[daveandgina]

hi i have registered with this site on behalf of my sister who has been diagnosed with lupus 4 years ago, She has now been told that it has started to effect her kidneys, the last 8 weeks her lupus has been getting worse and worse and she can now hardly move as her joints are so painfull and swollen, She is hardly able to walk and is unable to do anything for herself, also recently she has collapsed and ended up being admitted to hospital. she discharged herself after a few days because she was so fed up. Today a lump appeared on her forehead which as gradually grew over the day and is now about 2 inches across although she has not banged her head. does anyone have any idea what is going on and what could she expect now as she is so scared of not knowing and we are all really worried about her.

 

[Lily]

Hello and welcome,

I'm sorry to hear your sister is so unwell right now It's wonderful she has a caring sister to enquire into her illness and try and help :foryou:

Does she have a Rheumatologist who she sees regularly? Really we need one to follow our health and guide us through this minefield called Lupus. Things are constantly changing for us and our meds often have to be adjusted to cater to those times when disease starts revving up.

Do you know what medications your sister is currently on?

love
Lily

 

[Clare.T]

Welcome Dave and Gina

It sounds as if you are very seriously ill and in need of specialist healthcare and expert treatment. There are many medicines these days that can work wonders in getting the disease and symptoms under control. Unfortunately if lupus is left to run unchecked permanent and even life threatening damage can occur.
I have no idea what a swelling on the forehead might mean but if it was me I would be at ER. It's impossible to comment on the wisdom of discharging oneself from hospital in any particular situation but people are rarely kept in hospital these days without very good reason.

I hope you can get in touch with her doctor or get a referral to another one if the current one is no good, someone who will take charge of the case.

All the best
Clare