New to ITP

I was diaganosed with ITP this past April after a physical. My counts was 121. My doc sent me to a hematologist and I was put through every test you could imagine. One week it was HIV, next week, Hep C. On and on until after a month or so, you have ITP. Ok, I guess I am greatful as I walk out the door. He tells me to come back on 6 months and retests. Well, after reading and researching and getting enough time to build a fear about this subject I decide to go back and tell my doc that I want to be tested a little more frequently then 6 months. I got the results back and now I am at 102. Now this put me right back on the path on panic. Will it continue to go down? What if it doesn't stop going down.

ITP has been on my mind for sometime now and it really worries me. I am about to turn 45 and I have a 6 year daughter. I want to be around for her for a while.

Thanks
Paul.

Are you saying your lowest count is 102 and you were at 121 when the doctor said you had ITP? I don't even think those counts would meet the clinical requirement for a diagnosis for ITP. And the risk of bleeding is generally considered to be at counts below (and sometimes well below) 50. If you have no other symptoms, and all your other tests are fine, then I don't see what you are worried about.

Read the information on this site and I think you will feel reassured.
Erica

Paul,I think you'll soon realize this site provides not just clinical ITP info and insight but excellent personal experiences. Erica is right on the mark, clinically ITP isn't considered "dangerous" until you're < 50,000 and "serious" until you're < 10,000. I know that probably won't help alleviate your fears (it didn't me in the beginning). The best remedy is KNOWLEDGE and this is the place to gain it. Read the topics here re ITP and treatments as a starting point but the MAJOR points are ITP is rarely fatal and each person will respond differently to a particular treatment. So just because it was successful or failed for me doesn't mean it will suceed/fail for you. Thus the anxiety many of us experienced in the beginning. There are no absolute answers regarding ITP - and that can be difficult to accept. You will over time likely accept the uncertainty of ITP

Feel free to post any questions and concerns to this site. The knowledge here is amazing and you're unlikely to absorb all you hear from you MD's. Between the anxiety, shock and info overload we're here to help you - someone here has probably been there and done that - in fact probably several of us.

I suggest you read the attached link found in one of the discussion groups.

It's very nerve racking when you're first diagnosed and the re-occurring trips to a hemotologists office to keep getting blood draws allows us to build up all kinds of scary things in our minds.

First of all, your beginning of the ITP journey if very normal. Most of us went in for some other visit and a random blood test showed the low platelets. ITP is typically a diagnosis of exclusion rather than immediate, so they start with a basic set of blood tests and when it comes back as normal or inconclusive they order up another set. When they've ruled out the other conditions that also cause thrombocytopenia like luekemia, HIV, Hep C, etc, then they make the ITP diagnosis.

For now you're slightly below normal (140 to 340), but unless you have lots of bruising, lots of red dots under the skin (petichae)or nose bleeds that you can't stop in under 10 minutes it's not likely you have be overly concerned. Most of us had mild panic if we had these types of things until we had a few rounds of blood tests and hemo visits under our belts. Steve (Gort) had some excellent advice that was sticky noted on the Newly diagnosed forum: www.pdsa.org/discussion-groups/5-newly-diagnosed-a-frequently-asked-questions/8344-excellent-advice.html

While the drop from 120 to 102 was scary to you, the old timers here are all wishing we could be that high. As Erica says they can do emergency surgery at 50, and most don't treat until we're under 20 or 30. It's not uncommon for platelets in "normal" people to flucuate 30K in a single day, so you may go in next visit and be up.

At counts above 50K, most of us only see our hemo's every 6 months. I went that route for 15 years before I had to start treating. We do call and get a blood test if we notice symptoms like I mentioned above. Definitely have the discussion with your hemotologist about your concerns and see if you can arrange to have a blood draw if you feel you have symptoms. And it's okay to freak a bit, my funniest one was when I put a new set of sheets on the bed without washing them and had a rash from the sizing. Even though I suspected that was the cause, I didn't feel comfortable until I got the CBC results. You'll have stories too and can come here and we'll understand and all have a good laugh or cry together.

