So I am going on 1 year with ITP (June 14th). I have been through two Hematologists and I have already failed the steroids (prednisone and dexamethasone), IVIG, and Rituxan (keeps yo-yoing) . I have recently relocated from CT back to NJ. I am down at the shore near Atlantic City and was hoping that someone could recommend any doctors down here. It is almost exactly 2 months since my last hema. appt and my platelets were at 119 which is amazing, so I've pretty much just left it in Gods hands. But now that I am finally settled, it's time to get back in the office and see where I am. I've been feeling very weak lately and my bruising and bleeding has been increasing so I'm thinking we are declining again.
Here are how my counts have been (June 2018-March 2019):
1st diagnosed (Dexa/Prednisone): 25-27-29-207-43-99-181-148-148-61
IVIG (Still on Pred.):160-165-166-148-122-115-78-88
The last course of treatment that my hema. and me were talking about was either starting Promacta or Nplate once I fall close to 50 again. Does any one have any advise on either or maybe a different solution?
Sorry this is a lot in one post... Thank you!!!!!!
Kryschex, looks like you are doing very well. I don't know what doses you have taken of the drugs you mention but it looks like steroids/dex is your long suit. Just off hand, if you end up on Promacta you may find yourself on the lowest doses, eg 12.5 - 25mg.
A few folks around here have counts that fall into 40-60 range and just stay there. As long as there is no bleeding, they don't treat. This can be called a 'partial remission'. Normally, a count below 30 is where most doctors would begin treatment again.
On bruising/bleeding. You are your best judge as to how low counts are for symptoms to appear. Everyone is different in that department.
Hi Hal9000, Thank you for responding. I couldn't take the symptoms with the steroids. I gained an immense amount of weight that I still can't get to leave and the pain in my bones was unbearable. I'm enjoying the freedom of feeling normal again not having to be on anything. Yes my doctor didn't let me fall under 50. I'm just hoping that the Rituxan treatment holds on for a little while longer.
Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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I sympathise with over the steroids. Truly awful drugs.
Personally I agree you should start looking for a haemo. Over here in the UK it is rare to treat a count above 30 unless the patient is symptomatic.
On the rare occasions my count gets to 100 I drop my Promacta dose slightly. I prefer to hold my count as near to 50 as possible. If I could hold a count above 30 without medication I would be delighted.
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