low platelets

Thanks everyone for your input on insurance companies! I'd really like to know how others are doing with platelets in the teens and twenties.

Hi Kristine!

I am usually in the 20's but sometimes up to the 40's, not often anymore, but occasionally. I feel good and I do what ever I want! No disorder, disease, or ailment is going to keep me from my life!

I just enjoy "me" entirely too much!

If you feel good, DANCE!

Jeffrey

Same as Jeffrey. I had a gamma transfusion a couple of weeks ago for teeth extraction but that was to bring my plts to a safe level for the work. Christine

I'm going to get my platelets checked tomorrow. My last 3 counts were 31, 20 and 26. 31 was fine but I didn't like 20 at all. It's hard to get used to being that low. Today I had a tiny cut on my finger and it didn't want to stop bleeding. But, I'm at work and doing what I need to do. I skipped getting tested last week. It was easier to not know.

I'd really like to know how others are doing with platelets in the teens and twenties.

I'm doing just fine in the 11k-21k range. Thanks for asking.


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Well for the past month and an half I've been below 10k for the most part, 19k and 15k once each. Today 4k which is better than yesterday at 3k. Getting cbc and platelets daily if under 10k, waiting on treatments to kick (Rituxan and Vincristine). From my counting looks like 11/13/13 the first Rituxan should have kicked in by then???

Amber - it looks like you haven't had relief in a while. What haven't they tried on you????

Kristine

azathioprine (ex. Imuran), cyclosporine (Sandimmune), mycophenolate mofetil (ex. CellCept)

cyclophosphamide (ex. Cytoxan)

Anti-D (also known as Rho(D) immune globulin intravenous or anti-D IGIV)

(this one I don't want to try, male sex hormone (danazol)

IVIG - works great for me It only lasts a month, but I get "normal" counts for a couple weeks. It's great to know I can use it if I ever need surgery...

I've had IVIG and it only last days, I haven't had WinRho

Be very careful with ivig treatments. I'm only saying this because ivig scares the hell out of me. It was the reason I spent 3 months in icu. There have only been 3 reported cases of this reaction (I was the 3rd) but it still happened. I developed hemolytic anemia and meningitis. My kidneys, liver, and heart failed.

I just started back into the roller coaster of ITP back years ago when my counts stayed down regularily I did ok. lived in the single digits for a while yes covered in bruises and had spots but I never treated till my gums started bleeding and wouldn't stop.

This time around I needed to treat at a higher count due to bleeding. That and I think because I work full time and had no energy. Honestly it doesn't matter what others do or how they live with low counts.


I would like to ask you a few questions:
How long have you had ITP?
What type of symptoms do you have at low number?
Why don't you like living with lower counts? Is it do to symptoms or fear?
What do you do for a living?
How do lower counts/ITP affect your life (outside of doctors and treatments)?

Put those questions together and answer them only you can decide what is right for you.

Well, I got my results yesterday and met with my hematologist. My count was 15.

Winnifred,

1. I've had ITP since 2007
2. I have blood blisters in my mouth and some bruising at low counts. Also, feel pretty run-down.
3. I don't like having low counts because of symptoms which bring on fear.
4. I am an office manager/bookkeeper for a Boys & Girls Club.
5. Lower counts affect me in that I don't feel comfortable riding my bike or 4 wheeler with the family. I don't feel comfortable in crowds. I don't even want to play in the ocean. I'm concerned about getting sick or falling.

My hematologist says the blood blisters in the mouth and a count of 15 are a reason to treat. He told me he consulted with someone at the University of Michigan who said I should get my spleen out. I don't think I'm ready for that. I'm going to get Rituxan next week.

See now that is more of a bigger picture. 4 wheeling is fun but you can fall off so you need to have a good count if your going 4 wheeling. The job doesn't sound like you need high numbers of platelets.

Did you used to play in the ocean? if so than you need to get back to that! I used to live by an Ocean only for a short while but was fun going and watching the tide come in and out!


It is putting this whole picture together that can help you decide what to do. I took what you said and put into two versions of how I decide whether to treat or not!

1. Blood blisters in your mouth, A count of 15, Feeling run down, Work (can I function), Not being able to enjoy your life. Sounds like good reasons to treat.

2. No blood blisters, Count of 15, feeling pretty good, Work (can I function), Enjoying life. Sounds like a good reasons not to treat.


I hope Rituxan gives you the same great remission I had. Years of worry free!

Kristine,

I am having blood blisters in my mouth and blood in my mouth in the mornings. I am bruising, and I have headaches that come and go. Yesterday the tips of my fingers started turning blue but it did not last long. I have a facial rash that is something like a lupus "butterfly". I am probably older than you, but I am fit and I love to be active. I am still doing what I want within reason. I have given up the extreme obstacle course races but I am still trying to other things. I am probably very close to needing to treat. But until I have the petichiea I am not going to treat. To be very honest with you and everyone else. I don't want to know! I am happy in my ignorance!

You do what YOU need to do for you! I will support you forever!

Hang tough! Stay in touch!

Jeffrey

Jeffrey you do know really don't you that petechiae are neither here nor there. Blood blisters in the mouth at whatever count is a reason to treat. The mouth is a window to the insides and blisters there mean possible blisters and bleeding inside too.

Ann,

Yeah I know! I feel pretty good today and the blood in the mouth was not as bad and I think the blisters are gone.


Ann, thanks.

Jeffrey

Jeffrey71, I too like to be ignorant sometimes. I skipped a week of getting my blood checked 'cause I just didn't want to know.

Winnifred, I do love to play in the ocean but since I live in Maryland it's too cold right now. I went to the beach a few months ago with my daughter and was nervous because the waves were a bit rough. I went in anyway

I went to the hospital for Rituxan yesterday morning. I was pretreated with solumedral and benadry but we still had to stop twice because I was so itchy. I started to get shaky too so I was given adavan. I was only getting the low dose!

This morning I have a headache and feel stiff.

I had Rituxan May of 2008 and had platelets of 50-80 for 5 years. I'm hoping for that again.

>>>"The mouth is a window to the insides"

Hmmmm....this brings up some questions;

If the mouth is a window to the insides....
And the eyes are a window to the soul......
What the heck are my nose and my ears the windows to? ....... :dry:


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Nose is the widow to the brain and the ears well who knows!

weirdjack wrote:

>>>"The mouth is a window to the insides"

Hmmmm....this brings up some questions;

If the mouth is a window to the insides....
And the eyes are a window to the soul......
What the heck are my nose and my ears the windows to? ....... :dry:


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Jack!

That means you need to scoot either to your left or right! Quit hanging out of the window!
I am going to put up post in social section in a bit. You shall be named!

Jeffrey