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Lupus /APS face rash.

Lupus /APS face rash.

This was my face yesterday after trying to have a wash post op. My IVC Filter was removed on Tuesday in what turned out to be a very traumatic procedure. My face feels burning hot when this happens, like it's very badly sunburnt but I've not been able to tolerate being in the sun for the last few years, as my face rash will flair up and I will be unwell for days afterwards.

If seen from the side it looks exactly like the shape of a butterfly wing but it doesn't seem to go across my nose like the traditional lupus face rash does.

I would be very grateful to find out if anyone else with either lupus or APS, experiences any thing similar to this face rash?

Thanks so much, Claire

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All is can say ( which is absolutely not on topic to what you are asking- so I apologize) is I’m happy to see your beautiful blue eyes and sweet face with colour at all with your iron counts so likely very low right now!

Hello Claire!

Hang in there!!!!

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Additionally what I will say, is I have had surgury in the past exacerbate all auto immune rash symptoms. My surgeons - and Opthomologist, as I had a rash one all over my eye lids post hysterectomy... tell me it’s a normal response to auto immune patients. I can rash with “ lupus like rashes” on my abdomen and thighs. Never face. Migraine will trigger them also. But a surgury always will. It’s a stress to the body.

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KellyInTexas, Thank you for your kind responses to both my posts. I feel I look absolutely dreadful, I thought once my blood was flowing properly again that I would at least have lost the fluid that bloats me up so much and then be able to start losing the weight I've gained. My body has been under such strain and I have been essentially house bound for a year and a half so even though I don't eat much, I also don't burn any calories either.

I've still not seen the thrombosis team yet so haven't been able to ask about the face rash, or changing anticoagulation medication. They have put me back on apixaban and I've had no heparin today despite the surgeon saying that he wanted me to stay on heparin injections until I'd discussed my anticoagulant medication with the thrombosis team. It is stressful and I have no family with me to help me get the doctors to listen.

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Hi,

I am not going to exactly answer your post but talk about previous posts and the answer from APsnotFab that she thought you should have another Specialist, who understands that we are sometimes negative and that we can never take an anticoagulation away. How did that go?

You saw a Doctor who did not believe in Lupus Anticoagulant once positive, means you have got our illnes for ever. Even if the antibodies are negative later on or when you start Warfarin. What anticoagulation are you on now? Still an oral drug?

l wonder if you are both HS/APS and Lupus positive (the illness Lupus)? I have often small roses on my chins and I guess it is connected to autoimmun illnesses not only the Lupus rash. I look very healthy with them and I have not yet started to use "Clinique" super balanced makeup this year. I am primary APS so far.... but with positive ANA.

Best wishes from Kerstin in Stockholm

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The malar rash is a very specific SLE rash which only a minority of patients have. Only a biopsy can confirm a malar rash. Many patients with SLE have a variety of rashes: V-shape rashis one example. The most important part is that you are being treated for SLE - not to be confused with the "lupus anticoagulant" which is not a test for SLE, but a complicated clotting test, which confuses doctors and patients.

Wishing you a speedy and complete recovery.

Ros

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Ros, your expertise with SLE on our site is invaluable to us. Much needed!

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Thank you Kelly, you are very kind, but always refer to a medical doctor!

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Not the homeless guy under our local bridge? Are you sure? 😉

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I understand the liability. But your expertise “ boots on the ground “ is invaluable.

Otherwise why have a forum at all? ( I’m going on the given assumption we all are under the guidance of our doctors. Otherwise, yes. Absolutely you are obviously correct!)

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I have been "online" for 17 years and during that time, I have met many courageous and good people.

However, I have also had unpleasant experiences because of is referred to as the "disinhibition effect" (John Suler), ie the ability to be anonymous and behave badly! I have seen mailing lists and communities, even run by psychologists, collapse as a result. I have also been attacked, demonized and delegitmized because of petty jealousies. This is why I always add the "please consult your own doctor"!

The point of communities is part information but also something that is not usually given by our doctors: psychological support, which was why I started LUPUS.

I really appreciate your words, Kelly. They mean a lot to me.

With good wishes,

Ros

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Ah, now I understand. That is so sad... you must have felt so unsettled within yourself. I always feel so uneasy in the world when things like that happen. “ a disturbance in the force...” Lol.

