Counts below 10 - How critical?

Hello all, i am curious, i was diagnosed in 1999, and was in remission for 12 years. i actually thought my itp was a thing of the past... well, caught a flu, and an enormous amount of stress, and hello petechia, bleeding gums, unexplained bruising... etc.
I went to hospital, with a count of 4. 5 days of ivig, got me up to 71, went back to work for 4 days, count back down to 8, 2 days of ivig, (dont know what count is) and already they are talking splenectomy again.
Does anyone here function with counts consistently below 10 (which is what they tell me is the critical level)?
I figure splenectomies only work some of the time, for some people. mine has been fine for 12 years, and think its ridiculous to take out a perfectly good organ, just because it is the next action in the "procedure"
Prednisone didnt work for me last time (and again "they" tell me "just because it didnt work last time doesnt mean it wont work this time", but last time it made me into a very evil person, and my drug induced rage almost got me fired.
I started taking Danazol about the same time i started going to an awesome naturopath, and something put me into remission, i would like to find a natural solution, but cant get a straight answer about low counts.
Any ideas???
Thanks.

Hi there,

If you're looking for natural treatments, homeopathy is very effective and has worked for a number of people here (and some still in treatment). you can read quite a bit about it on the natural forum.


patti

Glad to hear you had Remission for 12yrs!!! 10k is a Critical level. I was told to STAY Home at that level. Agree with you on the Spleenectomy! There is just not enough of a guarantee with a Spleenectomy. Once it is out there is no putting it back if it does not work. Prednisone and 2 Rituxan treatments for me, so not much help with natural methods.

Enormous Stress!! I really think that is what triggered my ITP 7 years ago!!

And here's the other view.. for most of us below 10 is not critical. I just go to work and so on with under 10. My haematologist doesn't like me to stay under 10 but it's not an emergency situation. I used to take a low dose of prednisolone, say 15mg to get my count up but now on Nplate I just adjust the dose for the following week. It takes 4 or 5 days to work so the low count lasts just a few days now, but I have lived with low counts for longer in the past.

At 8k I was told to do as little as possible. No power tools, no driving, limit stair use. Pretty much stay put. Internal bleeding was the biggest concern. I was strongly advised Not to work with counts that low. Yes, many have counts that low quite often and go about their day, but from a medical perspective it is a "Critcal" count.

What is homeotherapy your talking about?

Dean:

I was also told to go to work and just do my normal thing with counts of 3. Different doctors tell patients different things.

At 8k my doctor told me not to fall down and not to hit my head but otherwise to go about my day. It wasn't really helpful advice but I'm glad she didn't tell me she wanted me in the hospital. I wasn't showing any symptoms of bleeding, just bruising and when I brushed my teeth.
Erica

My Hema doesn't like me to do anything under 10, but usually when I'm under 10 I'm at 2K or less, I tend to fall fast when I fall.

Dean:

My counts have been down between 5k-8k and my doctor has told me to go about my day. Just try not put your self in a bad situation.
Chase

Yeah - don't go to any banks in case they get robbed, don't walk close to tall buildings in case something falls out the window, and never walk on railroad tracks.

My doctor also told me not to get in any car accidents....be careful while driving he said! Okay, I can be careful but what about the other guy? I thought that advice was weird.

Holy goodnight, don't go into any banks. Well I guess that's a good reason for me to retire, I am a banker, so what do I do now? lol

I was 17 when I was diagnosed, so my hematologist limited a lot of my activity at that time. Now when my counts drop he doesn't like me to ride in a car until I am on prednisone for at least a few days. There have actually been times (as an adult) where I have had blood work done and left the office only to receive a call from my mother in a state of panic. In one instance, she told me that my hematologist's office had been trying to track me down because my count was at 2k and I needed to pull my car over immediately! I get small cuts and painful bruises on my hands when my count is below 10k, so I try to limit my activities.

Some may be able to do normal day to day things with counts under 10k, others have to be a little more cautious.

Dean, I agree and I think the big thing here is that you have to do what you are comfortable with, some are comfortable with the counts under 10 and some are not. I am not because I never ever want to be in hospital again with major bleeding, worst week of my life. I think the thing is you decide what is right for you.

And sometimes you don't really have a choice. If I took time off work every time my count was low I'd have lost my job in the early days so I just got used to plodding on.

Milly, I agree. I am definatly not comfortable with counts under 10k. I will pretty much park myself and veg with critical counts, 10k>. I have never been Hospitalized even at 2k nor have I ever had any bleeding symptoms. I consider counts of 10-100k to be low and anything below 10k to be Critical.

Surely the answer to this is, as many have suggested, "it depends". It depends on things like
- what your symptoms are,
- whether you have a rescue treatment that works for you,
- whether the low is temporary and you know its going to bounce back or its longer term,
- what you want to do activity or workwise
- whether you can "afford" the time out
- the level of risk you are happy with
- etc.

Personally, having considered the answer for the above variables for my son, I'd have to say its not critical for him......and if Dougie had stayed at home on the sofa everytime his count was under 10, he'd have missed a lot of life by now. But thats him, other people will have different answers and different responses - all seem equally valid

Ali

I do think there's a bit more to it than that though. I think the doctors have a responsibility not to scare patients out of their wits by telling them that they need to sit still and do nothing with low counts. Living with that fear would be intolerable.

I agree with you there Ann.

I sometimes read the Facebook version of this group and the thing that strikes me most is that most people are very scared of low counts. They feed each others fear too, with the result that the fear must be worse than the original condition. Particularly for children, this seems to mean that they get very harsh treatments that are possibly worse than ITP itself in terms of risk and impact.

