Long term prednisone use

[hiltonhead]

I have been on various doses of prednisone for one year now to help control my ITP. My hematologist has tried Promacta and prednisone. When my prednisone dosage was down to 5 mg with 75 mg of Promacta my platelet counts tanked. Presently I am on NPlate and 10 mg of prednisone. Has anyone who has taken long term prednisone have it start to effect other organs in the body. I am now on high blood pressure medication and cholesterol medication and now my thyroid numbers are being effected along with my creatin numbers. I constantly have hot flashes where I profusely sweat when I do simple task. I am interested in your experiences with long term prednisone use. It is my hope that my hematologist has finally found the right dosage of NPlate and when I am down to 5 mg of Prednisone my numbers won’t tank like they have done with every other medication combo I have taken.

[swheels]

Hi I’ve never known the use of combination medication in all the time I’ve had ITP, I’m 51 and was diagnosed at the age of 2. I had remission from the age of 15-27 but relapsed. My first relapse I was taking steroids for 9 months, the consultant took me of them then as they are bad for you. I tried IVIG which worked short time. I stabilised at around 20-40 and on occasion the platelets would go up over 50 but I don’t know how. Covid has messed up the balance, steroids aren’t working so I’m on Nplate only, it’s far better for me as regards to side effects, my hair is thinner (not so good) but I haven’t gained two stone in weight, got heart burn or throwing up after meals. Nplate on its own is working it’s just finding the right dose to balance the platelets. Long term use of steroids isn’t good, I’m told they strip calcium out of your bones not sure if that’s true. Take vitamin and calcium supplements they might help

[magone7]

Hi. I've been on prednisolone since 2005. This has been my only medicine for ITP. I live in Latvia. And hematologysts don't offer other options for me. Side effects??? Some overweight, problems with bones, eyes, memory.

[griggsboy]

Hi, I've had ITP since 2004 and been on nearly every medication available including a splenectomy but by far the worst medication is prednisolone.I was on a fluctuating dose varying from 65mg to 10mg over the course of about 10 years and it caused steroid induced osteoporosis, so you must have a regular bone density test and make sure your haematologist starts you on medication to avoid osteoporosis. Unfortunately even after all this medication my platelets don't get any higher than single figures and I just go in to hospital twice a week for a bag of IV platelets.

Good luck and make sure you look after your bones. Gordon