Help!! Any knowledge or advice really appreciated.

[Daisygold12]

Hi I wondered if anyone could give some advice? My sister in law in Egypt has lupus and is really ill at the moment her toes on one foot are totally black and have needed amputating for about a month now, but the Dr's won't due to her having lupus and today she has found another mark starting higher up the leg. Is it standard practice not to do surgery because of the Lupus? Obviously we know amputation is a big thing but the toes are totally dead and we worry about blood poisoning and that type of thing. Please, please any knowledge or advice would be really appreciated. We are all very scared that things could get a whole lot worse if something is not done.

[whisperit]

Hello Daisygold12

That sounds like a very difficult situation indeed. It would be really irresponsible of me to pretend I can second-guess the clinicians who are taking care of your sister, so I won't try to argue one way of another in her specific case. But in general, having a lupus diagnosis is obviously not an absolute contraindication for all kinds of surgery.

Here's the general advice that the Lupus Foundation of America gives resources.lupus.org/entry/p...

Maybe it would help if you were able to get a clear understanding of how your sister's clinicians intend to manage her case. Are they planning amputation at all? If so, when? If not, how do they propose to manage the situation? What are the milestones and/or key stages in this plan in terms of clinical markers or treatment goals?

I do hope things resolve soon. In the meantime, do keep in touch here if you find it at all helpful x

[Daisygold12 in reply to whisperit]

Hello Whisperit thank u so much for your reply. We feel so helpless as we are here in the uk and she is in Egypt. I feel like no one really has a clear plan, they were going to amputate now there not, then they are. She is having possibly a agiagram (not sure on spelling) this week and then we don't know much more after that, but also a,new mark has appeared higher up her leg and it's the same as how the toes were before going completely black. Do u know of anyway of preventing this mark rotting too? Thanks again for your reply xx

[whisperit in reply to Daisygold12]

Presumably it's an angiogram to assess the sufficiency of the blood supply and so get a really good understanding of the options re amputation and/or treatment? That of course is only a guess, and it could be something else entirely. At this distance, it's impossible to know. It must be desperately worrying to feel so cut off from what is going on., but ultimately, the doctors with her will be in a far better postion to treat her correctly than a random guy on the internet like me ! x

[Daisygold12 in reply to whisperit]

Yh it is a angiogram and yes it seems like there doing it to assess the situation further and go from there, it's just so worrying that another mark has appeared. It also seems like she has been passed about alot as none of them seem to clearly know wot to do,there does not seem to be a specialist consultant!!

[Rainbowe]

Please get the toes off sepsis is a killer hydroxychloin tablets could help

[Daisygold12 in reply to Rainbowe]

That's wot I was thinking, but they say they can't amputate due to the Lupus? Thanks for your message 😊

[Chanpreet_Walia LUPUS UK]

Hi Daisygold12,

I could not find any information about lupus and amputation in The Lupus Encyclopedia. We recently published a blog article on lupus and feet which I hope will provide you with some extra information lupusuk.org.uk/caring-for-y...