counts below 20K-10K?

ok im very curious what happens when you let your platelets drop below 20k OR below 10K??? Ive always treated at 20K and im fed up with treatments not working.... I read how people have a count of 5,000 at the hospital-- do they make you stay there and receive treatment or just send you home?? what are the true risks of letting this go?

If you are lucky, very little. My son has been under 20K since last christmas, He gets more bruises and petechiae on his legs. He's had one bad nosebleed. Other than that, he gets on with most of his life as normal, no hospital, no treatment.

I am not suggesting that you necessarily want to do this, but it is a possibility. Low counts are not necessarily life threatening. Very few people die of ITP. There are people out there for whom treatment doesn't work who manage with low counts by default. And then there are those who weigh up the options and choose not to treat. You need to make an informed decision

Good luck, Ali

Brittany:

It seems that everyone is different as to what they do with low counts. Some people just continue with their lives and some are admitted to the hospital. A lot depends on their situation. Under 5k, I kept going to work, but did treat with either Prednisone or Rituxan. At 20k, I didn't treat yet.

What have you tried? There are risks of just letting it go and I wouldn't recommend that unless you are totally out of options. Some people have no choice living with low counts because nothing works, but most of the time, the new TPO's have a good response rate.

brittany like all things with ITP I think the decision to treat or not is a decision that only you can make for yourself. It needs to be made with your history and what you feel comfortable with, I don't think with my history that I wouldn't treat as I tend to bleed a lot at counts below 10k so I would always be looking for options once I got to 20 or 30. I am made stay in hospital until counts get to a least 20 BUT this is just me. As Allison said some people are fine at low counts.

ive tried prednisone and ivig which brought numbers up but dropped very quickly. so i just tried rituxan which did not work at all. yesterday my platelets were 22 and they want them checked again tomorrow and mentioned possible platelet transfusion then maybe nplate.... i was considering saying no. but ive never let them go below 20 before and am considering letting it go--- but wanted to see if others usually try to stay above 20 and those that dont

What's the reason for platelet transfusion, I usually only get platelets if there is bleeding and it is needed to stop bleeding.

I agree with milly, platelet transfusion can stimulate platelet destruction - it is used usually for rescue if you are having surgery or bleeding.
Erica

Brittany, what symptoms are you having with low counts? The doctors who have suggested hospitalization or platelet transfusions--do they have much experience with ITP?

Like Karen the suggestion of platelet transfusion has me wondering if your doctors are experienced with ITP. Maybe time for a second opinion with a more experienced doctor.

Most up to date information about treatments is here..

bloodjournal.hematologylibrary.org/content/115/2/168.full

I had platelet transfusions in the very early days of ITP in 1994 then I guess they figured it was pointless giving me platelets if I was just destroying them straight away. I hadn't had them since though the occasional heamotology nurse do ask if I get them and I somehow politely say no.

Ps How long have you tried rituximab. It can take between 9 and 12 weeks to actually show an increase in platelets so I have read on here via Sandi? So it may be a time factor with you?

Usually Steroid along with IVIG works for me but hadn't had that this year because Steroids alone worked back in dec. I recently had rituximab but platelets were already up as been on pred for the week. But it can take a while for the platelets to increase on that judging by what I have read on here. By the way I have been told that the next time I may well have NPlate now its in England. Or whatever its posh name is which I was able to relate to NPlate because of this webiste.

it was the nurse that mentioned possible transfusion if i dropped below 20 so not sure if the dr had agreed with this (had platelets checked today so waiting to here what dr. says).
Also DR. did not mention hospitalization if they drop below 20-- we really havent discussed what would happen if i chose to let them go below.... and he is actually my second opinion, my last hemo only wanted to do steroids, i was on steroids for approx 1yr tappering up&down up&down i couldnt stand it anymore so found new dr.

i guess if it could take rituxin that long to show affects... it may still work for me. 1st transfusion platelets 27. 2nd transfusion up to 125. then 3rd transfusion down to 25. 4th transfusion 22. not sure where they are a week later waiting results.... they seemed to think they would prob drop more.
so we will see what happens (i keep trying to be positive that they may still go up--- and if not- how low i will let them go)

My 4 year old daughter has had a count between 10 and 20 for over a year and has never been treated. She bruises lots (between 80-100 bruises is normal) and she has petechiae somewhere most of the time. She has never had a nosebleed, but she does bleed a lot when she cuts herself - normally not too bad, but when she scrapped the back of her foot a couple of weeks ago it did take 1.5 days to stop bleeding. We are told we have to take her to hospital everytime she hits her head or stomach badly. Unfortunately she seems to hit her head once a month. They make her stay in overnight to do hourly obs and quite often when she hits her head it continues to swell for about 12 hours after in which case they do a platelet transfussion.

I find it really hard never knowing when school are going to phone to say shes hit her head and then having to sort out child care for my other girls and working out all the logistics of getting to hospital at short notice, but I would rather this than treatment as from what I read the side effects of treatment are not nice and I wouldn't want to put my daughter through that if I don't need to.

brittany wrote: it was the nurse that mentioned possible transfusion if i dropped below 20 so not sure if the dr had agreed with this (had platelets checked today so waiting to here what dr. says).

