diagnosed with ITP a few weeks ago

I am 30 years old and was diagnosed with ITP a few weeks ago. It was pure luck and chance that I caught this. I've never been the type of person to see the doctor often or to ask the doctor about something as minor as petechiae on my legs (I thought they were freckles). My wife worries a lot more and she notices all of these symptoms and encourages me to ask about them. So a few weeks ago I was sick and she wanted me to go see the doctor and in passing I remember to mention the petechiae on my legs. The doctor says ok I will send you for blood work to check your platelet levels. I had to google what a platelet was haha. I go home and forget about it for a while until the next week I start getting some really bad unexplained bruising. Again I let the bruising go on for a few days as I just chaulked it up to exercising too hard. My wife on the other hand is really concerned and she finally forces me to get my blood work done. Within 30 minutes of getting my blood work done, I had the on call doctor at the medi-clinic calling me after hours insisting that I need to get to the ER as soon as possible as my platelets were at 3 and if I tripped and fell, that'd be the end of it. So in a panic, we rush to the ER and get admitted to the hospital for 4 days. I had 3 days of IVIG which brought my platelets up to about 115.

So I end up leaving the hospital after 4 days with good platelet levels and a prescription for prednisone. I have been on 100mg/day of prednisone and haven't really noticed any side effects which is great. The next week my platelets were still at 115. Then the following week they dropped to 35 and a few days later to 32. So I fear the prednisone is not working.

I spoke to my hematologist and he didn't really say much. He seems to think that platelets of 20 are good enough for normal life. What are peoples thoughts on levels in and around 20? (side note: the units are *10^9 platelets per litre of blood, I notice some other people use *10^6 per litre of blood)

I am also curious as to how resilient the head is at preventing a brain bleed. Are brain bleeds something I should be worried about or do you need to be beat with a bat over the head to get one. For example if someone punched me in the head, would I for sure get a brain bleed. How do I know if I am having a brain bleed. Is spontaneous bleeding in other parts of the body fatal?

Is drinking alcohol bad for platelet counts. If I want to get rip roaring drunk during the holiday season is that going to land me in the ER for low platelets.

One last thing, it seems like the alternatives for medication out there are promacta, rituxan, and Nplates. What are peoples thoughts on these drugs?

Thanks Derek.

The whole brain bleed thing is the scariest for me as well. I really can't answer how easy or not easy it happens. I have had ITP for a year now and have been at very low counts way more than I wanted. No brain bleed. I've had minor nose bleeds, look like I used a steak knife to shave, bruises all over, mouth blood blisters (really fun), and colon bleeding.
Treatments. Read the treatment strings is your best bet. Generally prednisone is the first try. There are lots of others to try. pdsa.org/treatments.html

Spontaneous brain bleeds occur more often with advanced age. You have youth on your side. This is the kind of bleed I worry about most, the kind where the vessel just pops without any kind of trauma.

As for head-banging... It was maybe 5 years ago or longer, when I was firmly beyond age 60, that I almost cracked my skull open getting into an unfamiliar car... The kind of whack that makes stars appear. My count that morning was in the 10-15 range, as I recall. Had a golf ball-size lump for a few days, but was perfectly fine otherwise.

If your daily activities or profession makes head trauma a likelihood instead of a rarity, you should perhaps think of alternatives until you can stabilize your counts. Otherwise, don't lose sleep over it.

derek181 wrote: ... Within 30 minutes of getting my blood work done, I had the on call doctor at the medi-clinic calling me after hours insisting that I need to get to the ER as soon as possible as my platelets were at 3 and if I tripped and fell, that'd be the end of it.

Well, yes you did fall and that was indeed the end of it. But that was an alternate reality. In this reality you are fine.

derek181 wrote: ... I spoke to my hematologist and he didn't really say much. He seems to think that platelets of 20 are good enough for normal life. What are peoples thoughts on levels in and around 20?

