How low is too low

So I'm new to this and I'm waiting to hear back from my hematologist about where I go from here. (He needs to consult with my psych Dr about whether Prednisone is a good choice since I have Bipolar II)

I've been doing some reading, and it would appear that some people choose not to elect any treatment until they reach a certain count. However, I wanted to hear from you guys!

This is my recent blood platelet counts:
February - 79k
March - 47k
April 9th - 39k
April 27th- 40k-50k (they tested two vials of blood)

If you were me, would you elect to watch your counts but take no treatment at this time? I have very very minimal bruising and no bleeding. Prednisone seems to be very scary, and I wonder if the side effects are worth it.

Thanks in advance for any advice

Personally I don't usually treat unless I'm under a count of 10. And then I aim to get a count of 30 or so. But it has to be a personal decision and you and your doctor need to be comfortable with whatever you do.

Having said that there aren't many doctors who would treat at 50 so it might be worth waiting to see what happens next.

the short (and not very helpful) answer is that it depends. If you truely aren't a bleeder and have minimal bruising then it's a call you need to make to see if it makes sense to you personally to treat. A lot of people on here take the 'treat symptoms, not counts' route and only treat when their symptoms warrent it.
The only drawback to the symptoms route is that you of course are at more of a risk should you get into an accident etc. Some surgons will not operate on you if your counts are below 100K, some say 50K.

PS I'm on the 'stay away from the prednisone at all costs' bandwagon.

With a count between 10k-30k do you worry about accidents? My Dr. tried to explain that even if I don't see any bruises or bleeding on the outside, I could still get hurt on the inside; that I would be more susceptible to organ bruising and bleeding. She said that say for example, I was in a car accident- that perhaps I could suffer more trauma than someone with a normal count. (Which of course I interpreted as "you could die, when someone might have survived.

Is this something that worries you?

I replied at the same time as you barrelgal. I didn't know that information about surgeons not operating! That's definatly something to consider. Though, wouldn't they just need extra blood on hand to transfuse if necessary? Interesting...

You just have to get very informed about yourself and the risks then make a personal decision. The Dr isn't the one who will have to live with the side effects of the treatment, you are. Prednisone has a lot of side effects. I had weight gain, especially in the face area (moon face), insomnia, and really rapid mood swings. To me living like that every day wasn't worth the small risk that something could happen. That may be a very short term outlook on things, but I really didn't like the person I was on prednisone and the more and more I read about it I didn't like the long term side effects. I went to get a second opinion and the hema that I saw said "I would NEVER put a woman in her 20's (I'm 26) on Prednisone as a long term treatment"

Lorna:

As everyone said, the decision on when to treat is personal based on your comfort level. I was like Ann - didn't treat until I got to around 10 or 15. That was usually when symptoms got pretty bad. The standard recommendation for treatment is usually 20 to 30.

As for accidents, I didn't give that much thought. To me, the risk of side effects from treatments was greater than the risk of an accident. People without ITP can bleed to death from an accident. As for spontaneous internal bleeding, it is rare with counts under 5, so I wouldn't worry about that with your counts, especially with no symptoms.

I also would not treat- I made that decision when I was first dxed. I read a lot about it all and decided that for me, I would rather live a happy life than one bombarded with medical stuff that was not absolutely needed.

That is just my decision.

I decided even against the BMB. As long as tests show results that are "probably" not going to bleed on me, then my family and I are OK with that.

Of course, I would love to never worry about this ever again.........

Well it's been a few weeks since my last Platelet count. On April 27th, they tested two vials. One was 40k and the other 50k.

Today I went back (no treatment in the meantime) and the count was 66k! (My lowest recorded count was 39k)

So I got really giddy and happy when the dr told me... but she had this very serious look on her face and said "Well... yes ... but it's still well below what we want it to be, so come back next week for another test".

Am I reading too much into her reaction, or is there a reason I shouldn't be happy about my increased count? Is it normal to ping pong between high and low or something?

You should be happy and cautiously optimistic. If your count is good next time you might want to suggest not going back for a bit longer. Weekly tests come round all too quickly.

lornahalbert wrote:

With a count between 10k-30k do you worry about accidents? My Dr. tried to explain that even if I don't see any bruises or bleeding on the outside, I could still get hurt on the inside; that I would be more susceptible to organ bruising and bleeding. She said that say for example, I was in a car accident- that perhaps I could suffer more trauma than someone with a normal count. (Which of course I interpreted as "you could die, when someone might have survived.

Is this something that worries you?

They did a splenectomy on me with a count of 4. Not something I'd want to do if I had a choice, but if your doc knows about your low counts, they can do a lot.

Your counts look pretty good, actually. Everyone is different, but, for me, if I have a count above 20, I forget about ITP and go sky diving or mountain climbing or something.