Sticky Blood-Hughes Syndrome Support


First off, I hope everyone had a Happy and Safe Christmas and New Year! Although most of you are living with real tribulations, I hope it was a time for some rest and time with your families.

I went on a 10 day cruise with my mother and sister from Brisbane Aust. to Papua New Guinea. The last 2 days I was completely exhausted and had painful legs. I have arthritis in several joints and did a lot of walking as it was a large ship. The day after my arrival home, my husband got the doctor out and the doctor rang an ambulance. I was in hospital for one day on iv antibiotics and told to go home, elevate my legs and continue on oral antibiotics. Our terrible public health system here, they just treat the symptoms and pass the problem of causes etc back onto your own doctor. I had suffered no bites, scratches, wounds etc that could have caused the cellulitis. They suggested my GP doctor order ultrasounds of my legs, in case of blood clots.

I know none of you are medical practitioners, but lets face it, most of you know more about this condition that many doctors! In your humble opinions, do you think it was caused by APS? My earliest available appt. with my own doctor is in another 24 hours My feet and lower legs are very red, extremely swollen and warm to touch. If I try to walk or put weight on them, it feels like my feet will split open.

Thanks in advance, Di in Aust.

9 Replies

Hi Suntap!

Sorry about your trouble but hope you could enjoy your cruise all the same.

I wonder what sort of anticoagulation you are on and what therapeutic level also? If Warfarin can you manage to keep it steady and did you selftest during your cruise?

Best wishes from Kerstin in Stockholm

1 like

Hi Kerstin

Yes, had a lovely time on the cruise thanks. I am on Rivaraxoban/Xarelto, so no INR or self testing. Say my GP doctor today and he said that on the report from the dr at the hospital, he recommended a possible change to Warfarin as being beneficial So my dr is considering this.



With your history of previous clots it does sound very suspicious. If you have had both iv and oral antibiotics which are not working for cellulitis then again it is extremely urgent that you are seen today not in another 24 hours time. If I were me I would be going back to A&E and asking for a D-dimer at the very least.


Hi APsnotFab,

My legs had noticeably improved this morning and my gp dr has prescribed more antibiotics and he did not think the 6 day supply from the hospital was sufficient. The hospital did not do a d-dimer which is very disappointing under the circumstances



I had cellulitis from doing good too much walking after dvt in my femoral vein - it can be complication of thrombosis - but I never received treatment ando it periodically re occurs so maybe I need to check myself - but you neEd to check with gp as symptoms of dvt & cellulitis are so similar. Happy new year to you too xx


Hi Angelina

Your comment about too much walking was a good point. I was surprised something went wrong, as I was doing so much more walking that usual at home. Thanks.


I hope they did get to the bottom of it all for you and it has all settled down. MaryF


Summer before last my calves were red, hot and very itchy. Like you I had no bites and hadn't been exposed to anything like poison ivy. I went to the emergency room and the doc diagnosed me with cellulitis and prescribed an antibiotic. A week later I still had it and followed up with my primary care doc. She prescribed a different antibiotic. It didn't go away. So, she sent me to the dermatologist who knew about my APS history, took one look at my legs and diagnosed me with Schamberg Pigmented Purpura. He said it was connected to my APS. He prescribed a topical steroid cream for when it flares and itches. He instructed me to wear compression stockings daily, preferably thigh high ones. Since then, I've worn daily knee high compression stockings and have had virtually no symptoms since. I live in Washington DC where it gets really hot and humid during the summer so I bought some funky stockings that made my legs look tattoed when I wore my shorts. Got a lot of positive comments about my socks!


I, too, experienced a bout of cellulitis last year in my lower legs. I found that the ONLY thing that helped was to actually stay off of them as much as possible and keep them elevated. I thought the anti-biotics would fix it but I, too, had to have two rounds. I finally worked from home for a week with my feet up during the second round and that's what fixed it.


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