Prednisone no improvement, what’s next?

[BAT28]

I was recently put on Prednisone, starting at 60mg. Counts were at 20 and pretty much stayed at 20 the entire time. Has anyone else had no improvement in counts with prednisone? What did your doctor do for next steps?

[Dahle2424]

The Doctor should be trying other options. I tried Prednisone, Promacta, Nplate = Nothing

On the short term I get IVIG transfusions before any operations. I have had 4 Kidney stone

extractions over the last 30 years and on 3/6/2020 open heart - 3way by pass surgery. I went

in at 3K - operated with 59K and here I am writing about it. I am currently at 8k and stopped

going back to any hematologist. I have been to 4 different Doctors over the years and not 1 can tell me what causes it or how to treat it. My Regular doctor doesn't know what to make of it, and keeps telling me to follow up w/ a Hematologist. 8K IS MY NORMAL. Enough Said.

Do I bleed longer than usual - yes. Does it Stop - yes, I am 61, ride a motorcycle, snow ski, work with power tools etc. Just be careful. Ask your doctor if this is "your" normal?

P.S. - Although I do bruise easier than most - It goes away within days and multiple bone

marrow extractions revealed nothing .

Good luck from New York

[Notorious_IVIG]

Hey there, I was also started on Prednisone at the start of my journey with ITP. It did absolutely nothing for my numbers except to cause my heart to beat outta control. Bursts of energy but not in a good way.. I couldn’t sit still..Shortness of breath, I remember feeling on edge all the time and it messed up my sleep amongst other crazy symptoms as well! I was exhausted being on Prednisone. Next step for me was “Revolade” also known as “Eltrombopag”. I’ve been on it for almost 5 years now. It works to keep my numbers at a relatively “normal” count. I hover over 60-110 on average. My doctors are happy with anything over 50. I hope this helps my fellow ITP warrior. Keep your head and chin up. You’re not alone. Please reach out if you ever need to chat!Sending you a big hug and many platelets from Guelph, Ontario. Canada 🇨🇦

Alia

[BAT28 in reply to Notorious_IVIG]

Thank you for your reply. I've heard good things about Eltrombopag, but unfortunately it is very difficult to get approval for it from Health Canada or our insurance companies. I see you are in Canada, how were you able to get approved?

Good to know it's working for you, stay healthy and safe!!!

Kindest regards,

Barry

[Notorious_IVIG in reply to BAT28]

Hey Barry, my Revolade is partly covered by our insurance through my husbands’s benefit package through his work. I believe it’s at 60% coverage. The other 40% is covered by the Inreach support program, sponsored by Novartis. It may be helpful to call Novartis’s Inreach program at 1-888-475-4255 to inquire about how you can also enroll. I really can’t remember how it all came about.. I believe my doctor back then , (5+ years ago ) required I get on Revolade and I want to say..the Hospital’s Inreach program may have put me through Novartis? I really can’t remember. I’ve moved on to my current Hemotoligist and treatment hasn’t changed. I also remember being told that “Trillium” was another option I was to look into in case my husband’s insurance benefits ever changed or if he leaves his job and I still need coverage. In all cases, it will have to start with your doctor. I hope this helps in any way to maybe start exploring other avenues to get to Revolade if and when your doctor asks you to do so . All the best, Alia

[Anthonyh7]

Hello BAT28,

The following video will give you plenty of information about what treatments are available for ITP and how it is determined which treatments to use and in what order.

The problem with ITP is that we all respond differently to the many treatments and obviously some of us don't respond at all to some of them. So it is difficult to be specific as it is a matter of each case on its' merits. But the video goes through the general order that specialists are recommended to follow when considering what treatment to issue and when.

I have been living with ITP for 15 years and have had Prednisolone, Azathioprine, Rituximab and Mychopgenolate Mofetil.

If you wish to have a look at my ITP blog it will give you an idea of some of the issues that I have had and a bit about the treatments that I have been through.

So...

1. Link to the video entitled The New ITP Guidelines by Professor Adrian Newland CBE - youtube.com/channel/UCRkHWf...

2. Link to my ITP blog - myownpurplepatch.simplesite...

3. Link to details of all the treatments - itpsupport.org.uk/index.php...

4. Link to details about treating ITP - pdsa.org/treating-itp.html

Hope all this helps

Best wishes

Anthony

[opera1]

As for me prednisone is a temporary fix. I am usually put on 80 mg. Prednisone has caused me to get insomnia and diabetes. Read about the side effects. ultimately, I get four infusions of Rituxan. My platelets were zero last year. The Rituxan keeps my platelets up for two two and a half years and then I go through the same routine.