Are you always hospitalized

if your counts are zero, you have small blood blisters in your mouth, and mucho rash? I am just wondering.
Getting ready to go to the Christmas markets Nov. 27. Counts are holding good. I have fluctuated between 300,000 and 360,000 since May, 2 weeks after all this ITP stuff began. I have 2 more blood draws before I go. We will be gone 3 weeks. I surely hope there are no issues. I would hate to be stuck over there, unable to get home for Christmas. My hema is giving me emergency prednisone to take, but it did not help for 10 days last time, so..
Still having a problem with one Achilles tendon. Also having nerve issues, but I probably can't blame them on the steroids.
I hope all of you have an enjoyable holiday season without ITP rearing its ugly head, at least enough to screw plans up.

Roberta,

Those things are not always an indicator of a zero count. You next count will show you where you are. Just don't worry girl! Go and enjoy!

Jeffrey

Hi Roberta,

I think it depends from person to person. While one person may have blood blisters and petechiae all over when their count is really low, another person might now. Personally, for me, when my count was less than 10, I did have hematomas in my mouth as well as the petechial rash all over my body.

-Kristina

I don't have them now. I had them when I went into the hospital last time. I was just wondering if you always have to be hospitalized in that case.

I've never been hospitalised and have had counts of 1 and 2 with blood blisters and everything else many times. We just decide a treatment and off I go back to work.

This last June/July when I was admitted it was because the doctor didn't know ITP and was afraid.

Years ago when i'd be in the single digits or even to zero (manual count) cause machines actually stop at 5 or so (you become unreadable). I was only ever an out patient. One time I had a family function to go to the next day. I was having stomach pain and freezing. Doctor asked why I was cold I said always happens when my counts are low. Took my count it was 2 he pipes up that explains the blood in your urine your bleeding inside. Started an IV port gave me treatment sent me home and I went back the next morning. IV removed and off to my family get together!


I believe hospitalization should depend on the case and what is going on. Personally I feel too many people are auto hospitalized and treated. I think it needs to be a case of looking at the entire picture. "numbers, symptoms, your level of comfort, what is going on in life at the moment.

Wow, Winnifred. That's all I can say, "Wow." You're a gutsy broad.

I was at 5k 6 weeks ago with a nasty bruise and a few hematomas in my mouth. I was an out patient for a Platelet transfusion. Being hospitalized seems to depend on the Dr and symptoms.

I don't understand why they give platelets. I got bags and bags of them, and they'd always be gone by morning.

RHofm50129 wrote: I don't understand why they give platelets. I got bags and bags of them, and they'd always be gone by morning.

It depends on the person.
My first transfusion before Rituxan only lasted a few days. This time the Platelets that were ordered for me were given to someone else, that apparently needed them more than I did. I had to wait for another batch. I think there was some devine intervention with this transfusion. A transfusion is like any other treatment, we all respond differently. Even if a person has success with a treatment, there is always the chance that the treatment will not work as well or stop working. I am just glad I did not have to choose a drug for treatment. Will my counts continue to rise or stay were they are currently at, which was 109k a week ago. No idea. That is the game we play with this disorder.

According to the ITP experts, platelet transfusions should only be used in cases of uncontrollable life-threatening bleeding. Odd that up until recently nobody here ever had a transfusion, now it seems that they're quite common. I wonder why that is.

My last haematologist wanted me hospitalised with any count less than 10. Which seemed stupid as I had no symptoms other than petechiae (granted a lot of them, but no other symptoms) and all I did was sit around the hospital, taking up a bed on the cancer ward that somebody else probably needed a lot more than me!

Now I refuse to be hospitalised. I can sit around on my bum with my feet up just as well at home thank you very much. I would only go into hospital if I was worried about active bleeding - I'm getting ready to have this argument later today as I have lots of petechiae today and one from just taking off my plaster after my blood test.

I agree with Winifred, it depends on the person, symptoms, own anxiety levels etc. Plus, you are an adult, whilst you are conscious you can consent (or not!!) to be hospitalised - just be sensible and make sure you are happy with your decision and where your newest emergency departments are. Oh, and I always carry my ITP information in my handbag, just in case.

Ann - I had some platelet transfusions in the early days. Looking back it was because my haematologist (who was a lovely man!) was just not a specialist in ITP and wasn't sure how else to get me out of hospital when steroids and Ivig were failing and I was crying all over him because I wanted to go home

I've never been hospitalized or received platelets even when I had single digit counts and was bleeding from everywhere. I didn't go to work though.

My hema doesn't book himself into the hospital with his own ITP. Of course, he has so many patients to look after and also there might be people who would sue if things went bad. I think I would stay home rather than run around and hope it was over in 12 days like last time.

I have been told that a Platelet transfusion is the quickest treatment to raise counts when they are really low, as mine were at 5k. You do not have to be activly bleeding to justify a Platelet transfusion. As with any treatment for this disorder, there is no guarantee it is going to work everytime.

I have never had a platelet transfusion, even at 1k.
I have only 'allowed myself' to be hospitalized one time (4k)...11 years ago at the beginning of all this. But I know a lot more now than I did then. I'd have to be bleeding profusely out of my eyeballs to get talked into hospitalization again. My hematologist and I know what to expect, what to do with it, and what not to do. When counts drop into single-digits (they do quite often), the rescue treatment I take at home is exactly what they gave me in the hospital. I still go to work usually.

It is ITP.........annoying as hell, but life continues.

I've always been under the impression that a platelet transfusion isn't really considered to be a treatment; it's used to stabilize a patient who is bleeding. In theory, it is not supposed to raise counts for any length of time. Most patients will not get a response from a platelet transfusion and if they do, something odd is going on. The only reason that I can think of why it would work is that production is the main problem, not destruction. But since the average platelet only lives for 7 days, any transfused platelets should be gone before a week is up.

As for being hospitalized, no. I was working under 5k.