Your Lupus expertise is really invaluable to the APS spectrum peeps who are having lupus symptoms- but don’t get a lot of help with it. We find ourselves straddling both worlds but mainly in the heme world but needing both. The clotting is what’s “ on fire” so demands all the attention, but we are still “ kind of hanging out in the Lupus world but not really on fire, so we are ok.”

Do you know what I mean?

You are at least a nice manual on how to start to find the fire hose that actually works for us!

I really learn a lot from your posts and advise on lupus diagnosis and “ criteria.”

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Thank you Kelly!

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Thank you for your responses. I don't yet have a definitive diagnosis for either APS or SLE, I just have multiple symptoms and raised aptt bloods last year. This is why I'm so desperate to see and speak to either Karen Breen or Professor Hunt in person but despite telling me over the phone that she or professor hunt would come and see me pre and post op, no one has seen me and the vascular ward doctors want to send me home.

Now my IVC filter is removed I'm completely reliant on my anticoagulant meds to keep me therapeutic, apparently Dr Breen has told the ward doctor that I can go back on apixaban but this is without seeing me, without knowing my medical history and without being aware of the neurological symptoms I'm currently having post operation.

How can doctors make such decisions without even seeing or speaking with the patient, pulmonary embolisms can be life threatening, as can TIAs or strokes but they are happy to send me home alone and definitely not safely anticoagulated. 😟

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Then you must put your foot down literally and refuse to budge until one does come and see you. You have a right to be part of the decision making process and you must insist that this happens. If they won't listen ask for PALS to come and see you.

You are doing well. Try not to be too impatient, healing takes time. You need to be kind to yourself allow things to calm down. I wish you well.

nhs.uk/NHSEngland/AboutNHSs...

nice.org.uk/about/nice-comm...

nice.org.uk/about/what-we-d...

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Unacceptable! This is not how anyone should be treated. The doctor has to SEE and SPEAK WITH the patient. I fear you will need to be assertive and INSIST on seeing a consultant.

I agree with APsnotFab!

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Oh...... no way. I only thought this garbage happened here . I’m getting actually pretty darn good care , now. Seriously. You are in city where the experts are. What?!?!?!?

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Thank you for your support it honestly is invaluable to me, I feel frightened, vulnerable and very unwell and I just want to be sure that I am safe to go home before I leave the hospital.

I did put my foot down and I told the ward doctor that I'm not prepared to go home without seeing first my surgeon, as I'm in terrible abdominal, back and leg pain and need some assurance as to what state my insides are now in post op. I also insisted I see the thrombosis team to discuss my anticoagulation before going home,I've no idea if it will help tho.

I feel like I will be labeled as a difficult patient but it seems like the doctors have no idea about my medical history or recent and current symptoms.

I also just called Dr Hakim the private rheumatologist who I saw a few months ago, when I was still trying to get a diagnosis as to what was causing my excessively high heart rates and acute breathlessness. He is my Ehlers Danlos Syndrome specialist and I left a message saying I'm in St Thomas's Hospital having just had my filter removed. I explained how traumatic the procedure was and I'm hoping he might get involved and maybe get the doctors to recognise that I also have delicate and weak blood vessels, which should be considered in my post op care as well.

Fingers crossed I will get something sorted tomorrow, thank you again all for your support and advice.

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Dr Hakim sent me text saying that he couldn't really intervene, as he is not a doctor at this hospital but basically he agrees with you lovely ladies and says I must speak with the doctors and tell them how I'm feeling both physically and emotionally.

It sounds really easy advice and yes of course a patient should be consulted and spoken with by their doctors but I think we all know it's just not that easy. The doctors arrive on the ward en mass, then proceed to discuss your medical situation between themselves in front of you while completely ignoring you! Then when you try to speak up because you can clearly hear them saying completely incorrect things about your medical condition or current medical symptoms, they look at you with disdain as if to put you in your place before you say anything that might contradict their expertise 😮

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Who cares what they label you - you are right, your care comes first

You need reasurance that all is ok after surgery and that your anticoagulation is correct - my suggestion - write a list of concerns, request a written treatment plan for home, as above you have told us your worries, write this all down and ask matron/sister to help you get this across to the doctors in the morning, then you may get an ally in getting reassurance.

