What to do next?

Hi everyone,

I'm new here, recently diagnosed with ITP and I've been reading the various threads on this forum which have been a great help to me.

My story is this, at the end of June (2012) I got my first blood count back, it was 8k. My doctor told me I had ITP and referred me to haematologist (appt wasn't until 4 weeks after 1st results back) Got blood tested 1 week after initial test but lab lost them before testing so tested again the following week, results came back 6k, doc phoned haematologist and they put me on 50mg/day of prednisone.

Next blood taken at hospital on the day I met haematologist for 1st time (1 week after starting pred) and I was up at 165. He was happy so cut me to 40mg/day immediately, followed by down to 30mg/day the following week. I got more bloods done, down to 47k so sticking at 30mg/day rather than dropping to 20mg. More bloods the following week - 49k.

Next appt with haematologist was the following week and I'm up to 79k, he wants to give the pred a bit longer so advises to stay on it at 30mg/day for further 3 weeks before seeing him again where we will discuss alternative treatments depending on results of next bloods. He said if I wasn't on the pred he wouldn't be worried about my level, he wouldn't medicate at my current levels.

That appt is next week, so I guess what I'm asking you all is what should I be asking my haematologist at my next appt? Should I approach treatments in a certain order?
Are there things i should get tests for eg H.pylori and if so when?
What things should he be ruling out as a cause of the ITP?

Also, should I be taking vitamins, or even that papaya leaf stuff I see mentioned?
Are there foods I should take/avoid?

The side effects from the pred haven't been nice, and almost all the other medications seem to have one side effect or another, has anyone decided not to medicate and just live with low counts? I felt healthier with a low count than I did when I went on the medication. I'm not thinking of doing that but I wonder if anyone has?

I bruised easily when I had a count of 6k but apart from that I felt fine, is that normal? I also had a few cuts then but they didn't bleed more than usual, is that normal?

As I'm new to ITP I don't really know what it all means, when I'm low should I be ultra careful? Someone mentioned not flying, or travelling in cars.

Anyway, I tend to ramble on a bit when I type so thank you for taking the time to read my post, if you can help with advice on what to do next that would be great.

PS

steroids are a first line of treatment, prednisone isnt nice but your responding to it so 30mg/day isnt bad. im on 120 right now. Ask your doctor before you take any other meds or vitamins, Tylenol is the only thing im aloud. Your doctor should have ran blood tests for things such as hepatitis, stds, etc...stool sample for h. pylori. Havent tried papaya leaf extract, but be sure to eat green, lots of salad. There are people that live with low counts and no meds, pretty sure the rule of thumb for safe is 20-50, but every case of itp is different, you just have to learn what you can and cannot do with low counts. Im sure i missed something, but your on the right site and someone else with more knowledge will chime in.

Wow, lots of questions, hope I get them all!

Your current treatment is typical and usually the first tried. It's not unusual to be on steroids for a few months. If it's not working though and the side effects get to be too harsh, then you'll know it's time to move on down the line. There really isn't a set in stone rule as to what comes next, although splenectomy is getting pushed further and further down that line.

It sounds like you have a good doctor so far. He's not over treating or panicking at low counts. Good. A safe count is anything over 20 or 30k. Most do not treat until then.

There really are no known causes of ITP, so there isn't much to test for. ITP is usually the result of a genetic predisposition and something comes along to trigger that. It could be a virus, a medication, a supplement, a toxin, etc. You never know. Treating H. Pylori rarely results in eradication of ITP. I've seen a handful of people over the years have success with it...mostly temporary. Getting tested though is never a bad idea and I would bring it up with your doctor.

Vitamins won't help, but they shouldn't hurt either. As for the Papaya, it seems to be an over blown theory here lately. Read the threads. Not much success. Very few of us avoid any foods. They don't really cause counts to drop, but can cause platelets to be less sticky, so you might avoid some if counts are low. Some people do and some people don't bother. Vitamin E and fish oils are probably not a good idea if counts are down.

Some people choose to live with low counts rather than treat. Most do not do so early in the diagnosis though. Everyone generally goes down the line and if they have little luck, they either keep trying or stop treating. It comes down to a comfort level. Some get to that point and some do not.

Not having symptoms at low counts can be a good thing. Some people do feel just fine, others feel tired, some bruise and bleed more. Everyone is different. If your body can handle the low counts, that's great. There is no normal when it comes to symptoms.

As for traveling, again, all different. Some drive and fly at low counts and others wouldn't dare. Some of that depends on the advice they get from their doctors.

You have a great attitude, you are nice and calm. Ask away!