Is eleven weeks too early to diagnose chronic ITP?

[Nickypg]

Hello

I first went to my doctor with a rash in January and found myself in a hospital oncology unit the next day for an appointment with a consultant. My platelet count was 20. No treatment was given and from that day to this I have still had no treatment and have developed a 'watch and wait' strategy with my consultant. My platelet count has been :20, 23, 53, 90, 101, 121, 78 ( heavy cold ), 99. I think that this is all good news but last week my consultant said that the platelet count hasn't gone up fast enough so we're definately looking at a diagnosis of chronic ITP. ( She has maintained since day 1 that this is a lifelong condition for me ). I had whooping cough for 5 months between July and November last year, as did my husband and since then, neither of us has felt well. I know that my platelets were normal until then because my consultant has looked back at previous blood results. I'm concerned that I have become a 'lifer' when I have read that viruses can cause bouts of acute ITP that clear naturally. My consultant believes this is only really the case in children and seems to be waiting for my platelets to drop again to confirm her suspicions. Anyone that has experienced similar and could offer me any advice, I would be very grateful. I know that my issues are not extreme at present but, of course, i'm still concerned.

Many thanks.

[rjsmyth]

With your count swinging about at mostly (above 50) safe levels I would definitely be watching and waiting. Normally most Haematologists will not give a diagnosis of chronic ITP until you have had consistantly low counts for at least six months and some would say twelve months.

To put this into perpective I would be delighted to have your counts with no medication as I am sure would several others on this forum.

[Nickypg]

Thanks for the reply.

I agree, I am very lucky at the mo.

I thought 11 weeks seemed a bit early to be conclusive.

[Hidden]

Whether it's called acute or chronic ITP doesn't really matter. Most chronic ITPers come to a state of remission eventually and often spontaneously. And many, many cases don't ever need treatment. The people who post on forums such as this tend to be the few difficult cases. The others don't have the need of support for long. So don't be downhearted by being labelled chronic, it means little.

[Nickypg]

Thank you. That's very much appreciated.

[scaryteacher]

I've had it for 17 years now (got it when pregnant) and I'd like the higher end of your counts. Mine have been between 60-80 for 15 years and now drop to 20 often. I don't have any treatment for this, and apart from avoiding contact sports, it doesn't affect me, apart from being tired.

It seems scary, but I only remember I have ITP when my rash gets worse; I get a cold/virus, or I am flaked out or bruise a lot. the chronic label as Camden Girl says doesn't mean that much; some people have asthma or diabetes; ours is ITP.

[Nickypg]

Thanks, scaryteacher.

I know that i'm lucky at the moment and I really appreciate that but the diagnosis is still a worrying one and i'm very grateful to you for replying and helping me put it into perspective. I suppose the 'chronic' label just makes it feel like a long road ahead but you're so right - many families live with a condition and just have to get on with it.

Thanks again.

[mags4743]

In my case I have both - ITP, Type 1 AND TYPE 2 DIABETES. I do wonder sometimes what else is going to be "thrown at me" but as everyone says try not to worry about it. I am now not on any medication for ITP. I have, in the past, had prednisolone, cyclosporine and mycophenolate and I felt terrible on these meds. I made the decision to come off these toxic tablets and my platelets are slowly rising and at the last count were 61.... so don't worry.

[Nickypg]

Thanks, mags4743

I'm sitting watching the unfolding events in Boston which obviously puts things into perspective.

You sound as if you've had a lot to deal with. I'm glad your platelets are rising now - long may it continue.

[Carolpatricia57]

Ok, now I definitely feel I'm being over prescribed steroids. My consultant puts me on prednisolone if my count goes below 50/60 and has never mentioned a watch and wait policy. The only symptoms I've ever had is some bruising whereas the steroids make me feel awful.