New Diagnosis of ITP

Ok, my head has been spinning with this surprise diagnosis if ITP. I need to know what perninet
questions I need to be asking my hematologist.

I went in for a annual check up on the 27th of March and my platlets were below 22 so I was sent asap to a hematologist. Of course this kinda freaked me out a bit. I was started on 60 mg of perdisone that same day and in 2 days my counts were back up. I was weaned off the predisone and had more labs this past Friday and my platlets were down to 33, so I'm now on 40 mg of predisone. Man thats some nasty med. Oh, and Wed. I had a terrible migrane and the next day I notice a vessel in my eye had ruptured and it happend again yesterday. My doctor didn't seem that concerned about my eye, but it scares me. Should I be concerned?

If someone can offer me questions that I can ask it would be helpful. Oh, and do I need get some medical alert identification? what about having a colonoscopy? What percautions need to be taken?

Thanks to anyone that can give me some advise.

I guess you can tell I'm new to this site and have posted in the wrong place.

Thanks again for any advise I can get.

Welcome! I know your head is spinning, but in time things will become a lot calmer. Are you sure you were diagnosed the 27th of March? That is a lot to happen in three days! Prednisone is a common first treatment, but usually it is left in place much longer - weeks - before weaning off.

My wife has migraines, and when they become recurrent, one after the other, her neurologist gives her prednisone and it breaks the cycle every time. I guess your migraine attack was while weaning off the prednisone. Her migraines seem to get worse when her platelets are low.

The broken vessel in your eye is called a subconjunctival hemorrhage. It is not serious, and occurs in people without bleeding disorders, though I bet with the low platelets it was especially scary looking!

One thing should reassure you: people with ITP have fewer platelets, but their platelets are generally stickier than normal, and so you can get by with fewer. Platelets above 30k are adequate for daily living, even much lower for some people.

Surgical procedures are a different matter. I would postpone the colonoscopy until you get some decent platelet counts. It's not the colonoscopy itself that is a problem, but they will want to remove any polyps that they find, and those could bleed excessively. Discuss this with your hematologist. The endoscopy group may want a letter.

Medical alert is not a bad idea. There are also smart phone apps.

Keep coming back. There will be others offering their experience and support.

Don't worry: a common mistake. Sandi (our dear and wise forum administrator) will move you to the correct category!

Sorry...I was diagnosed on March 4th. I told you my head was spinning! LOL!

My headache did occur while I was weaning off and my hematologist did say he felt like I was probably weaned off the Prednisone too fast.


I appreciate your quick response and reassuring me that the rupure vessel is probably not something to worry about. Oh, and I have an identical twin sister who recently had 7 polyps removed while having a colonoscopy and therefore I starting thinking about what I needed to do because I need one as well and I might need to have polyps removed as well.

I'm starting to settle down a bit after much reading and trying to educate myself. For me, it helps to talk to people who have actually had the same or similar experience.

Thank you again.

You can still have procedures done with ITP, you just need to prepare ahead of time. Ask the doctor what he would like your count to be in order to do the procedure. If counts are up, you're fine. If not, you might need to treat first. There are ways to work around it and you will learn fast.

I don't want to create a larger problem if I can be proactive.

Thank you Sandi.