New to ITP

Hi, I am 43 Years old and over Easter picked up the flu from my 2 and a half year old. After weeks of not being able to shake off a cough, I noticed my legs had to started to bruise easily. I went to my GP who prescribed me anti-biotics and Pred to help my dry cough. I mentioned about the bruises and he said I might as well have a blood test too. The results came back at 50 and it was refered to a pathologist for his view. He said I was suffering from thrombocytopenia. Next I had a CBC and the count was 86 - the GP said that's still low, but by then I had come off from 20mg of Pred a day for a week. Next test was 40, then a week later 33. I am now back on 40mg of Pred a day, for a week and take my next CBC tomorrow. The GP is adament, I have a virus, but a full virus check in a blood test has come up with everything as negative. He said we will see the results of the next test and maybe send you for a Bone Marrow Aspiration - is that normally the course to take?

Until then, I have been very fit, don't drink or smoke and never had any malaise or illness.

Cheers

I'm not sure how your medical insurance works in NZ - can you ask to see a hematologist?

I think I am covered. I think I am being misdiagnosed as after four days on 40mg of Pred, I am up from 33 to 118. In fact the Pred is worse than I thought, bit no hardship there. The Haemo was talking about Cold Agglutinens, but my Blood Counts show nothing to indicate those. Everything else is normal - no main virus', but I have had a poor diet, more through idleness than anything else for the past 9 months and a mega amount of stress - all self brought on - so perhpas being 'run down' has contributed to it. Anybody else have views on this?

The stress is tough to avoid during uncertainty and more so under extreme uncertainty. The main issue, imo, is that ITP can only be identified via elimination of all the other identifiable causes of low platlets. Until I was identified with ITP in 2000 my only memory of platlets with High School biology. ITP is also very, very rare so I doubt MD's will embrace it to quickly. The marrow aspiration is one test in the process of elimination. Don't freak on this and I hope the MD at least mentioned why the marrow test. It's because Leukemia can also cause the bruising and platlets are created in our marrow. I didn't have a problem with that actual test although it sounds scary. We all have a "soft" spot in our hip which is the easiest place to insert a syringe to extract bone marrow for testing. Mine was done right in the hospital bed. Laid on my side, they numbed the area and pushed really hard. Some experience pain or simple discomfort, mine was pretty uneventful. The elimination of that as a cause is just another step before admitting it's ITP (unknown blood disorder of the auto immune system). They should also quiz you about all the herbs and/or health foods you might consume as they can lower platlets. Certain drugs (aspirin, alcohol and others can decrease platlets) thou I don't know their amount of influence.

Your steroid Rx was very short compared to many of us. In the hospital I was on 1000mg and tapered off over months. The theory is to reset our immune system by turning it way down and allow it to "reset" during the taper (didn't work for me). BTW, I've relapsed after 10y and I'm now on 100mg tapering over 4 months. I wouldn't be surprised if you went onto an aggressive protocol if ITP becomes the Diagnosis.

"Normal" platelet counts are 200,000 - 400,000 (typically expressed simply as 200 -400). Less than 100 is reason for concern, < 30 is reason for significant concern (my first Dx was 24k and landed at 0). Many people here are living quite well (other than anxiety and frustration) at > 50.

Another personal factor is I had no idea of what my normal count was - who pays attention unless there's a specific reason to.

Visit often, ask questions frequently as knowledge is power but not necessarily comfort. NO question is to foolish and ALL of us have been there.

Hang onto your faith - Blessings

Welcome Fraz. It seems like you have the "typical" story of discovering your ITP. Being run down didn't trigger ITP, but many of us suffer from that symptom. And many say that stress is a factor in their platelet count, but I'm not sure about that. No one has the same symptoms/problems with this disorder and there is no cure for it. ITP in itself is not life threatening. The BMA is part of the process of elimination, if your doc suggests it then get it done. In the mean time we gotta keep living life as best as we can. We all have good and bad days. I'm just now learning to let the good days overpower the bad! Keep us updated.

Viruses can trigger ITP, but gettig rid of the virus may not caure the ITP. You may never know what triggered it...could be a combination of things.

The fact that your counts went up after 40 mg's of Prednisone does not confirm or rule out ITP. Many people with ITP respond well to steroids.