Does any one else with APS/Hughes hav... - Hughes Syndrome A...
Does any one else with APS/Hughes have/get bone infections? Two times in facial bone and one time in tibia post-surgery! LisaWa
HELLO, I HAVE APS/LUPUS ANDI RECENTLY GOT BITTEN BY SOME INSECTS ON MY JAW AND HAD AN ITCHY RED PATCH ON MY NECK WHICH WOULDN,T GO AWAY.THE DOC GAVE ME CANESTEN CREAM...SEEMED TO WORK .THEN THE RASH TRAVELLED UP TO MY JAW AND MY SKIN IN FRONT OF MY EAR. IT FELT HARD AND LUMPY ON THE JAW BONE....ANOTHER DOC DIDN,T LIKE IT AND GAVE ME ANTIBIOTICS WHICH DID WORK....SHE THINKS IT WAS AN INFECTION UNDER THE SKIN (NEAR GLANDS) OF THE JAW BONE....IT WAS THERE FOR MORE THAN 2 MONTHS..
My sis has APS/HUGHES and has sores on each foot that are horrible open sores and have been there for over 5 months. Slowness of healing seems to be common from the little research I have accomplished. Let's hope for no more sores!
Hi Lene
Good to hear from you and your Sis.
Hope she getting a little better, Is she still in the nursing home, I do hope all is going well for you both,
Take care gentle hugs Sheena xxxxx Jessielou xxxx 
Hi Jessilou, My Sis went from hospital to nursing home for less than 2 days, back to hospital for about 4 days and is now back in the nursing home. She is so sick. Now her hands are starting to swell like her feet did before she got the open sores on her feet....hoping her hands will stay in tact. My Sis loves you. Every time I take her copies of the blogs to read, she asks, "Anything from Jessilou?"......Gentle Hugs back to you from us both!!!
Hi Lene and Karen,
Thank you both for the hugs.
I`m so sorry Karen that your hands are swollen too now, I hope they don`t hurt to much. There is quite enough pain in your world I`m sure!!! You and your sis inspire me with the strength you show in the face of this horrid disease. When I feel down in the mouth and low. I think of others who are having it so bad, you included! Then kick myself up the backside and stop feeling sorry for myself.
Don`t get me wrong Hughes is having and has had it`s fun with me, but the treatments are starting to help, so I`m hoping to achieve some degree of normality for the first time in a long time.
My daughter read some of the posts you`ve made Lene and said I wish you had a friend like that mum, my answer I think I have quite a few!!!
I wish for a magic treatment that will make this all go away for all of us!!! One day maybe!!
Glad to have met you both.
Take care, gentle hugs love Jessielou xxxxxx Sheena xxxx
Hi Jessielou, It is GREAT to hear from you, and I am quite anxious to share your message with Karen. She is back in the hospital, unfurtunately. They believe that she may have another blood clot. The swelling in her hands have gone down, thank Goodness! Karen said she caught a glimpse of her right foot yesterday while wound care was tending to it and she was a bit freaked out telling us about the hole in her right foot. I wish so badly that they could heal her wounds. APS is one angry monster! Do you happen to know of many folks who suffer with renal failure and have APS? As you know Karen is in end stage renal failure and must have dialysis to continue life. Was wondering if you would share your medical regimen with us, was hoping that perhaps your docs may be doing something that her docs may be willing to try. As always, Karen will smile and say "I love Jessielou and her gentle hugs" as I watch her read your mssages. Have a wonderful week,
Lene'
Hi lene and Karen,
sorry to hear Karen back in hospital, I know there are others who have renal problems with Aps , hopefully some of them be along with more help.
I have Aps, lupus symptoms overlap (the drs waitin for antidsdna to go positive), plus fibromyalgia, i tend to suffer with neuro and pulmonary symptoms, plus joint pain, swelling, cramps, skin sores,rashes, facial pain, mouth ulcers, dry eyes, dry mouth, jaw pain etc.
Treatment regime is: warfarin (inr 2-3, not high enough), sertraline,(Fibro), slow release tramadol and pregabalin (pain), atorvastatin (high cholesterol, important to keep low in aps because adds to risk of clotting), inhalers, montelukast (asthma), fexofenadine (allergies) also carry epi-pen at all times. Nebuliser (asthma)(lung problems caused by clots), calciferol (low Vit d), migraine meds as needed, steroids as needed, anti-biotics when needed for (chest, urine tract, skin and throat infections).
I see respiratory meds consultant, lupus specialist, haematologist, Hughes specialist, chemical pathologist and gastro consultant.
Hughes specialist prescribe plaquenil, having difficulties with gp, so not strted on it yet, but it is supposed to help with lupus symptoms, Aps aches and pain etc. Hoping i get it soon.
Ultimately clot prevention has to be the most important goal, increasing blood flow to all parts of body.
I know a lot of patients on here prefer inr to be around the 4 mark, for reduction of symptoms and prevention of clots. These patients self inject heparin when inr drops below there lower range.
Glad swelling in hands subsided. Feet sound awful, i hope they can heal them.
I hope they manage to stop the clot asap. Will ask around about the renal side see what I can find out.
Sorry if i've waffled on, don't know if anythin helps.
Prayers and thoughts are with you, sending positive thoughts your way.
Take care gentle hugs love jessielou xxxxxxxxxxxxxxxxxxxxxxxx
Ye. I had a total knee replacement in March last year. I came out of hospital with an infection. I was on 8,000mg of antibiotics a day, for three month. Not nice. I get infections regular.
Hi Lisa
Welcome and glad you found us,
I find that I get trouble with sores that just will not heal, when they do lots of scarring. Drives me crackers cos I don`t really know where the sores come from in the first place, another immune system mystery I guess!!!
Im sorry you having such a tough time.
I hope you feeling ok today
Take care gentle hugs Sheena xxxxx Jessielou xxxx
If I have any form of extra inflammation in my body, ie a tickling cough which won't stop, or extreme cellulitis in my ears or bladder/kidney infection. or saliva glands in my neck get blocked.....my feet and hands swell up and go bright red and purple and I lose all my nails..
once infection recedes my hands and feet take around 5 months to recover, the longer an infection is not treated, the worse it is - (now I have good GP this is sorted promptly), before this, at times I hitched to hospital.. (living rurally and being a non driver), .the cycle of my feet and hands turning into open sores takes around 5 months recovery... but again with myself, it is overlapping conditions, this is also a feature of psoriatic arthropathy. My new GP knows that the quicker I treat something, the better and does not leave me with something getting out of hand..
MaryF, Bless you my dear. The pain and suffering that APS patients go through is phenominal to me. You must some of the strongest people on the planet and my hat if off to all of you. My Sis constantly makes me so proud of her in the show of strength and will to fight. You may have a point there with the lack of attacking the infection. They (only at times) give her antibiotics, which seem to help but never heal her. Sound like your GP is a good one! Thank Goodness, that is a HUGE part of the battle once diagnosed (in my opinion). Have a good week, Lene'