Stay strong and try to rest. Xx

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HollyHeski, that is a very good idea, a written treatment plan, I will definitely ask for this if I ever see the thrombosis team.

I've been seen by a physiotherapist and a falls specialist because I've had a lot of falls over the last couple of years and I think it's great that the offer this kind of support to the patients.

I want support and input regarding the life threatening side of my health conditions, however, plus the reason I have had these falls is because of the TIA and neurological symptoms I experience, rather than due weak muscles etc.

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If HollyHeski's plan does not work, revert to mine. Smile sweetly with the ward sister or whoever is the nurse in charge and say, please ask PALS to come and see me. This alone will probably send shivers down their messaging system and hopefully bring you attention. BTW you can simply call them yourself. 020 7188 8801. Email: pals@gstt.nhs.uk

Tell them which ward you are in and that you are not allowing anyone to discharge you till you have had a chat with them.

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I like your plan not fabs, Cindy

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I wish I were there- I would come visit you! We would all come and help you work this out. I’m glad we can be of some help via this forum.

You will get stronger!

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APsnotFab, the nurse said that the doctors are definitely coming to see me on the ward tomorrow, so if they don't then I think I will have to call them. I don't really want to have to involve pals as I know I will then be labled as a difficult patient, it's so wrong that you have to do these things simply to get a safe level of medical care.

I already have a complaint with my local hospital Trust because of the appalling treatment I received from them last year, so I really don't want to have to go through all that again with this hospital, I honestly believed that the treatment would be so much better at a London hospital, it's very disheartening 😥

KellyInTexas, I would definitely welcome your visit!

Thank you again for your support, I was on the verge of tears when I posted on here yesterday and just having your understanding and supportive comments has kept me from being reduced to a blubbering mess by this very upsetting situation! 😢

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I hope they sort things for you.It was opposite for me and I contacted PALS on leaving.Now they jump through hoops for me as was accused of neglect

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So sorry to read this happened to you. It should not be the case that to receive appropriate care, to have experienced neglect by the very people who should have been caring for you!

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Hi Fra,

I think you must "put your foot down" as APsnotFab says to Leakeadeadea above on her post.

I have followed you for quite a long time and I think you have not got the help you need from the "Specialists". Get copies of everything so you have a real background. You could also say it in a nice manner. You have the right to get this help I suppose.

As you have been on this site for a rather long time you know this illness now and what to expect from the Specialists. I have not exactly understood what happened to you with the PALS. Could you explain please.

Best wishes from Kerstin in Stockholm

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I will pm you as don't want to hack someone's post

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I caved and started crying my eyes out, I'm in such acute much pain in my abdomen and back, down both legs and even down my arms and the extra liquid Morphine and paracetamol they are giving me on top of my usual slow release morphine is not touching it!

My lower abdomen, back and kidney areas are on fire inside and the bubbling sensation I get in my legs, I think due to incompetent veins and back flow of blood, is worse than I've ever experienced it. I have a high tolerance to pain due to my EDS but I cannot cope with this.

They stopped the heparin injections and now all I have is the apixaban and I think that's whats causing the out of control pain, I've read that with APS you are symptomatic and experience neurological symptoms and pain when not therapeutic, so maybe this is why I am in so much pain and am also having blurred vision, flashing and auras etc.

The nurses have informed the doctors and hopefully they will come and see me soon, my heart rate just went up to 156bpm and I was only sitting on the bed washing my arms, a lovely student nurse washed me from the legs down, as I would definitely collapse if I attempted to try to bend etc.

I just saw the ward doctor and he said he would get the pain team to see me but I was told that had been requested on Tuesday. Apparently my vascular surgeon is now in Australia now so he can't come and see me but the doctor said that he would ask for the thrombosis team to come and see again, please god they do....

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Sometimes you just need a good cry... honestly.

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Oh my. You are in my thoughts and prayers.

Gina in West Virginia

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At last I have finally seen a haematologist doctor, who was lovely and really listened to me, I've already forgotten her name but she was young and slender with long blonde hair.

She is arranging for a blood test to be taken both before and after I take my evening apixaban, to see whether I'm actually absorbing it properly and also said that she would speak with professor hunt about my going on either heparin injections or warfarin instead.

