Sayin' Hi and lookin for direction

Hey, I’m Breanna [18]. I’ve been cruising the forums, and I thought I’d finally introduce myself and my story to get some advice or conversation going .

For the ITP story: When I was in 5 th or 6 th grade, I was going to get a tonsil/adnoid –ectomy, so they took my blood, like they would do before any surgery I guess [I dunno]. My mom told me I was 11,000 then, so they put off my surgery till I improved. I never had to go through treatment, and I was in a steady remission for a while. I do believe my count dropped, but I was never aware of it being too bad. I followed what my mother told me, and she likes to be in denial, so we didn’t get CBCs for a very long time. I had breast reduction surgery in Nov ’09, and was clear then, but I don’t remember the number. I had family issues and I left for college 3 ½ hrs away from home [don’t get me wrong, I don’t mind it at all! Haha], so that could have very well contributed to coming out of remission. I came back from the pool in the athletic center and noticed a lot of petechiae, more than I would normally get on random occasions. I called my mother to fill her in, and we decided to chill, hopefully they’d swing themselves up like they do. Then, the day after, I was helping pull some wire chairs apart and pinched my arm between them. 6cm x 11cm bruise on my right arm that would drain towards my wrist was a result [see attached picture?]. A few more symptoms and I went to the ER. I bruised and swelled when they took the CBC, and was @ 17,000. They gave me a 40mg dose of Dexamethason/e and the next visit two days later yielded 53,000. Yay! So, I assumed it would move itself away, but I became more aware and joined PDSA anyhow. Yesterday, I go in and they draw. I came in to the hospital with sinusitis, so I guessed that my count was probably low. Yep, 16,000 and so my hematologist prescribed me 3 days of a once daily dose of 4mg Dexamethason/e. I was shocked at that number. I was a little frustrated, but it’s not like stressing over it will help me. I was taking precautions, so I didn’t trip it down [to my knowledge]. I even quit smoking, thinking that was the problem.
Now, the options stand like so: I go home for break, and for 4-6 weeks get a CBC weekly. If it doesn’t level itself out above whatever his choice number was [ I don’t recall], I start Prednisone. I hear that it SUCKS. So, I’m not very excited about that, but I’m going to hope and think positive that my count will jump. It’s hard not to focus on numbers, because every time you do something possibly dangerous [I ride horses, showing and hobby] you remind yourself of the risk. I don’t like to let it limit me, but I try to keep it within reason. I don’t drink anymore, and I try to avoid things that drop it, like any severe chronic ITP person would.
Short digression: I find it quite curious, for as common of a platelet disorder as ITP can be, not many people know of it!
I guess I’m looking for general advice, on your experiences or on things you’ve heard. Anything?

Thanks! Bre

Wow, that's quite a bruise! I'm new to this ITP game and am on watch and wait so haven't really got any advice. Would just like to say that you sound like you've got a terrific attitude - very positive. Keep it up and I'm sure those numbers will get up.
Cheers, Sally

Thanks I hope things go well for you!!
Breanna

Hi Breanna Pretty name. I work with a girl named Breanna. Sweet girl, I bet it goes with the name! Glad you decided to start posting. Alls kinds of help here. If you looking for advice about prednisone, I'm thinking I'm not the one to give it! For me, it was a waste of time. The only thing I liked about it was the short sleeping. I only slept for about 4 or 5 hours a night with a nap in the middle of the day. It did nothing at all for my counts and the taper was more than I want to live through again! For some people it does the job though. Looking forward to seeing you around.

Hi Breanna,
You asked about general advice - here's a couple of things. One, you might want to get a medical alert bracelet that says 'low platelets' in case you are in a car accident or get injured. Two, you might want to carry around a note from your doctor explaining that your bruising is a result of your platelet disorder. Especially as a young woman I can see you might run into situations where people might think someone is hurting you. I remember one young woman who told how her boyfriend had his hand on her shoulder at a concert and she ended up with a hand shaped bruise there and her father had a fit until he realized it was the ITP.

I didn't do so bad on prednisone, like Gretchen said, it was nice to need less sleep. But it can be really hard to get off pred if you are on it for a while. Also I did get some fatty parts around my middle that won't ever go away - my skinny pants have gone to the thrift store. But it takes a while to get that side effect.

Good luck!
Erica

Glad to see the med id advice, i just ordered a bracelet a couple days ago. I put "Sever Chronic ITP" as my hematologist suggested, but i did add something about platelets to the back.
Yes, the lovely weight distribution change i see on the side effect list... i guess in all reality, I'd rather gain a little weight than bruise like mad .
I've heard the term "taper" but i'm not sure what it means...

When your on steriods you can't just stop taking them. Your body would freak out and do some pretty bad things to itself! You have to slowly taper off them. I did mine kinda quick I guess. I dropped 20 mg's every 3 days so it only took me 18 days to get off 100mg a day! Some out there taper a whole lot slower, like only dropping 5 mg every couple of weeks! I guess my doc did it so quick since it wasn't doing anything for my anyway.

It all depends on how long you're on them and how high the dose is. A person can go into adrenal shock which can be fatal if you stop steroids suddenly. That is rare. Tapering too fast usually just makes you feel really bad for a while.