Hi,
I just thought I'd write down a bit what's been going on with me, as I know what a lovely supportive bunch you are and just need a bit of a hug!
I've had a horrible nasty ol' flare up of the lupus and been in hospital best part of the last two weeks, came out yesterday. I get this peritonitis, inflammation of bowel, bladder, kidney lining you name it and it's agony. I had the 3 pulses of the methyl prednisilone iv and am now waiting for an appt tommies to get the IVIG to try to put the lupus into some kind of remission. This is my second big flare in a few months - last one in March was 10 days in tommies and 3 pulses later . . . ..
What's really worrying me is that I'm also losing the 'feeling' in my bladder with all this scary pain. And this attack came out of the blue - I was fine one minute in a shop, the very next minute in the most worst pain of my life (again!) and could not stand up for the pain. The hospital say it's peritonits - but inflammatory rather than infection. Once I had it, they took out my appendix by mistake. At least I know what it is now but it's bit scary. It sort of makes me bit nervous thinking about it, especially the no warning of it coming on aspect. Usually I get some warning but not this time!
Has anyone had IVIG? Please tell me about it. I'm terrified of it as I had it once before and had a nasty reaction but the docs say it's pretty much my only option as I already had an immune deficieny so I'm not allowed cyclophoshamide or rituximab.
Cathy x
I just thought I'd write down a bit what's been going on with me, as I know what a lovely supportive bunch you are and just need a bit of a hug!
I've had a horrible nasty ol' flare up of the lupus and been in hospital best part of the last two weeks, came out yesterday. I get this peritonitis, inflammation of bowel, bladder, kidney lining you name it and it's agony. I had the 3 pulses of the methyl prednisilone iv and am now waiting for an appt tommies to get the IVIG to try to put the lupus into some kind of remission. This is my second big flare in a few months - last one in March was 10 days in tommies and 3 pulses later . . . ..
What's really worrying me is that I'm also losing the 'feeling' in my bladder with all this scary pain. And this attack came out of the blue - I was fine one minute in a shop, the very next minute in the most worst pain of my life (again!) and could not stand up for the pain. The hospital say it's peritonits - but inflammatory rather than infection. Once I had it, they took out my appendix by mistake. At least I know what it is now but it's bit scary. It sort of makes me bit nervous thinking about it, especially the no warning of it coming on aspect. Usually I get some warning but not this time!
Has anyone had IVIG? Please tell me about it. I'm terrified of it as I had it once before and had a nasty reaction but the docs say it's pretty much my only option as I already had an immune deficieny so I'm not allowed cyclophoshamide or rituximab.
Cathy x