Newly diagnosed- trying to sort through it all

Hi, I'm Scott. I'm 45 and was just diagnosed with ITP. I went to the doctor for an annual checkup and my platelet count came back at 22. My GP called me and I went back to his office to redo the CBC. This one came back at 11. He put in a referral for an oncologist/hematologist. This doctor put me on the 4 day dose of dexamethazone 40 mg. My next blood test showed an improvement up to 72. The steroids game me the worst set of hickups for 4 straigt days. Anyone else get these?

As for now, I'm on a weekly blood test regimine and wait and see.

I am a firefighter/paramedic that is very active. This is going to be a life changing event for sure. I'm trying to gather as much info as possible. I'm researching possible causes (like everyone with ITP). As a medic we are exposed to lots of patients that have a variety of illnesses and viruses. I also just got a flu vaccine, about 3 weeks before my first blood test. Curious if there is a link?

Any input/support is welcomed.

Thanks
Scott

Hi Scott! Vaccines can sometimes trigger ITP. There is a chance that this will be a temporary thing, or it could become chronic. Chronic does not mean that you will always have low counts. Some treatments induce remission and during those times, you will be treatment free and life will be normal again. If that isn't possible, there are ways to maintain safe counts. It would be a good idea to read about all of the treatments (if you haven't already) and discuss them with your doctor. You might eventually find one that works for you with minimal side effects.

Sandi clearly knows more having been at this for years but being in a similar situation to you (I'm 44) I've been reading a lot and discovered the following:

1) They really don't know what causes it. Sometimes, maybe, possibly H-pylori bacterial infection (might as well get that checked), maybe some chemicals cause/trigger it. Who knows. Might as well experiment with your diet and other habits to see if maybe possibly it might help. No-one can say it won't as again, they don't understand what's causing it.

2) They have no good treatment. Rituxin treatment works for 40% or so of those who have it to induce remisssion sometimes for years or maybe even permanently.

3) Spleenectomy is still talked about a lot but again it just treats the symptoms and is not a cure and even when it's removed your body may find ways to destroy the platelets anyways. Pretty drastic thing to have done for what might not be a permanent cure. I'm skeptical about this one after all I've read the past month.

If when I go back in again this week my counts are still low I'm possibly headed towards trying Rituxin but I might just wait a bit longer since I'm symptom free other than having a low count. You are in a more dangerous occupation though so it's much more of a risk for you to have low counts.

Russ and Sandi
Thanks for the replies. On my 2nd test after the steroids I went up to 82. I just had a CBC yesterday and I find out on Monday the results. I am also hoping to return to work. I have to get cleared by a doctor at UCI. My doctor says a count of 50 is safe enough to go back to work.

I have been reading alot and I am looking at diet changes. Like, more leafy greens (spinach, kale), good vitamin supplements, limiting alcohol.

I am really hoping this is due to the flu vaccine and a virus I was exposed to and temporary.

Hope you had a good Thanksgiving.

Scott

Here is a useful presentation I've seen. Not sure where I came across this:

fhs.mcmaster.ca/medicine/hematology/ITP-2010/player.html

Also, this website seems pretty good and has links to presentation made by US doctors:

www.itpsupport.org.uk/

Well, my platelet came up to 108,000 and my doctor and the UCI doctor cleared me to go back to work!!!

I also had an appointment with a 2nd hematologist and he redrew my blood and I came up to 179,000. that was 13 days post steroids. He definitely feels this was a reaction to the flu vaccine and hopefully won't happen again. He did say there is a possibility it may return if I get the flu or a cold.

So for now I am in remission. I am so happy and thankful. To those still struggling, I'll pray that you too can go into remission.

The last few weeks were so very stressful.

Scott

My doctor says a count of 50 is safe enough to go back to work.

Interesting....everyone is different I suppose.
Here I am at work with a count of 3K.
.

weirdjack
I wonder what you do. As a firefighter we are in a hazardouse line of work and prone to injuries. When a house or building is on fire we are expected to throw ladders up to the roof, carry up to 100 lbs of gear and take axes and chainsaws to the roof walk on slippery tile roofs and cut a hole in the roof. It is very easy to slip and fall, have heavy concrete tiles slide off the roof and possibly hit you in the head (helmet on of course). Inside a building on fire the ceilings can fall in, structural members can fail and collapse on you, you face ewplosions. We work on the freeway on traffic accidents where the idiot drivers continue to race past at 70 mph when we have our lights on and are trying to help people. Each year firefighters are hit on the roads by drivers not paying attention. These are only a few of the multitude of jobs we are expected to do. That is why I think he wants me at 50,000.

Scott

I had ITP for more than half of my 56 year life. It has been up and down like a sine wave. After a while It began to drive me crazy, but fortunately, I learned to only respond when I was symptomatic and this improved my mental health.

Have a Blessed New Year!
Bob

I am so happy for you that your platelets rose so quickly. Mine have not been above 11 since 12/28.

Thank you for sharing. I received a flu shot at the end of September and the next day it was the worst bruise at the injection site I had ever seen. I don't know if my itp was set off prior to the injection or from the injection.