What's the longest you've been without infusing?

[syd]

Hello all,

I have CVID. I normally go to the hospital every 21 days to have an infusion. Due to work, the last 3 times it's been every 30 days. Now I've just moved to a different part of Spain and I haven't been able to access the healthcare system immediately. I have an appointment to see a specialist on the 22nd of October. By that time it will have been 8 weeks since my last treatment. My specialist said that I could last 6 weeks without any problems. I'm just really worried about what's going to happen. Anyone else had a similar experience?

Hope everyone is well or as well as you can be,

Syd

[john]

Hello Syd, nice to 'see' you again!
It's a bit worrying that you are not infusing regularly, your health comes first and although it's not that you're deliberately avoiding treatment, all the same...
In my own 20 odd years of Immunodeficiency and infusions I have never gone more than a day or so over the prescribed infusion times. I'm just very scared of going back to being sick again!!
However your specialist is saying 6 weeks instead of 3 won't hurt, and he had access to your levels and so presumably that's OK. Maybe the risk of infections in sunny Spain is much less than here in the UK and so they can be confident that you'll be fine. But it will have been 8 weeks till you see the new specialist and I don't expect you will re-start infusions on that day.
Seems to me that you might be persuaded to try sub-cut, which I now do, at home. This gives you complete control over timing and take away the need to involve work...there again I don't know if this is an option in Spain, although some people I do know who work abroad come back to UK every 3 months to pick up their supplies and take them out with them.
As it happens I'm having an IV session in clinic today and I will ask my Specialist Nurse for his opinion!!
Keep well
John

[mothergoose]

For reasons beyond my control, I was without treatment for 3 months last spring.
I used SQIG weekly, after missing about three treatments I started to get sick again.
I picked up an infection that I could not get rid of by taking antibiotic twice. I am now starting to feel like I might have got rid of this infection, and I have been back on SCIG for three months.
You should definitely look into SCIG, you pick the time easiest for you and you can be mobile.