Counts below 10 - How critical?

You all have probably hit the nail on the head with why I am a bit scared of being in the car with low counts, when I first got ITP there was a young training doctor working with an more experienced doctor in the hospital and she was really cautious with what she would let me do, the older doctor was a bit more relaxed.
I don't know if all hospital have what we have in Australia but they call it a gate pass and the doctors give you a gate pass if you have been in hospital for any length of time and this allows you to go home for a few hours a day, well this young doctor took mine away as she thought car travel was too dangerous, I guess that way of thinking just stuck with me, I guess I need to get over it.

I think so much depends on how our doctors react. I have been lucky to have a hematologist who is relaxed, who told me from the first that I could live a normal life. When I have single-digit counts, he raises my prednisone to about 15 mg/day, and increases the frequency of my blood draws. He has never told me anything to alarm me. (I also have been lucky to respond to pred with few (so far) bad side effects.) When I was in the infusion clinic with one of my rituxin infusions, however, a nurse noted my low numbers and advised me against all kinds of things--including shaving my legs!

I had a nurse who nearly refused to do my Rituxan infusion because my counts were 3. She was afraid to put the IV in. I had to convince her that it was okay to go ahead....that's why I was there, right?

I also had a nurse who drew my blood and when the count was below 5, she wanted me to stay for a transfusion. I just told her no thanks, I'm going back to work.

Lots of stories, lots of different advice.

When I was diagnosed, the first person who I talked to that had low platelets counts,gave me dire warnings. (Of course he has been battling leukemia for a long time, and has had a lot of Chemo treatments.) Some his advice was to not play with knives and other sharp items, try to avoid things that could cause bruising, and not operate a lawnmower (well that justified my lawn service.)

The next person told me all about her father in law, who was on cumadin (not sure of the spelling), which sound like a really nasty heart medication. She was constantly patching him up from simply scratching himself from simple activities. She told me to keep a good supply of compresses and coban on hand. And that coban was cheaper at the tack store then at the pharmacy.

I did find that when my platelet count bottom out at 11, that I would scrape my arm (like on a door way without even noticing I did it,) and I would begin to ooze from the wound. But I think that was from my skin had thinned out and was dry from my negative reaction to Rituxin. That response, I have not read where any one else, with ITP had that same response. My response now is to stair at cuts and scrapes to make sure there is no unusual bleeding, even though n-plate keeps my counts above 80.

Just watch what you are doing, when your counts are low.

When my counts had bottomed out my dr. put me on Amacar (aminocaroic acid) which helps clotting (actually it inhibits clot breakdown).

I did a search at this site for both of its names and came up with zilch (only "Amacar" seach found it as a subset of "Obamacare")

So, I'm curious- has anyone heard of this ? Has anyone used it?

Mark

Mark - it's spelled Amicar....which is probably why the search didn't work.

I've heard of it, yes. When I asked my hemo if I could use it to get some dental work done, he said 'absolutely not'. I should have asked why, but didn't.

I've had the other one.. tranexamic acid. It's supposed to help with nose bleeds and mouth blisters but I don't know if it really worked as I don't always get them anyway.

This is very interesting to see how everyone's doctors say and do things differently. Guess we just have to make our own decisions based on how we are feeling at the time and I'm sure we have to take in financial situations as to traveling to and from work. If your able to go about doing normal activities then we need to go for it. But if our body tells us we are not able to go about normal activities, then we need to listen to our body as it knows best!

Mark, My hemat sent me home with a prescription of Amicar. Last week my nose was bleeding and he had me take it every 6 hours to help prevent the clots that formed from breaking down. I carry it with me everywhere I go as my platelets have not been above 10,000 since March 23rd. I do try to go about my normal life as much as possible, but I do not drive. I take 40 mg Prednisone/day and my dr feels it can make me to edgy to drive which would not be safe with my low platelet levels. I hope the Amicar helps you.

Tim, if 40mg of pred is not getting your platelets above 10k then it is probably time to taper off the pred! Especially when the side effects are serious enough to keep you from driving.
Also have you considered some second and third opinions? Your doctor has thrown a lot at you pretty quick.
Erica