Idiopathic thrombocytopenic purpura

[Thinkingabout]

I diagnosed three years ago with Idiopathic thrombocytopenic purpura. I have been taking a weekly injection of NPLATE but recently my platelet count went down to 16,000. I have been very tired, sleeping lots, my joints have lots of pain. My dosage has been increased and the count is going up.

Just wondering if others has had this problem

[NCarolinawoman]

1. I had/have it .Back in 2001

Platelets down to 10,000. Was put on a very high pregnasone dosage. Felt like that drug was killing me. Essentially it killed off my spleen and then it was removed. They went ahead with the splenectomy after my platelet count went up to 80,000. Found out later that my surgeon was reluctant but went ahead.

Survived surgery but got an infection. I was given big fat dose of Cypro. Saved my life but it left me with tendinitis and peripheral neuropathy. Always be aware that Cypro has a black box warning concerning neuropathy.

[Thinkingabout]

4. Did your platelet go up and stay up after spleen was removed?

Thank for your reply.

[NCarolinawoman]

7. Yes, my platelets went up after splenectomy.

They are now on the high end. Sorry about my misspelling of prednisone. Spell- check has apparently never heard of such a word.

[auntAgonist]

2. I had / have it ITP for short. Back in '77 I was diagnosed after

finding bruises all over my body and a menstrual bleed that would not stop. I saw my OB/GYN and he ordered a D&C. I went for pre-op day surgery bloodwork and that's when it was discovered that my platelets were very low. It was so long ago I can't remember what the count was, if I ever knew.

Long story short, prednisone only made me sick. I gained 60 lbs in a very short time and the headaches were unbearable.
The hematologist that was overseeing my situation recommended a splenectomy.
I did get infection after surgery and was very ill for about 6 weeks.

I now have the reverse issue. My platelets tend to run high. Not in the danger zone but my Dr does monitor the numbers.

I don't think that injections were an option back in '77.

Good luck to you.

aA

[Thinkingabout]

3. They have only been approved by FDA but they are expensive, $2500 a shot but settle for $1300.

They are weekly and without insurance would have been impossible. I don't understand why I have the lows and it occurs about every four months. I have not been on prednisone because of diabetes. Seems like I live at the clinic with weekly blood test and injections. When your count is low do you hurt almost like the flu and very tired?

Thanks for your response.

[auntAgonist]

5. Tired, yes. Flu-like ... no, I don't have that symptom at all. n/t

[Thinkingabout]

6. I have joint pain.

[auntAgonist]

8. I am currently experiencing a lot of joint pain especially in my lower body

Seeing a rheumatologist to figure out what's going on. I'm just waiting for his office to call with an appointment.

[marybourg]

9. Have you been tested for lupus?

[Thinkingabout]

10. Yes and test was negative.

[hamsterjill]

11. My daughter was diagnosed with this in the mid 1990's.

She was just entering high school. It was discovered during some routine bloodwork for an outpatient surgical procedure. Her counts were at 27,000 at that point. She never exhibited any of the typical symptoms such as bruising, etc.

We were lucky to find a great pediatric hematologist/oncologist who chose to monitor her counts without any treatment. She was under his care for about 3 years with her counts steadily increasing. I was advised to simply keep her away from certain things (like aspirin in any form). At the time, I was very concerned that he wasn't "doing anything" for her, but she ultimately recovered as spontaneously as she'd developed it.

She's 31 now and (knocking on wood as I type this) has had no other issues with this.

Talk about a grateful mother here!!!

I wish you the best in your fight with ITP. It is a frightening disease and there's never been enough research into the whys and hows of it.

[Thinkingabout]

12. Thanks for your reply. For younger folks it can go into remission but I'm older and it

Has never gone in remission for me. My lowest has been 16,000 recently, now the NPLATE has been increased. No aspirin or nsaids.