Does anyone have ITP, immune thrombocytopenic purpura, or low blood platelets?

[Thinkingabout]

I was diagnosed three years and am current taking NPLATE injections once a week.

[Warpy]

1. I only know it's very treatable

although it's expensive if you're uninsured. It's just one of a whole family of clotting disorders.

[Thinkingabout]

2. Yep, they want to charge $2500 per injection but settle for $1200. I also get weekly blood test to

See what my levels are. My high has been 173,000 and the low was 24,000. I have not met anyone else with this condition and still puzzled but make the best. My doctor tells me I probably had a virus at some time and the virus mimicked my small platelets so my immune system kills the small platelets in the spleen and ergo the low platelet count.

[auntAgonist]

3. Years ago I was diagnosed with ITP Idiopathic Thrombocytopenia. Different from what you have

but after being treated with mega doses of prednisone (1977-1978) with no good results the Dr finally decided to remove my spleen.

I have had no recurrence since.

The problem I have now is platelets that are too high!

They don't stay consistently high and can vary by two or three hundred from month to month. Very odd.

My Hematologist is keeping an eye on it as well as numerous other blood issues I have. So far it's not causing any problem.


Good luck with your situation.

I wish yours was as easy a fix as mine was.

aA
kesha

[Thinkingabout]

4. Thanks for your reply, prednisone is really not an option for me since I am also diabetic.

It has been an experience for me but I am coping, just do not have a good circle in which to share experiences.

[auntAgonist]

5. Has your Dr discussed removing your spleen

I admit to knowing nothing about IMMUNE thrombocytopenia purpura but it sounds very similar to ITP (idiopathic)

I hope you get some help at a much lesser cost

Being diabetic I suppose complicates a lot of health issues for you.

[Thinkingabout]

7. We have discussed removing the spleen but since I am responding to NPLATE we are

going to continue. I have discovered I have a problem taking penicillin type meds so I am off of them, it seems like it is something new all the time.

[auntAgonist]

8. I wish you well. The cost would bury me I'm afraid.

The surgery for me was an easy cure. At the time though they didn't do laparoscopic spleen removal so I do have a large scar.
I've had no bad effects from having had the surgery.

good health to you.

aA
kesha

[Thinkingabout]

9. Fortunately I have medical insurance which is covering most of the cost, or at least they are

accepting the payments given. I keep hoping for some break through but not yet. I doubt I would be getting the injections if I did not have insurance.

[auntAgonist]

6. I did a bit of reading up on it and it looks like 'your' ITP and mine are the same thing. n/t

[arthritisR_US]

10. Had a few episodes of it years ago as a result of

chemo and radiation. Caused vascular brain swelling at its worst and I had a stroke. Been free of it for the past few years.

[Thinkingabout]

11. Thanks for your post. My ITP is not result of Chemo. I read the other day they are

Testing a pill which they developed for rheumatoid arthritis but the results was not great but they will be testing it for ITP until 2015. It works on the immune system. I am happy NPLATE is getting me through for now but a daily pill will help a lot.

[arthritisR_US]

12. The chemo and radiation totally screwed up my

immune system which was what caused my ITP. I am now riddled with autoimmune disorders. Cytoxin and prednisone were what finally got it settled down. A good mate of mine got me in Essiac tea/ liquid and Flora Essence... I have found these great and no side effects.

[Thinkingabout]

13. I had heard about essiac tea some years back, think i will check into it. My lowest

Platelet count was 24,000 and I Had taken two rounds of Amoxicillin so we do not want to take that anymore. I am staying around 100,000 these days and feeling pretty good. I had never heard of ITP before and have learned lots since my diagnosis. Thanks for the tip on Essiac tea, will give it a try.

[arthritisR_US]

14. I woke up the first morning and couldn't separate

my lips, they were dried shut together with blood. Went into the water closet to get warm water to get rid of the blood to get my mouth open and that's when the blood started coming from my eyes, nose and ears...I then collapsed. At the hospital the Dr's told me they couldn't even register a count of my platlets they were so low.

Not a fun condition to deal with there is so much you have to be aware of, vigilant of. It certainly made the cancer treatment difficult. Good luck mate