ITP

[leny123]

Hi there!

My sister in law has been diagnosed with ITP, her platelet now is below 10 despite blood transfussion. She is now experiencing bleeding. Her doctor suggested for a bone marrow test...

Any advice from you especially to those who are experiencing this kind of blood abnormalities?

[Robert1959]

What medications has your sister-in-law started since her diagnosis? (eg Prednisone). A bone marrow test is not always required but will help rule out any other potential causes if it is not ITP. The process to resolve or manage this illness may take quite some time as there are many different treatments available and so she will have to be patient until the doctors find one that works for her. I have had some bone marrow tests and they did not hurt so she need not worry about that.

[Whitespot in reply to Robert1959]

Robert how long have you had ITP and have you gotten your count under control?

[leny123 in reply to Whitespot]

She is suffering this blood abnormality for 3 weeks now. She is still in the hospital, just recently, she underwent bone marrow test, we are now waiting for the result from this test.

[Robert1959]

Whitespot

I only had ITP for 9 months from diagnosis to remission (Nov 2014) and so I was categorised as having persistent ITP rather than chronic ITP.

My counts have since been 200+ without medication and I have no idea as to why it started and no idea as to why it just stopped. I am still having 3 monthly blood tests and 6 monthly meetings with my specialist however for the moment.

[tip-3 in reply to Robert1959]

I am happy to hear you are in remission and they informed you it was persistent ITP vs. chronic ITP. I heard it could be from a viral infection (i.e. cold; flu; or any type of flu; etc.) ..... Thank you for your input regarding the 3 monthly blood tests and 6 monthly meetings to keep your ITP under control ... I wish someone had suggested this 3 yrs. ago or at least advised me to come in for blood tests and check it. This would have alleviated all the questions and concerns I have now ..... Best of luck and keep up the platelets .....

[emailkevin]

I was scheduled to take a bone marrow test but cancelled. It is intrusive. Large needles are inserted through your butt into your bone. It leaves scars.

I did not get it though because it is done when it is believed you have a platelet production problem. I had an extremely high IPF (Immature Platelet Fraction). This means that my body was producing platelets excessively.

They were being destroyed, therefore no production problem, and no bone marrow biopsy.

Medical journals recommend that doctors do not recommend bone marrow biopsies when the IPF is high, for it is proof of platelet destruction. But my doctor recommended anyway.

Check the IPF lab results first. If destruction is the case, it may be immune related, parasites, or bacteria.

I'm not a doctor. This is from my personal experiences.

Kev

[leny123 in reply to emailkevin]

Hi Kev,

Really!! thanks for sharing, this info will help a lot.

thank you

leny

[tip-3 in reply to emailkevin]

It was recommended I go see a RA specialist as well as have a bone biopsy before they came to the conclusion I did not need a bone biopsy .. thank GOD ... however I went to a RA specialist cuz I cud not walk well my ankles; feet; arms; hands; etc. were affected. I actually wrapped myself in ace bandages and hobbled down the cellar stairs; but no one addressed the issue until I got so sick and ended up in hospital for 5 days on IVIG and was diagnosed with cellulitis ... I believe I came down with poison oak or whatever; scratched it and this was the result. When I was seeing the RA she put me on Plaquenil ... what a horrible drug ... I immediately stopped taking it ... and prayed it got out of my system fast ... the whites of my eyes turned red/bloodshot looking ... last appointment she checked my hands; feet and made me raise my arms; etc. and I informed her of this medication and that was the last I saw of her ... Now 3 yrs. later platelets low again and on Nplate injections .... I do not see how they did not follow up with me to check my blood and platelet count and was told by another hospital when I developed blood in my urine I went to the E.R. and they informed me my condition was "chronic" ... both hospitals are affiliated and they did not even check my platelet count to see and did not discuss with my the result of the urine test. I know for a fact it was not a UTI or they would have prescribed an antibiotic; but no tests and no word back.

[Rikk68]

Im 82 had low platelets for 25 years I take no meds just high doses vit cthats keeps me going its read Pauli’s linning