatment?

I am a 39 year old man, in perfect health except for an occsional flu during the flu season. I was diagnosed with ITP last month. My count is 81. I have had no symptoms (no bruising, no petechaie etc). I used to have nose bleeds all throughout my childhood. The bleeding stopped as I grew up and since my teens I have it once in maybe 2-3 years. I am quite active and have always had good health all throughout my life. The reason I came to know i had ITP was because I went for annual check up with the GP who had me do a CBC. I never used to go for annual check up till I hit 37 (when I had my son). In Jan 2010 I did my first CBC and the only thing abnormal was the platelet count which was 108 at the time. The GP asked me to do follow up tests, but I did not think it was anything serious, so I never did. Then I skipped the annual exam for couple of years and did another one last month, when we found the count had dropped further to 81. This time my doctor told me that this could be a serious condition and I should follow up on the recommended tests. Long story short, I went to a haematologist who had me do bunch of tests including Ultrasound and diagnosed I had ITP. She recommended starting Prednisone. Then I started researching on ITP and Prednisone in particular and found that its a pretty serious medication with lot of side effects. The question is do I really need any treatment?
Also, back in 2001 I had received a flyer in the mail (after I had donated blood in a blood donation drive at work) to donate platelets. So I am assuming the count would have been normal at the time. I went for the platelet donation but never finished it because I started feeling dizzy after few mins. So they stopped it and let me go.
Seems like lot of the people on this forum have far worse numbers and they are living normal life... So I could use some advise here. Thank you in advance!

At 81 I wouldn't do a think seems like when you aggravate itp it gets worse lol if that makes any sense I would get a CBC done every now and then but unfortunately my hemat took my spleen when I was about 50k all the time n now I'm lucky to have five good luck to you

81 is a great count. No way I'd treat at that level.

I'd strongly suggest that you see another doctor because nobody would treat at a count of 81. Here's the latest international guidelines.

bloodjournal.hematologylibrary.org/content/115/2/168.full

If you are feeling fine and no visible symptoms, I would just monitor your counts. Have them checked every few months or so. My counts were monitored in that range. Treatment started for me when I dropped to 30k, Prednisone was the first, two transfussions, more Pred, which only worked as long as I was on it. Rituxin is currently the treatment that is working for me. I was diagnosed at age 36. From my experience and reading other stories, Prednisone is not a long term treatment for ITP. It seems to only sustain counts as long as one is on higher doses and the side effects Suck!!!

Good job for researching rather than just blindly going along with the doctor. Keep reading! Its a rare disease and many doctors don't know much about it. I would never treat at 81K, thats a perfectly fine count. You might want to find someone who has experience and knows when and when not to treat.

My hemotologist is fine if I'm over 20K, 30K is better but I'm fine at a lower count. I've seen 3 hemos in the San Francisco area and they all agree that there is no need to treat until counts drop below 30K unless there is active bleeding. One thing I've learned about ITP is to look at the symptoms, not the numbers. Prednisone is usually a temporary fix at best and has some nasty side effects. You don't wanna go down that road!

Well said Posey!!

I agree with all. I would not treat at 81. I would monitor counts every 3 months or so and go sooner if there was an increase in symptoms (bruising, bleeding). Yes, Prednisone has a lot of nasty side effects that I would not want unless I had to put up with them.

Some people just have lower than normal counts that bounce round for long periods of time. If you can get by with no treatment, that's great!

Count me in - agree with all above.
Initial treatment on Prednisone 8 years ago was ghastly! - been < > 30 since. Currently no treatment & am about to fly around the world
mj

Thank you for the advise everyone. I am definitely going to change my Haematologist and get a second opinion... How do I know which Haematologist has lot of experience with ITP? Can anyone recommend a doctor in the SF bay area?

i have two thoughts in mind. first a somewhat humorous one.
i didnt even treat at 2. no kidding. i have lived at around 9 and 10 since 2001 when i was diagnosed. i always refused any treatment. after a routine blood test a couple of years ago by a new pcp i got a frantic call from him saying my count was 2 and i needed to go to the emergency room. i told him its not 2 and that the blood test i had with a technician walking around with his samples aging for a few hours messed up the test. so the next month i brought my count form my hema that does a count right after the draw and it was 9.

anyhow, im still alive with counts in single digits for over ten years, however, i went thru some of my old medical records and in 1996 my count was 88, so in a few years maybe you might be lower. but for now i wouldnt do anything.

Mrane,

I am from the north San Francisco area and have seen two excellent hematologists. They are both experienced, easy to talk to, and keep up-to-date with the latest ITP treatments. They are both in Santa Rosa, don't know if thats convenient. I have emailed their names to you. So you can check your pdsa messages to get that info. If Santa Rosa isn't convenient you might call these doctors to see if they know someone in your area.

good luck! - p

Thank you everyone on this forum. Here is an update on my situation. I did not go back to the doctor. I did not take any medication and decided to simply monitor as suggested. In 2013 my numbers went to 110 and again this year I am at 110. Still quite active with no health issues. Well I had a herniated disc recently, and the doctor is suggesting surgery but that topic is for a different forum :laugh:

Sounds like you made the right decision then! I'm glad all is going well.

Thanks for coming back with an update. It's good to hear the end of people's stories and good news is always welcome.

Great news. I think it's important for people to realize that ITP generally has a benign course. Naturally there are exceptions, and at times one has to pay attention to counts that otherwise would be ignored. Keep the platelets up and drop by to share more good news.