Hello All, I am completely new to this website, as I have been recently diagnosed with ITP. I am hoping by posting on here, I can help others, as well as get answers for some of my questions.
I was diagnosed with ITP after discovering a rash on my forearm on the night we arrived in Turkey. I didn't think much of it, so I went to bed, looking forward to a week of lounging around by the pool as you do! The next day, I noticed that the rash had spread, and it was now all over my feet and legs. I wasn't convinced at first that I needed urgent medical attention, but I slowly convinced myself to go and see the on site doctor. That is where the saga starts. I was taken immediately to the local hospital where I was told I would have a blood test, and I would be back in an hour. So we headed over to the hospital with nothing more than the clothes on our backs, and about £10. I was kept at that hospital over night (I wasn't happy at this point), but then the doctors came in the following morning, and told me I was being transferred to the bigger hospital over an hour away for 'Critical Care'. I spent 4 days in hospital in all, and after trying several translators, and going through the holiday company, we found out that my platelet levels were at below 12,000. After 4 days on treatment (I don't know what i received in hospital as it was all in Turkish), i was released with a platelet level of 48,000.
3 weeks have passed since then, and I am currently on 100mg Prednisolone daily, and my platelet levels last week were 242,000. I am due another blood test tomorrow.
My only concern is that the steroids now appear to be doing more harm than good. I am putting on no end of weight, I can go days without eating anything, and then spending a day raiding the fridge, and my knees, hips and back are absolutely horrendous to walk on. And not to mention the band of painful spots I have across my chest! My main concern is that these side effects are going to get worse. I haven't heard of anyone else who is on 100mg Prednisolone with ITP, and at the moment, my Haematologist is planning on dropping it by 10mg every 2 weeks.
Other than the above, I am a fit, healthy 21 year old with no history of any medical issues. That's what has gotten me quite nervous about ITP!
I am worried that the steroids are almost buffering the platelet levels, and as soon as the dose is lowered, my platelet levels will drop as well. Is that possible?