Three weeks with ITP

Hello All,
I was recently diagnosed with ITP. I had a platelet count of 1 and was admitted into the hospital.I've had two platelet infusions, three days of IVIG and now I'm taking 30mg of prednisone. When I was discharged from the hospital my platelets were at 101k (woo hoo!) but on Monday I was told by my hematologist that my count dropped to 35k. (How is that possible??)This has been one of the most stressful experiences of my life but I'm trying to stay positive. I would really appreciate any advice or input from anyone regarding living with ITP.

P.S. Has anyone developed acne while taking prednisone?

Hi Heavenlyshortie,

Almost everybody on prednsone has some kind of acne. Some more than others. It goes away as soon as you stop taking it.
35k is not great, but still save. What causes the drop? I think nobody knows. But on the happy side when your count goes up also nobody knows why.

My advice (4 years of ITP) would be to remain calm. ITP is sh..., but as soon as you get over the initial shock, life gets back to almost normal.

My doc once said that ITP won't keep me from growing old. In fact it may reduce my risk of a stroke/hear attack.

So try to stay strong an positive!!!

Cheers
Joerg

Hello there! Sorry you were diagnosed with ITP. Stick with the Forum, you will learn a lot.

Counts tend to drop as treatments wear off. IVIG is pretty temporary and usually only lasts a few days or weeks. It's a good rescue treatment to get counts up, but they won't stay there. Prednisone can give you a better shot at counts lasting longer, but 30 mg's is a low starting dose and it's hard to tell if you are responding to it since you also had IVIG. Platelet transfusions are pretty useless; they don't last more than a few hours and it's not normally given as a treatment.

It can take time to find a treatment that will work for you and one that you can tolerate. Patience is the key and I know that is hard, but as long as you are over 30k, your counts are at a safe level.

Hi

I was diagnosed in dec 2012 (when I was 31) and had a count of 1. I didn't respond much to 60mg pred so had ivig. My ivig only ever lasted about 3 weeks. Interestingly my counts after ivig were higher each time - but that just meant they fell faster. I was usually back under a count of 30 within 3 weeks - even from counts of over 200. It's your immune system coating those platelets & destroying them that makes your count drop so fast.

Ivig has short term effects for most people who have it. Some get lucky - I met one woman in hospital who got a 3 year remission following ivig - but for most of us a month is good - but as little as one week before low counts is not unheard of.

This forum literally saved my sanity - the members here taught me to read up on treatments to get remission and make decisions about what was best for ME! Other options are out there - you just need to find the right one for you - check out the "treatment" board & the articles published by pdsa on treatment as a good starting point.

Sorry you are here at all - but, for those diagnosed with itp, it's a good place to be!! I became a "chronic itp-er" in December 2013 and my counts finally settled themselves at around 50 at the same time. I lead a normal life - I go on holiday, I see friends, I have nights out etc etc and sometimes forget I even have itp. You CAN live a great life in spite of itp - the biggest difference between me now & me at diagnosis is that now I know what is best for me - I have a great haematologist who listens to me & we make joint decisions about my care - when I need it. Make sure you get yourself good haemo who knows itp.

When I was first diagnosed people told me it gets easier & I was so stressed out all I could think was "yeah right"!! But it really does. The diagnosis, shock & coming to terms with itp was the hardest bit for me. Look after yourself & keep us posted

Joerg:

Actually, people with ITP have a greater risk of heart attacks and strokes than the general population. I know that seems unlikely, but new research is showing that ITP can be a thrombic disorder for various reasons. Here are a few articles about it.

To the 840 adults treated for ITP from Jan. 1, 1992 through Sept. 30, 2005, they matched 3,360 patients who did not have the disease. The outcome measures of the retrospective cohort analysis were thromboembolic events, including deep vein thrombosis, myocardial infarction, ischemic stroke, and pulmonary embolism. Overall, the researchers found, the rate of such events among the ITP patients without a known prior history of thromboembolism was 6.7%, compared with 5.7% for the non-ITP controls.

www.medpagetoday.com/MeetingCoverage/ASHHematology/12103

Patients with ITP refractory to primary therapy and those contemplating splenectomy should be made aware of both short- and longer-term complications. The risks of AbVTE (abdominal venous thromboembolism), VTE (venous thromboembolism, deep venous thrombosis and pulmonary embolus), and sepsis were increased in patients who underwent splenectomy, with cumulative incidences of 1.6%, 4.3%, and 11.1%, respectively. The increased risk of AbVTE, VTE, and sepsis must be weighed against the efficacy of splenectomy for long-term disease control.

bloodjournal.hematologylibrary.org/content/121/23/4782.abstract?ct&ct=edc0078f0223706ceb6453e28c53f19cb50ae40e71d3b442acf9a40c28f72c3622599d8d53bf161970897c9b7de283abb0295054cc9f469454f243cd2b2bc543

Researchers in Spain measured and tested the clotting potential of microparticles (very small bits cells) in the blood of people with ITP and found that the microparticles in these patients were more prone to form blood clots than the microparticles in the control population. This was also true of those ITP patients who had a splenectomy and were in remission. The clotting potential of microparticles may be helpful in preventing bleeding, but this condition may also make people with ITP more prone to heart attacks, strokes, and clots in their veins than might be expected.

www.pdsa.org/products-a-publications/e-news/2010-e-news/item/405-platelet-e-news-december-21-2010.html

Some people with a condition called immune thrombocytopenic purpura (ITP) have antiphospholipid antibodies. The primary problem in ITP is low platelets, the blood cells that aid clot formation and prevent excessive bleeding. Over time, some people with ITP develop APS. People with ITP and APS can have problems with excessive clotting and excessive bleeding.

www.patienteducationcenter.org/articles/antiphospholipid-antibody-syndrome/

I tell everyone same thing! Research your illness, the treatment options, the possible side effects short and long term. Write things down questions you may want to ask the doctor. Take someone with you to your appointment they may hear or help to clarify what your being told!

This web site is full of information on treatment options and possible side effects.



Most importantly take a deep breath! Getting stressed will only make things worse! it is easier said than done but stress can only make things worse!

What a wealth of knowledge! Thank you all for chiming in.

Hi Sandi,

This is something that I did not want to know

Thanks
Joerg

Joerg:

I'm sure you didn't - it would have been nice to get something positive health-wise from ITP! But, it's not right to have a false sense of security. I am often a Debbie Downer, and although it's not always a positive popular synopsis, I try to keep people as informed as possible.

Hello All,
Just an updated. My platelets are 108 today and I'm floating on cloud nine. Woo hoo!!

Excellent news

Good for you! That's a great feeling!

Hi Heavenlyshortie. Sorry to hear about your diagnosis. You and I seem to be on a similar journey as I was diagnosed just over two weeks ago now. I too am on Prednisolone (70mg) and had two days of IVIG infusion last week.

It's a challenging time, getting used to learning that there is something wrong with your body that may well have long term impact. I've found that by reading lots of past posts here has at least allowed me to be more informed about ITP. I've scoured the internet for any information I can find so I knew what questions I wanted to discuss with the doctor.

Congratulations on your latest count. I hope it keeps rising.

Hi Sandi,

No worries. I prefer to be good informed over being wrong informed.
It seems a bit unfair that ITP does not have any good side to it.
Maybe one day we'll find the positive effects of ITP.


Cheers,
Joerg

We have had discussions many times about the positives of having ITP, but they are all emotional changes (eg appreciating life) or life-style (eg eating better), nothing really physical.