Right, the lower threshold for treatment is 20 to 30. The problem with that though is that there is a lot of variance from day to day. So a higher number that rarely drops below 20 might be a better way to think of it. If you are going all the way down to 3 that doesn't bode well as a possibility.

derek181 wrote: ... One last thing, it seems like the alternatives for medication out there are promacta, rituxan, and Nplates. What are peoples thoughts on these drugs?

ITP treatments are a pretty intense subject (see my treatments page). Generally it is a good idea to plan one step ahead. That is, think/research about what drug you'll try next if the current one you're on fails.

Good luck...

Hi Derek:

I'm glad you found us. Sometimes the fear of ITP is worse than the ITP. I think it was a bit of an exaggeration to say that a fall would be the end of it. Doctors who are not familiar with ITP will panic at low numbers and make you feel like you're at death's door. That is usually not the case. Low numbers do not equal a medical emergency, however, symptoms of bleeding are. People with ITP can have low numbers and have few symptoms. That is a good thing.

As Janet said, age raises the risk of bleeding because of thin blood vessels. Most healthy young people can handle low counts just fine. Some are known to be bleeders though for unknown reasons and you'll know if you are a bleeder by the symptoms. Symptoms of a brain bleed (stroke) are: Thunderclap headache, vomiting, loss of vision, loss of use of extremities, inability to speak.....the usual stroke symptoms. I have rarely ever seen this happen from low counts. I've seen strokes more often in ITP patients with higher counts, even patients in their teens and twenties. There are other clotting disorders that can go along with ITP and very few people are tested for them.

20k is considered to be a safe level for daily living and if you can maintain counts above that, you're doing okay. 50k is even better. If counts are low, I wouldn't get smashed over the holidays. Alcohol can affect platelet function so if platelets are down, they may not work very well. Getting smashed also raise the risk of a fall and even though it might not kill you, it wouldn't be good. You might have to simmer down this year. N-Plate, Promacta and Rituxan are all good treatment choices. They all have side effects and work in different ways, so reading about that will help you to make a choice. We can help you if it comes to that.

Derek, Hi and welcome. Thanks for your story. Your wife really cares about you- nice. Sorry you have ITP but you have come to a good place for information. I've read of a couple people who have had brain bleeds on the forum over the years. They had lowish counts but no head injury, just spontaneous bleeding. Like Sandi said its a stroke, so the worst thunderclap headache ever. I have fallen and hit my head with low counts(15). Got two black eyes but brain was fine. Its best to keep counts above 20-30K if you can. I have never heard of bleeding in other parts of the body being fatal. I used to worry about car accidents with low counts, so I stayed off the freeway if counts were below 20K. Its important to look at symptoms and not just numbers. If your bruises go away at 32K then thats something to pay attention to. If you have blood blisters in your mouth that is usually a bad sign, so meds should be increased to get the numbers up. You kind of have to get to know how your body is doing with low platelets- everyone is so different.

You are on a very high dose of prednisone for not a great response. Your doctor will probably try something else rather than stay at that high dose. Yes, alcohol inhibits platelet function or as they say "thins the blood". Also aspirin knocks out platelets, Ibuprophen and Omega 3 vitamins also inhibit platelet function.

I have been on Rituxin, Promacta and Nplate. Rituxin didn't do much for me but many people have a years remission or more. There are risks with that drug, its knocks out the B cells so increased risks of illness. I didn't have any problems with illness or side effects. Promacta and Nplate are similar but not the same. I have tried both and prefer Nplate because it has no side effects for me. Some do better on Promacta. You kind of have to read up on the drugs and see which appeals to you. Also what your insurance will pay for. Your doctor has not mentioned splenectomy? Thats good, your ITP might be just a temporary thing. Hope so.

Derek
Welcome. It is all very scary at first but you soon get to grips with it.
Alcohol can inhibit platelet production in some people. It has never made any difference to my counts.
Aspirin & NSIADs affects the clotting ability of platelets rather than diminishing production.
I've been on various treatment over the last 3 years. Eltrombopag (Promacta) seems to suit me the best.
I've still got my spleen and I'm not parting with it.