I showed her my IVC filter and explained how severe the erosion had been and the trauma this has caused to my main vein and she was pretty shocked. She said that just because I haven't had open surgery, that it doesn't mean I'm not probably just as internally traumatised, hence my acute pain levels.

I showed her the pictures of my face rash and she said she is going to do some lupus and autoimmune blood tests as well, as the rash and other autoimmune type symptoms definitely warrant investigation. She is also looking into my current state of anemia to see if I need iron or a transfusion.

I also saw my lovely heart /respiratory doctor again and he told me that I'm looking at a 6-8 week recovery time, as far as my heart and blood vessels getting used to the new blood flow is concerned.

I'm going to be assessed for home oxygen and that entails doing a six minute walk test without oxygen, so that should be interesting, given that my oxygen saturations drop simply getting in and out of bed.

I feel so much better now having spoken with a haematologist doctor, thank you all so much for encouraging me to speak up for myself and insist on seeing the right doctors, I am so very grateful for your support and understanding 😘 xxxx

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Good, someone listening to you. Dont feel pressured to go home until you feel confident, hopefully as its now weekend, they will leave you to rest.

Hope you pain is managed soon - big hug brave girl xx

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Thank you god, my prayers were answered. I myself was feeling anxious for you.

So glad and relieved for you.

Good luck with your walk test. Please be sure someone walks with you if the staff does not. Onward and upward we can start to heal now I hope.

Please keep us posted Cindy

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❤️❤️❤️❤️❤️❤️❤️❤️❤️

Oh this makes me happy. I thought I was going to have to fly to London and kick someone’s a$$. And I’m quite small so it would have really been a scene.

Hahah!!!! Don’t laugh! It will hurt your vein recovery! ( just checking your 02 saturations when you try to laugh- have a quick look at the machine now- what’s it reading?!?! )

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Thanks again ladies you really are all so marvellous!

I know that I wouldn't have been brave enough to make a fuss, if you hadn't been so reassuring and adamant that I should make a fuss!

I didn't get angry or raise my voice, I just let them see how I was feeling and I think then it was obvious to the doctors and nurses that I was in a very bad way.

The nurse has given me bags of ice to put on my groins and abdomen in an attempt at pain relief until I see the pain team!

I want you to know that I appreciate every single post, every kind word and every wonderful piece of advice you have all given me, on this post and all my other questions I've posted since I found this amazing site. You must be angels in disguise!

Kelly you are so funny but you're right I dare not laugh right now! 😰

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Sorry... too soon!

We will try it again tomorrow!❤️

Oh- and just so you know- I’ve told my sisters all about you and they wish you well also! And my husband! You’ve got the whole Texas team rooting you on here!

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Awwww thank you Kelly!

I have to say I am getting more support from my online family and friends, than from my own family at the moment, which is a bit depressing.

My sister was here on Tuesday for the op but I don't have any family visiting me now so it's very difficult, especially as the lady in the room with me has one or both of her daughters with her most of the day, every day and her grandsons visiting too. In fairness I'm not married and I have no children of my own but I've still got my dad, stepmother, sister, brother, two half brothers, a step brother and a step sister, most of whom are only 20 mins away by train. My mum wants to visit me and I've been calling her a few times a day but she really isn't well enough to travel up here, as she can't walk very far at all and this hospital is vast!

Cindy,

Talk about be careful what you wish for! I almost collapsed in the toilet this morning and had there not been a shower chair in the room I could sit on and put my head down, the nurses would definitely have found me on the bathroom floor!

I didn't realise that my oxygen canister had run out and apparently my blood pressure had gone very low. It was horrible, I thought I would vomit and I was holding on to the shower support bar for dear life to stop myself from falling to the floor, thank god the room had an emergency pull cord. Once the nurses brought a new oxygen canister, put the mask on me and I was breathing oxygen again I began coming round, the nurse said my BP was 80/? and that was after I was sitting upright again and on oxygen and somewhat coherent again.

I'm hoping they will get someone to check on my BP, heart rate and oxy sat's when I'm upright and trying to do anything, as they keep taking my observations when I'm lying down at rest and on oxygen, so I don't think they have true idea of what happens to me as soon as I try to do anything.

It's the weekend now so not much will get done now till Monday I'm sure.

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Sorry about that. There is nothing worse than being on a bathroom floor in the hospital. Thankfully you were okay, are they checking on you more often now?