Okay that's different. Some nurses think they are doctors and give out information that they shouldn't. Nurse I see does that and I just ignore her and go my own way anyway.

I had a nurse do that too once when I was at 3k. She gave me my count and said that I should probably stay for a transfusion. I just said no thanks and went back to work.

arent you scared when they are below 10K?? supposedly you could spontaneously bleed.....

Brittany,
My platelets were below 5 last July and in August. You are right about the doctors. They wouldn't let me leave the hospital (in July I was there for almost 2 weeks). I started watching what I was eating and drinking and by the first part of August--I didn't have hardly any signs of bleeding. Certain foods and drinks do bring down your platelet count (also certain meds do to). I ended up doing 4 Decadron pulses at different intervals. This did work for me as I have made it one year without any other treatment. My first time with ITP was in 2006 and at that time I did one Decadron pulse; this put me into a 4-year remission.

I know it may be dangerous, but if my platelets do fall again (haven't had a blood test in 5 months), I may just try to go on with them at a low count. The doctors seem to really stress me out more than the ITP. You just need to make sure that you don't have any real active signs of bleeding--that's whats really important. Last August when my platelets were at 1000 I still didn't have much signs of bleeding.

Also, the reason the platelet transfusion isn't working is because you are not getting an exact match. They are just giving you platelets without a thorough match-which is really important. The nurse at the hospital I was in told me about this.

Good luck to you--just be careful with your health.
Dee Dee

thanks everyone for your side/thoughts. I think im going to let go without treatment for a while.... i will let you all know how it goes

I'll just repeat what I said in another thread that asked the question "can you live with low counts":

The answer to your question is certainly "yes" -- you can live with very low counts without treatment. I live with low counts, sometimes down to zero, as do others; not by choice, but simply because I have never found a treatment that works (other than IVIG, which will raise my counts only for about 72 hours; I use it in a pinch).

But I would not live with such low counts if I had a choice. Obviously, low counts bring risk. I have had three head bleeds at low counts; #3 had several causes but the first two bleeds were caused entirely by single digit counts. Bleed #2 put me in the hospital for six months, and I had to re-learn how to talk, walk, and use my right arm and hand. While I was very lucky and had a great recovery, the recovery was not complete and the stroke caused some permanent loss of use.

I hasten to add that head bleeds are extremely rare in ITP, although it is what many ITPers obsess about. I have had many low counts that did not cause head bleeds, so even in my case (where I seem prone to head bleeds for reasons no one understands) they are extremely rare.

Would I take this risk if I had a choice. No. My own health aside, it causes extraordinary stress to my family -- every simple headache brings stress and fear, and my 5-year old son doesn't always understand why I can't effectively coach his little league team, like other fathers do.

Each of us has to make our own choices, obviously, and ITP seems to treat different people differently. But, to answer a question you did not ask -- would I live with very low counts if I had a treatment (any treatment) that worked? No. Living above 30 is bliss.

Just my thoughts on this, would I live with low counts if I didn't have to, absolutely not. That whole idea just scares me too much, not scared of the death thing, that's going to happen to everyone and most likely not from ITP, I intend to die from really old age. But I am really scared of this head bleed bit and I will do anything to stop this from happening.

I look at ITP the same as I look at any other medical condition, if I had a breast lump would I do anything to get it fixed, you bet I would the same as I would do anything to get those platelets to a safe count I sure don't want my family to have that worry.
I think Gort makes a great point with the stress this causes family and the lasting effects that a brain bleed can leave you with and I know that brain bleeds are rare but it does happen.
All of us have our comfort zone with this and I think it a personal choice.

I agree with both of you; but, you also need to look at the fact that too many meds could also be causing other illnesses. So, in the end, you could end up with very low counts along with other medical conditions. In my case, my family members had other problems with their bone marrow, so I feel I want to take it easy on the meds (also don't drink or smoke). You need to look at all angles to see what might happen to your own body, research, and at least try to do whats best for yourself. Then, at least if something does happen, you can feel that you did everything possible.

One other person posted that she has been doing very well on N-Plate. Now she just learned that the U.S. Medicare/Medicale will no longer pay for her treatment starting in 2012. So you just never know what you can count on.

I agree with you DeeDee, you do have to weigh up the pros and cons of treating which is why I feel somewhat uncomfortable when newly diagnosed people talk about using the new TPO drugs straight off. I use Nplate but as a last resort because I can't live with counts under 10, and six other drugs either haven't worked or can't be taken long term. So I have to think about low counts with bleeding issues versus a drug whose long term side effects we don't yet know. I also take my age into consideration.

Having said all that, I don't panic when my count is below 10 probably because my haematologist doesn't panic and it's just always been taken that I'll go to work and continue life as usual.

DeeDee Marie wrote: but, you also need to look at the fact that too many meds could also be causing other illnesses. So, in the end, you could end up with very low counts along with other medical conditions.

