Will my platelet levels fall again?

[regsmum]

I was diagnosed with ITP in February this year (platelet count 1, petechia, nosebleeds, bloodblisters) and was treated with prednisolone. All has gone well apart from a slight blip during tapering, and I tapered off 6 weeks ago. My count was up to 155 before stopping and 122 at the last count last week. What are the chances that I am now "normal" and ITP won't return?

[AnthonyHeard Administrator ITP Support Association]

Hello regsmum. It is very difficult to tell with ITP whether or not your system has now returned to what we would consider normal. I had ITP diagnosed in 2006 with a platelet count of 4 and was put on steroids straight away. My platelets went up and reached 180 so I was then gradually taken off the steroids. My platelets then gradually fell back until they went down to 15 so I was put back on the steroids again. This happened 4 times over a 4 year period. But it is important to say that with ITP everybody reacts differently to the treatments on offer. Some people do respond well to steroids and find that their system corrects itself without further treatment of any kind. Some people like me find that steroids do not work for them and then have to try other treatments. For me I had Rituximab treatment in 2010 and it has given me remission ever since then thank goodness. With ITP once you have had it the condition can never be said to be cured because there is no cure as such. Each of the treatments on offer can however ultimately mean that the ITP sufferer can get the condition under control and continue with life. Please do have a look at the ITP Support Assoc website if you have not done so already as it has plenty of information including on all the various treatments... itpsupport.org.uk

Hope all this helps and best wishes

[regsmum in reply to AnthonyHeard]

thank you for your response, wait and see then I suppose?

[AnthonyHeard Administrator ITP Support Association]

Yes wait and see is about the size of it. The thing with ITP is that nothing is really definite and it is just a matter of getting regular checks by blood test and also knowing the signs to look out for to get an early warning that ITP might be coming back. Tiredness, fatigue and irritability are a tell tale sign that platelet counts might be falling. Bruising, bleeding in the nose, gums, urine and stools might occur when the platelet count falls below 20 but this is not always the same for all ITP sufferers.

The best thing to do is talk your own individual situation through with your specialist and agree an acceptable plan for when to get check ups. In my case when I was first diagnosed I was having weekly blood tests until my platelets started to settle. Then I would have a monthly blood test once the steroids started to push my platelet levels up. Now since I have been in remission since August 2010 I only get a blood test and check up once very six months. But all cases have be treated on an individual basis depending on age, occupation, other medical history and conditions etc.

[NickyD]

Hi Regsmum. If the steroids have worked for you that is wonderful. But as Anthony says you are never free of ITP. I was in remission for two and a half years and then it came back with a platelet count of zero. NickyD