You can always ask them to check your vital signs: BP, pulse especially when you dont feel right.

Have them show you how to tell if your oxygen tank is getting low, it’s simply looking at the needle position on a gauge. This will give you some self assurance that it won’t be empty.

It is still their responsibility to check but at least you’ll have peace of mind. Then if you notice it is getting low you can politely remind them you will soon need another so they can have one available for you because they are at times in high demand and are hard to get one on the floor your on.

It’s too bad your family isn’t there. I’m sure others as well as myself will be back to check on you. We won’t let you be alone. Chin up your progressing now.

I hope you have a peaceful, uneventful day. xO, Cindy

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Excellent, Cindy!

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Thank you Cindy,

I took your advice and asked the nurse and I now know how to check the oxygen levels in the portable cylinders.

Yes they did check my BP etc once back in bed and kept checking until it was above a certain level and they do come round a few times a day to check everyone's observations anyway.

After about seven hours resting I was feeling better and was able to sit in a chair for my iron infusion. The six minute walk test was ok, the physio walks with you and I had the oxygen with me in case I needed it. She used my own personal finger heart rate / oxygen monitor which tends to overestimate the saturations by about 4-5, so if saying 94%, it's probably about 89% and that is all it dropped to.

I was walking very slowly and felt really nauseous and dizzy but typically whenever I have a doctor or medical person present, you can bet I won't have a major oxygen drop!

If I get up slowly and then walk a short distance very slowly, my heart rate will go up disproportionately to what I'm doing (130-140bpm) but my oxygen saturations doesn't drop acutely. It's when I try to do something slightly strenuous like bend to put socks on or try to put groceries away that I will get a more profound oxygen drop into the 70s%, followed by excessively high heart rates where my heart has learnt to work harder in order to give my body the oxygen it suddenly needs (ie 150-180bpm) .

Anyway my body and its symptoms seems to be an anomaly in general, so I just continue to confound the doctors and nurses 😯

Once again thank you for your support and very helpful advice xx

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Are they giving you Zofran IV to help with nausea, or will that interfere with your BP?

( zofran ( onedesterone I think it is) does not have a lot of “ brain interference” the way Phenergan (promethazine ) does. )

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KellyInTexas,

I have been given an anti nausea medication today since having my early morning episode but I don't know what it is though. It's a tiny tablet and has definitely helped.

My insides are back on fire again so I'm asking for some ice packs again. Unfortunately now it's the weekend I won't see the pain team till Monday.

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I’m glad it’s helped. Try to remember to ask what it is, and see if you can have it prescribed for you upon being discharged so you can have it on hand at home. ( you may need it off and on during recovery.)

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Good idea 💡Kelly!!

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Hi Cindy, I wish I had good news for you but still not seen the pain team, thrombosis team, well any doctor in fact. I am in excruciating pain and was all day yesterday and overnight. I slept a short while after being given dyhidracodeine, no idea how to spell it but when I was woken up by the nurses at half six I was unable to move for over 40 minutes my pain was so bad! When I finally managed to get to a sitting position I felt sick and dizzy and was too scared to go to the bathroom as I was terrified I might collapse again. The daughter of the lady in the room with me got me some water as I had run out and said she would check on me in five minutes if I didn't come back. I was as quick as I could be which is not quick given the pain but as I was coming back to my bed I felt like I was about to pass out again. I had my finger Sat's monitor on and it started alarming because my oxygen saturation dropped to 78% and that's with oxygen on. Thankfully a lovely male nurse was in the room to do obs and meds and witnessed my monitor now flashing 79% and he helped me onto the bed and repeatedly checked my BP and sats until it had come back up to an acceptable level.

I had more dyhidracodeine as I had to go for an echo and there was no way I could go anywhere with my pain levels so acute. The echo tech was lovely and we discussed whether he thought my brain clots were caused by vein clots going through my pfo or whether they could be arterial. After giving him all the details of my brain MRI and clotting history, he said that the chances of a clot going through my small intermittently open pfo are tiny and I would have had to had a secondary reason to have the pressure on the right of the heart to be higher than that of the left, which there wasn't as I was checked for pulmonary hypertension by my cardiologist after the brain MRI results. More and more the evidence is pointing to APS, I just hope the thrombosis team can see that 😮

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How are things going for you? Are the pain patches helping?

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