ITP Tamiflu experiment (Oseltemivir)

[PennyHeron]

Has any member tried Tamiflu (Oseltemivir) for ITP.

My haematologist has tried everything and my platelets still under 10. In desperation she is trying me on Tamiflu and I wonder if anyone has had any success.

Thanks

Penny

[rjsmyth]

When you say everything can you be more specific? ITP is not a virus so Tamiflu seems a strange choice.

Normal medications would be to do one of three things:

1. Suppress your immune system

Prednisolone

Dexamethasone

Azathioprine

MMF

Dapsone (rarely)

Rituximab

Cyclosporine (very rarely)

2. Increase pre cursors to platelets in the bone marrow i.e. overwhelm your immune system with so many platelets it cannot keep up with their destruction resulting in an adequate platelet count.

NPlate (Romiplostin)

Eltrombopag

3. IVIG infusion (very temporary but often effective in raising counts quickly)

It might be good to try to seek out a Haematologist who specialises in ITP

[PennyHeron in reply to rjsmyth]

Thanks for replying. Tried all of the above. Am also on 4 day course of Dexa and take MMF as well. IVG is reserved for emergencies. Ie operative treatment and a bleed.

At wits end really.

[rjsmyth in reply to PennyHeron]

Your saying you have tried NPlate?

[PennyHeron in reply to rjsmyth]

Yes. X 2 two years apart. Very limited response.

[rjsmyth]

I was equally refractory to all treatments and spent a year in single figures. Interestingly Eltrombopag did not work for me but NPlate does. There was a trial here in the UK for Fostomatinab the results of which I think were inconclusive but I believe that works within the spleen. Both NPlate and Eltrombopag can take several weeks to start to work and I have noticed on this site that some people have had this treatment stopped rather prematurely probably because of the costs involved. People with ITP seem to fall into two categories - bleeders who are in serious trouble when their count is low and - non bleeders (like me) who just get heavy bruising, fatigue and blood blisters in their mouths when their count goes low but stay safe. I have had the response to NPlate tail off quite suddenly maybe because of my system fighting some virus only to recover my count back into the safe zone. It maybe worth you pursuing NPlate again?

Good luck 🤞

[PennyHeron]

I will talk to my doctor. I thought maybe dual therapy ie MMF and Nplate might work. Like you I can cope with platelets under 10 but it freaks everyone else out. I get threatened with a brain bleed by my haematologist if I don’t take steroids which I hate.

Fostomatinab is not funded in NZ. I will carry on with my 10 day course of Tamiflu even I know it won’t work and then suggest Nplate again along with continuing my MMF.

Thanks for your help