Treatments

[Shoni89]

What treatments have you used and were they effective?

Our hemo says there are two options for my son aged 2. Steriods or IVIG. Steroids failed us and we are currently laying in the best praying IVIG works. I asked my hemo what happens if this doesnt work and she said "then we are going to be extremely worried". Surely there is more treatments out there?

[Ricksp]

Hi. I've had ITP since I was 6 years old, I am now 29. However my platelet account does return to normal after a few weeks/months. I have had relapses many of times. I'm not a fan of steroids and have been given them every time I relapse, 95% of the time with no effect. IVIG worked for me once and hasn't worked since I was 13/14. Now there are quite a few medicines to secure a good platelet level and live a pretty normal life. I am now given Eltrombopag, which has an excellent effect. You can just about life a normal life with this medicine. IVIG is not the end, don't worry.

[Yoyooyeoh]

Hi I’m ITP steroid refractory, and a severe one probably my immune system is too strong (in a bad way). Currently I’m on prednisone 10mg, azathioprine 150mg, CellCept 500mg and eltrombopag 25mg. My one digit platelet count finally make a move from 1k to 20k and slowly increasing. The drugs make me extremely fatigue. I took eltrombopag and CellCept early in the morning then nap to my regular wake up hour. Then after meal I would take aza and Pred both makes me super sleepy but I’m able to cope with it. I hope I could reduce the drugs and switch to Chinese medicine after my platelet count is above 50k. Your son will recover soon I believe, children ITP is mostly acute so have faith!

[sharroN42 in reply to Yoyooyeoh]

Can you tell me what Chinese medications are good for ITP?

I am finding papaya leaf juice/extract effective.

Frankie

[Yoyooyeoh in reply to sharroN42]

papaya leaf extract does not help in my case I have tried, glad that it does help increase your platelet count though! I’m going through some research papers, there are a few Chinese herbs improve ITP conditions, eg Radix Astragali Preparata (Radix Astragali seu Hedysari Praeparatae), Salviae miltiorrhizae (Radix Codonopsis pilosulae), Poria (Poria), Largehead Atractylodes Rhizome (Rhizoma Atractylodis Macrocephalae), Donkey-hide Gelatin (Colla Corii Asini) and Radix Rubiae (Radix Rubiae) etc, but I have yet to try and consult the professionals. I wanted to try after my platelet count raises above 50k so I have “capital” to try alternative, won’t want it to become single digit again 😂

[sharroN42 in reply to Yoyooyeoh]

Thank you, Yoyooyeoh,

Would these be available from a Chinese herbalist?

Frankie

[Yoyooyeoh in reply to sharroN42]

Yes I got them from herbalist here. Now I’m also trying Chinese medicine. But normally Chinese medicine will take longer time (at least 3 months) to see the results

[sharroN42 in reply to Yoyooyeoh]

Thanks. I have a Chinese herbalist in town and will check him/her out.

[sharroN42]

I am taking papaya leaf juice and find it has increased my platelet count. I live on Vancouver Island (not Vancouver) and can only get it through Amazon.

Frankie

[sharroN42]

Beautiful child. My thoughts and best wishes are with you.

[lillaa]

I assume those are his options because they still think he has Acute ITP? I've had mine for 13 years (3 times it seemed acute, followed by long remissions, but for the last year i cant seem to reach a real remission again)..

I've taken steroids (i would NOT recommend them on my worst enemy, i refuse to take them ever again, i'd rather bleed), IVIg (works wonderful, the 2-day infusion gave me 3 months of safe counts) and now I'm on Imuran (so far so good, no side effects, hopefully it'll work).

ITP isn't really as scary as it sounds. A good thing to remember is that we rarely bleed due to huge young platelets that our bone marrow makes to catch up, so one of those basically works like 2-3 regular ones.

Good luck, I hope whatever you choose for your son works and he can go back to climbing the trees and running around 💕

[Shoni89 in reply to lillaa]

He is classed as chronic as we are now at about a year since diagnosed. His platelets tend to fall below 10 and he started having nose bleeds and vomited blood. We have tried the IVIG and his platelets almost a week ago (monday) after treatment was 342, today (312) but im glad he is at a safe level and hope it stays level for a while.

They make the treatment sound scary 😕..5 failed canulas and a 6th successfully. He is traumatized feom needles now

[sharroN42]

Poor baby. It must be extremely scary. My thoughts and best wishes are with him and his family.

[Shoni89 in reply to sharroN42]

Thank you. The IVIG has raised his platelets although they are dropping very slowly they are still up for now😊