I have never suggested, nor would I ever suggest, taking meds (or anything, even food) without due consideration of side effects and other impacts. As I have posted frequently on this board, in my view, newly diagnosed ITPers should get a grip on the fear or worry, educate themselves, and then make a list of the treatments that are appropriate given that person's health, family, medical insurance, counts, and other issues. Then, for each such treatment, you list the pro's and con's, and, in consultation with medical providers and family, you decide which you want to try, and in what order. Side effects and other impacts are a huge part of the decision.

When Rituxan first became available for ITP, years ago, I resisted taking it because of the possible side effects, and, in fact I did not try Rituxan for many years. At that time, I was trying various natural and homeopathic options, none of which ended up working for me, including going completely vegan for a very long time. Later, when the list of things that had not "worked" for me grew ever longer, Rituxan was sitting there as an obvious choice. It hasn't worked for me yet, but, the next time my count drops below 10, I am going to try it again, but in different dosages and timings.

This thread and the other similar thread consider two important questions, but not every question, about ITP: can you live with low counts, and would you choose to live with low counts if you had a treatment option that worked.

The answer to the first question is, obviously, a resounding yes. There are several regular posters on this board who live just fine with counts below 20, which is what I consider low. Above 20, there is not much I won't do. Between 10 and 20, I modulate my activities some. Below 10, I treat if I have an option to do so, given other issues that may be ongoing. This range works for me, but other do and should have a different range. I am pretty comfortable above 10, and I have a lot of years of experience to suggest above 10 is really just fine for me (although that count would freak out 99% of the ER doctors in the US). Below 10 is a different story.

Each of us has to decide for ourselves the answer to the second question -- whether someone with an option that "works" should treat below 10. Obviously, that is up to each one of us. But, I will just repeat my opinion that, for me, I would treat 100% of the time below 10 if I had the option to do so. Unfortunately, I don't have that option (other than IVIG, which works very short term for me and is something I use only sparingly because of the side effects from long-term use). My opinion in this regard certainly arises from my own experiences with ITP, including the time spent in neuro rehab learning how to talk and to walk. I would urge anyone with an option that "works" to use that option below 10, or whatever other number makes sense in that person's particular situation. Just my $0.02.

I agree with both of you (Ann & Gort). I don't like the fact--like Ann said--that newly diagnosed patients are given almost every drug out there. Sometimes the doctor doen't even give their body time to heal from one drug; and, then they are off to another drug. I will have to say this is what they wanted to do to me last year when I was in the hospital. I had my relapse after 4 years. The doctor was in a panic because my platelets were falling to 1000 (even after IVIG). He said he thought I was going to be a chronic case (and this has stayed in my mind). He was going to start me on Rituxan right after giving me the IVIG and one series of Decadron pulses. Then we decided I would be referred to USC (Dr. Liebman) to start a new trial study.

When I was waiting in the lobby at USC to start the paperwork for the trial study, my platelets started going up (from 12000 earlier in the day to 31000 while at USC). So, I didn't qualify for the study. But, the nurse at USC wanted me to stop the Decadron pulses so I could qualify for the study; I went for the Decadron pulses and my platelets kept going up.

But, like Gort said I may go for other treatments down the road; we'll just have to wait and see. But, even if my platelets go back to 1000, I am still going to take my time on each treatment plan I try. My body just can't take one treatment after another; it needs a rest in between. I will just follow this plan even though it still does scare me. It's hard to understand why my platelets started going back up when the Decadron pulses were not working. I did stop taking one of my meds (Sinequan) right before they started going back up--so you never really know.

Another thing I wanted to add is why we have people like Joan Young and others who go into a total remission; I wanted to also include Wam (or William) from the story Tic Tac Toe. I had emailed him while I was in the hospital last year. He has been in at least a 30-year remission. And, he started out with very low platelets and a lot of bleeding (while in the Veterans hospital). He also stressed to me to take good care of your health; get a lot of rest and keep the stressers down (in his words: get the monkey off your back). But, who's to say if it is possible in the world the way it is today. But I have tried to do some of the things he told me and I do seem to feel better.

Just thought I would add this as we do have many success stories out there.

DeeDee, I agree with what you are saying I think what William is saying really helps, get rest, take care of yourself and not to stress the little things and I have trying to do this as well.

I also think for some people including myself that long remissions are possible, when I was about 5 or 6 I had a bleeding problem that no dx was ever given, was it ITP? don't really know but if it was I have had a 45 year remission. The last time my platelets dropped I think it was a combination of other health problems that I was trying to ignore and stress, my daughter, her husband and my two grandchildren had moved to another country, I was miserable, very stressful time.
So I have learnt that I need to take care of my health and to try not to stress about to much and you are right when you say "you never really know" but I guess time will tell for all of us. We do what we are comfortable with and what works for us when we need to.

Milly, it really sounds like you are on the right tract; you're taking better care of yourself and trying to do what's best for yourself. This is all we really can do. I've learned that I, myself, need to stop trying to please everyone else. Once I do this one little thing, I've learned to take a lot better care of myself. My whole life was dedicated to my family and kids; then it was volunteer work and trying to please others. Now, I just want to live a healthy, peaceful life.