new diagnosis

Hello recently diagnosed ITP. Have a few questions for those experienced in this area.Here's my brief summary pls let me know if this is a common expereince.

March yearly phys - low P count in the 50's
Feb - June blood dr visits begin numbers like: 50, 58, 52, 30 ....(many tests bone marrow, more blood work, spleen and liver tests- rule out other stuff)
went on steriods for 4 days - back up to 60

dr says need to come in every week will explore maybe chem?, intrav medicine, low dose or high dose steriods?? but moniter it for now......

BUT no real symnptoms other then numbers - I'm bouncing back and forth from no big deal to OMG serious stuff???

BTW I'm a healthy 37 yr. a tad overweight :

Well, ITP can be anything from no big deal to serious stuff, depending on the situation. As a rule, counts above 20 or 30 are considered safe and no treatment is recommended unless the patient has symptoms...bleeding (nose, mouth, eyes, GI, etc). If you can stay above that, there isn't really a need for serious treatments. You responded a bit to a few days of Prednisone; some people spend months on them but might have a better response (higher counts that last longer).

If counts don't respond to steroids, then you can get into the IV's and there are several treatments: IVIG (usually a temporary response), Win-Rho (can last a few weeks or months), or Rituxan (can cause remissions from a few months to a few years).

What dose of Prednisone were you on? For now, I wouldn't panic and consider this serious. You've never been in the single digits (and hopefully never will) and have not been bombarded with nasty treatments. This is not a quick fix disorder and it can linger. The best thing to do is live life as normally as you can and go with the flow.

thanks for the info - I was on 40mg a day for 4 days My hematologist was disapointed by my low reaction but at least I had a reaction -

another quick ? is itp rare or more common?
julie

Ha - the people who have never heard of it consider it rare. I don't consider it rare since my sister had it before me in 1982 and I've known of several people who have had it. Since I've been on this board (12 years, I think), I've seen so many people come and go that it doesn't seem rare at all to me.

Did you have your count done as soon as you finished Prednisone (or was it Dex)? I'm asking because counts can drop quickly after a short pulse like that. Some people end up lower than they were when they started.

it was dex and the blood workup was 'bout 6 days after - now im going weekly so next thurs is next, my husband seems to think its a common disease but i was under impression was kind of rare we are still disagreeing -

my dr seems to be pushing chemo as a "cure" a bit scary.

In my research seems that most of us do well even with low counts but dr treat aggressively, are there many cases of internal bleeding or is that a big maybe? in other words do people untreated really have crisis internally due to ITP or do we mostly compensate by having just a few super plate's instead of a ton of mediocre ones.

what are the real danger signs besides low counts, bruises , and spots? like uh-oh better call the dr. Don't worry im speaking to my dr weekly so I'm not looking for medical advice, I like getting ur responses as u live with it and know it intimately

thx so much feel better knowing somewhere to turn

First of all, there isn't a cure. What "chemo" is he talking about?

Yes, most do well with low counts, and yours haven't been critically low (yet). I normally didn't treat until I hit 10, some feel more comfortable at 20, and some at 30. It all depends on the individual and the doctor. Yes, some doctors are too aggressive.

The biggest fear is bleeding in the brain and that is very rare. People with ITP tend to have bigger, more effective platelets (like you said) and most do okay. Danger signs would be the same as for a stroke...thunder clap headache, vomiting, inability to speak or move limbs, sagging on one side of face, etc.

It's possible that you did have a better response to Dex, but a count 6 days later wouldn't have shown how high you did get. Some people are on the way back down by that point.

Everyone is different and you kind of have to get to know your ITP. For me, any count over 20 is considered "normal" and I put no restrictions on myself. I have climbed mountains (literally) with counts in the 20s and never thought twice about my ITP. Below 20, well that's a different story.

Don't take my level as what you should use. Everyone is different. I agree with what Sandi said.

thanks for all the info - this site has been my lifesaver, i ordered some pamphlets and gave them to my family as they don't stop with the Q's -i'm dubbing this the pain in the *** disorder cause it really leads to more ?'s then answers.

My count seems to have stabilized at 54 so I think I'm out of the woods for awhile and my hematologist gave me the greenlight to test bi-weekly.

Finally I'm meeting with a bio-nutritionist who is going to order a full blood work up then set me up with a special diet even if it doesn't help my itp I'll get stronger then i could stand the meds better i guess.

but i really wanted to thank you all

julie

Glad your counts are stabalising in a "safe" range Julie. I had a chemo Drug called Cyclophosphamide 1 gram per week for 4 weeks IV. Didn't do a thing for the platelets and is a pretty rough drug. So best to be informed and make educated treatment choices