What I was trying to say (clearly badly) is that if you sit down and rationally consider all the variables, then you would come up with a sensible decision on an individual basis. I guess the problem is that people don't always sit down and rationally consider the variables........

I too have read the facebook page, not often but just have a look now and again. I find it to be be over dramatic and yes, scarey.

I don't think you said it badly Ali, it is an individual decision that we all need to make for ourselves and don't get me wrong, I would not just sit on the couch and do nothing even with counts under 10, but I would be a little more careful with what I would do and I don't look at as being critical and I would certainly be looking for some sort of treatment for myself. I don't know if I would be the same if it was my son or daughter as the drugs are harsh and these kids bodies are still growing, it's that thing of risk/benefit, different for adults then children.
I just think we all have different comfort levels and I support and respect each persons thoughts on what personal comfort levels are.

This is an interesting issue and discussion. I personally try to never let my counts go below 10K even though I haven't had problems with bleeding. Prednisone works for me pretty quick so thats my stand by. Not everyone has that. When my counts are below 20K I stay off the freeways, thats my policy, just makes me feel safer.

Another thing I'm still trying to understand is that when I was at 6K, I was faint when standing up. Had to lay down or I would have fainted. Hemo said that was unrelated to ITP, no way could low platelets cause fainting. Now there is more talk about ITP possibly affecting the autonomic nervous system (I think? I may be wrong). Anyway its another reason for me to take it easy if counts go below 10K.

I agree also that the can force harsher treatments. My first hemo had the idea that I should have counts at 50K or above so had me on high doses of Prednisone. I didn't know much then, but if I had it to do over I would have never stayed at 40 and 60mg for so long. My health and quality of life was rapidly deteriorating from the treatment, so I found another doctor who helped me taper. The new hemo was good with 30K.

I think everyone is scared and overreacts at first as with any health condition, until we familiarize ourselves with the problem, especially parents with childern. Yes, we all react differently and have various comfort levels.

So true Dean, I think once you decide what is right for your situation/lifestyle, that is when you get get some peace of mind with all this and time seems to change the way you are with health issues. I know I would be better at making decisions about treatments now then what I would have been a couple of years ago and that is largely to do with the information from this site. Peoples fears are real to them and rational or not to others, they are still fears.

poseymint
Being in a car accident is one thing that worries me and it's not actually the accident, it's the airbag thing, what sort of damage could an airbag do ? Maybe silly to some but that is a fear of mine.

I actually had this conversation with my hematologist yesterday. My situation is a little different because I'm eight months pregnant. As of Saturday, my count was down to 15 (I've been on steroids for months and tried two rounds of IVIG-nothing is really working). And yes, she called me at 8pm on New Years Eve to tell me. Happy New Year!

Anyway, I asked her if I should be concerned with going about my business. She told me that she is not concerned with spontaneous bleeding at this point, in fact it is quite rare. Just go about my business, but be careful. However, when I told her that I'm still working and that I drive 40 minutes each way she did get a little concerned. While she is not worried about sponatenous bleeding, she said if I did get in a car accident at this level there would be cause for concern. She wants me to get my OB's opinion when I see her tomorrow, but at this point she thinks I shouldn't be driving that distance anymore. (But again, I am 8 months pregnant). So I guess like the others have said, every situation is different.

I know I was Scared to death at diagnosis. What the Heck is ITP!!!!
An air bag comes out at up to 200mph. The seat belt is supposed to keep you from getting to close when the bag is deployed. So be sure to wear seat belt also.

Well, this has been interesting for me to read. I had my first and only bout with single digits this past autumn; my numbers were often 2 or less, and they were unmoving for over a month. I was in the hospital 4 times, once for 9 days. I was worried that my numbers would never rise. Nplate got me out of the platelet valley and a splenectomy has kept me out for 2 months now (just yesterday my values were 314).

This thread has discussed fear. My experience certainly seemed like an emergency and I realized at one point that I had to explicitly deal with fear as a problem in itself. Certainly fear can help to focus one’s attention if this is required, but beyond this very limited aid, fear is not helpful.

I drive at least 45 minutes each way to work and my hematology clinic is right near work. So during my nadir I stopped driving for fear of causing an accident should I suffer a brain aneurysm. As a car passenger I wore a helmet in case of a fender bender (or worst). After reading some of the posts in this thread, I ask myself: Was I overreacting? I did have more and more spontaneous bruises everyday- I was not-so-slowly turning deep purple. On the other hand, fellow-ITPer here have posted about simply going about their lives, and sound almost cavalier about their very low numbers. I appreciate that if the spleen is out and no drugs are working, then the best one can do is go about one’s life without fear (because fear doesn’t help and detracts from life). The question remains for me- if my numbers are 2, I’m increasingly purple everyday, is it responsible for me to out driving?

I don't have a car so that's one thing I've not had to worry about. But I did used to take the bus to work every day, and it would go over several speed bumps far too fast, almost taking off and then crashing down. One day when my count was 1 or 2, the bump of the bus bruised my bum, and the natal cleft.. the crack between the buttocks, was completely purple. Very funny but shows that even taking the bus is fraught with danger!

Honestly, when my counts were below 5, I drove myself to work without much thought. My doctor told me to just go about life normally, so I did. No hospital, no parking on the couch, just rushing through life. I was able to get counts up with Prednisone though.

A woman I know was driving to work one day...no platelet problems. She had a brain aneurysm burst while driving and died in the car accident that ensued. No one else was hurt. Why her and not me? It just wasn't my time.

Is it really a risk to drive with low counts? I don't know the answer to that. I guess it depends on the doctor and his response to the situation. We tend to take our cues from them.

I think driving in general is a risk at times. My sister inlaws sister died of a brain aneurysm sitting at the table playing cards. ITP or not, we do not know when our time is up.