At this point, it's a good thing to start building a relationship with a hemo so that if you do get under 50 you've discussed treatment options, your life situation and the impacts of the various options. Then if you have to treat, you're not making decisions from a more stressful place or being rushed. You do have to remember that most hemotologists are also oncologists who see cancer patients with far more critical issues every day. They seem very laid back when they say oh, just come back in 6 months when it's consuming our thoughts, but to them it's minor and treatable. If you're not comfortable with your doctor, then fire him and get another, it's okay. Many of us have been through a few until we found one whose style and office worked for us.

Our best advice, don't let ITP consume your thougts. Become knowledgable, but don't obsess with the web searches, only take Web advise from reputable sites (medical schools, etc) and enjoy life and your daughter, she'll only be this age once.

Paul:

If it continues to go down, you will monitor it. If it keeps going down, you will treat it. Most people respond to treatments, so the risk of dying is very, very slim.

You are lucky that you were caught at high numbers. Most of the people here were diagnosed when they were already pretty low. When that happens, they are slammed into treating and everything happens very quickly. That is scary. You can take this time to read and learn.

Your counts can also go up. Some people just have a low normal and stay that way. You can live a normal life like that - you have very safe counts. Counts will vary due to normal fluctuation. You'll be fine.

Thank you all for the comments. For me to hear the comments from you guys does help. My Hemo is also an Oncologist and you are right, to him it is probably just something that is going to occupy some of his time. My pcp kind joked at his lack of responce as well.

Reflecting back to last winter, I am wondering if this is when it actually started. I had a series of bloody knoses that were an issue. One took me almost 40 minutes to stop one. I was just about to get in the car and head to the hospital when it finally stopped. Funny how that Dr did not think to give me a blood test at the time.



Atleast I have learned the next time not to wait so long.

Thanks
Paul.

If he put you through "every test you can imagine", he's being much more thorough than most. An ITP diagnosis doesn't require a lot of testing.

Can I just say....aaargh! Why do doctors feel the need to scare someone whose counts are slightly below the normal range? I think it was about a year or two ago that ITP experts revised their definition of ITP to be "below 100K".

Paul, there is a big difference between normal and safe. About 98% of people have platelet counts between 100K-450K, so that is "normal". But....most ITP experts will agree that people are very safe with counts well below "normal".

So....please don't worry too much about a count of 102. The platelet counts are only accurate to within about 5K. If your next count is 97K....that's really the same as 102K, so that wouldn't be a cause for concern. As others have said, if your count happens to drop to 50K, it's time to start paying attention and monitoring more closely.

(FYI, I've been as low as 3K. Last count was 98K, and I am considering that just fine).

Hi Paul
The first thing to know about ITP is EVERYTHING is different for everyone. From symptoms to treatments and even reactions. I don't think anyone is trying to minimize your diagnosis, or your reaction to it. It's just that some of us have been way, way lower in counts than you and what you talk about seems like a dream come true! So, you are going in for more frequent counts? Please let us know how it goes.

Hi Paul,

I have ITP and also developed chronic hives. You may get one too. I've gone through many tests & medications but only this time something worked. The lowest I've gone down was 30,000 & remained at 70,000.

I was on Prednisone, zyrtec, singulair, etc. for many months. Of course! I ended up getting more than just the hives. I gained weight, moon face, bone loss, irritability, anger, etc. I was crying in front of the doctor. They couldn't figure out why I develop hives. The docs thought I am allergic to something I ate.

I finally found a new doctor & prescribed Doxepin & Zolof with the Prednisone. It started to work. We have finally tapered down the Prednisone till I am totally off it. We continued the Doxepin & Zolof for a couple of months then started tapering down the Doxepin. For over 2 weeks now, I no longer take Doxepin. I'm still on Zolof but at very low mg. now. I only have around 5 hives a day & getting smaller each day. My platelets last Friday went up to 156,000 from 70,000.

You see, don't give up. I got through it.. you will too.

Maybe my treatment might help others. I was lucky to find one near my home.

Eve:

My husband has just developed chronic hives - about 6 weeks ago. They can't figure out the cause of his either. He's been on Prednisone, Decadron, Hydroxyz and now they are giving him a sulfa antibiotic. Nothing is working. I've read about Doxepin (I've taken it myself) and that may be a next step. I'm glad it's working for you.

He gets hives that look like boils, some that are welts about 8 inches around, and some that look like blisters.