EBV reactivation post SCT

Hi , sorry to hear this news.

I have no experience of EBV but there are a number who have so let’s look for them to pick up on your post.

((hugs))

Hi

I had EBV about 4 months after my allo which was treated with rituximab. 

‘I had been ill with a really bad throat for about 3 weeks before the hospital finally diagnosed EBV. After the first dose the symptoms had disappeared altogether the next day and I didn’t have any sickness or tiredness during the 4 doses. 

I did lose my hair after the retuximab ( about 5-6 weeks after the first dose).

my immune system took a battering from the treatment but I was at a very different stage post SCT than your husband.

Compared to the other chemos and treatments the retuximab was easy. Have had no reoccurrence of EBV since ( 5 1/2 years).

Hope  the treatment goes well.

That's so helpful, thanks Paul. The list of side effects looks long but his team are being vague about likelihood. Guess we'll see! He usually works full time  I study full time and we have 2 primary school age boys so juggling constantly. I'll let you know how it goes. 

Hi, 

yes, daughter’s EBV level began to rise (no symptoms) and her team treated it well before it got to any problem level, with Rituximab, she had ‘pre-med’ as standard in case of any reaction, but had no appreciable problems!

hugs xxx

Thanks moomy - i think you were around last time I was here! Musician daughter? Hope she's doing well x

Yes, thank you, she’s doing ok, with the occasional blip. She’s needed immunoglobulin this last winter as her immune level was virtually non existent, and still has to remember to pace herself. 

Hugs xxx