my situation, new diagnosis, and platelet count ?

Hey! I recently got diagnosed wit ITP (October 9th is when my journey began...). My platelet count in the beginning was only 2,000. Now it is 96,000 and I am currently on 30 mg of steroids and we plan on trailing it down to 20 mg in a few days (per my hematologist). My platelet count has went from 4,000 to 202,000. Then back down to 53,000. Then up to my current 96,000. My doctor is calling my ITP steroid dependent. Has any other doctor said that to anyone else? If so what ended up happening? My doctor has mentioned spleenectomy and rituximab treatments I feel like just to make me think "what-ifs"... But either way I am not rushing into anything. He hopes the steroids will level my platelet count eventually. All these treatments freak me out because having children is important to me, and I am worried I wont be able to. What is your thoughts on that? My last question (for now)is what platelet level do your doctors say you need you need to stay at? Meaning, what is a safe level for you to be? I really appreciate everyones feedback.

My cousin had his friend reach out to be (she also has ITP). Her name is Melissa and I just wanted to say thank you for your letter! This is such a life change and I appreciate everyones advice and support.

Best, Brittany Hughes

www.ebmt.org/Contents/Resources/Library/Resourcesfornurses/Documents/ITP%20Handbook.PDF

This explains a lot.

Keep your spleen and don't rush into anything.
Anne x

Hi Brittany! I'm glad you found us, but sorry that you have ITP.

I've never actually heard of the phrase 'steroid dependent'. I guess he means that your counts won't stay up unless you are on steroids? Most ITP patients are 'treatment dependent' at first until they hit remission (most do, not all). You can't stay on steroids forever.

I think his taper is a bit too fast; that usually does cause a drop. Is 30 mg's the highest dose you've been on?

Take your time and research the other treatments. There is no rush. Most knowledgeable doctors consider 20k or 30k to be a safe count, depending on symptoms.

The good news is that you are responding in a positive way to the first line (read cheapest) treatment available for ITP.

A safe count is considered to be 50 and this will be the figure your Haematologist will be trying to achieve with the minimal amount of drugs. Many people can have no bleeding symptoms and live with counts much lower.

ITP is an acute condition if it resolves in 6 months (do not get too fixated on this time period) after a year the condition is considered chronic. Over 60 and your chances of the condition returning to normal diminish.

Splenectomy has become an unpopular option with Haematologists with specialist knowledge of ITP. Anyway you respond to steroids so it is wholly unnecessary.

Your question on having children is best answered by one of the well informed ladies who contribute to this forum.

Oh, I forgot about the children. There are some treatments that, while you are on them and for some time after, you shouldn't get pregnant. There are no treatments that would prohibit pregnancy permanently.

My hematologist said >30K is our goal. As long as I stay above that he will allow me to work without restrictions. I was diagnosed on October 8. I am also on prednisone, currently at 10mg daily. My doc is also cutting me back fast. Was on 60mg for a week, 30mg for a week. Going to stay at 10 for 3 weeks. I was down to 5K on the 8th, last week I was up to 119K.

I'm curious about your statement...allow you to work. Even when I was at 20, not working or any type of restrictions were never mentioned. Do you mind me asking if you have a dangerous job?

When I was first diagnosed my GP wouldn't let me back to work with a count less than 50, front line NHS nurse in a very stressful, acute high dependency environment that was revised to 30, and now down to 10 since I changed to a gentler job.

D Mann please not taper too quickly, withdrawal symptoms are dire.

I work in an R&D lab, some may consider it dangerous. Not more so than driving to work in my opinion, but my Hemo said that below 30 he did not want me working. Now that was the week after my diagnosis, that may change over time. I am up and down ladders, lifting heavy objects, run a crane, and lots of hand tools all day.

I started at 60 mg steroids. then he tapered to 40, now im on 30.
He said he dropped it quickly... I agree it may be to quick.

Thanks for letting me know about the safe count. I wasn't sure about that. I am no longer really symptomatic (knock on wood) and was wondering if he would be happy if I would just stay at a certain number.

thanks so much for your advice!