Burning rash: This is just one photo of my rash. It... - LUPUS UK

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Burning rash

CecilyParsley
CecilyParsley
49 Replies

This is just one photo of my rash. It is on both legs and spreading. It burns like mad as if I have scalded myself but the pain is coming from my feet and joints.

49 Replies
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louise-a

looks nasty. maybe they will be able to give you an idea what it is or state could be lupus related, in writing. Also whatever it responds to regards medication. Rest up, and take care Lou xx

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CecilyParsley

Thank you Louise xx

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Barnclown

Oh dear: cecilyparsley...i’m with lou....seems v severe to me....this reminds me of cellulitis...what are your medics saying now? 🍀❤️🍀❤️🍀 Coco

PS just read your previous post too, so am aware of the background...am feeling v concerned about you

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CecilyParsley

Thank you so much. Rash is spreading rapidly. I am being reviewed in the morning.

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Barnclown

Please let us know how things go...i feel i can say: we’re all right by your side XOXO

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honeybug

Hi CP

I agree with Barnclown looks like cellulitis which needs immediate treatment to prevent sepsis.

Please get it checked.

Best wishes abundant blessings.

EJ xxx

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panda2

Oh dear god... This is very awful and you are clearly in a bad way. I've checked out your other post now too and see you're being followed up on and hope you're well tucked into the hospital now. Not that anyone wishes that one anyone, but you are not well and need specialist care and proper attention. And you need desperately to be vindicated from that horrible Rheumy you've seen. But you did not need to be vindicated by becoming terribly unwell just to prove him wrong! 😡

It's all so backwards and a terrible game with your health. Please let us know how you are. A whole lot of us clearly have you on our minds.

Panda x

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louise-a
louise-a
in reply to panda2

quite agree Panda. xx

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CecilyParsley

Thank you so much. Your post made me cry because I am so frustrated and despairing of my situation. I saw a different GP today and at least he listened to me and understood how difficult it was to have been put in this situation by the Rheumatologist. Sadly although he ruled out sepsis he could not rule out or in anything else.He said it could well be a Lupus flare or a skin infection such as cellulitis but either way said it needs further exploration with regards my immune system. So the advice was bed rest, 500mg antibiotics four times a day and 20 mg morphine twice a day. If my fever worsens or the rash worsens I am to go straight to A&E. Thank you again for your compassion and concern. It is so much appreciated xx

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Barnclown

Thanks V MUCH for this update. Am relieved you got a good caring GP. I hope this treatment plan helps a lot & quickly. You poor thing 🍀❤️🍀❤️

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panda2

Awe, I'm just so sorry to know you're going through all this. That bad Rheumy in your big-picture background must be giving you a sense of nowhere to turn. It's good, in a way, that you were somewhere else, with objective others looking at you.

After you've had the chance to let the antibiotics work and get that pain med into ya and have a good, good rest, you might find you're more able to find some nuggets in all this with a new plan forward. i.e. This GP said 'could well be a Lupus flare' or 'infection such as cellulitis' and 'it needs further immune system exploration'.. not to mention the proof you have in pics, antibiotics and the GP's notes. These are all powerful things for potential much, much better care ahead.

Rest well.

Panda x

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CecilyParsley

Thank you, I really hope so. The rash feels like a burn so is stinging but the pain in my feet, ankles, knees and hips is dreadful. When the Rheumatologist stated that I didn’t have Lupus my CRP level was 8 but I had been on 600 mg Hydroxychloroquine for nearly three months. I truly hope that they have appointed to the vacant Zrheumatology posts so that I never have to see him again xx

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panda2

I SO hope for that for you too!!

Do you have any aloe in any form? I love my aloe plant for stinging burn sensations, but a gel or cream might help here too? That pain sounds terrible. I hope the morphine does something for you. 🤞🤞

Panda x

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CecilyParsley

I haven’t got aloe. I usually use Diprobase on my skin but had to wash it off yesterday as the burning intensified. At least the morphine is making me drowsy. My hubby and dogs are sitting outside in the sunshine and I am in bed with the doors open watching them. Next best thing to being there. I am so relieved that I haven’t totally ruined his holiday, it has been such a dreadful year xx

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panda2

I can see that perfectly -- you enjoying your hubby and dogs enjoying the outside.. How lovely that you've reached that place within after this hot burning mess and such a dreadful year.

P x

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KayHimm

Sounds like the doctor was concerned and gave you clear direction. Did he do blood tests to try to know if this is a flare or infection?

Hope the antibiotics start to work.

Really feeling for you.

K

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CecilyParsley

Yes Kim. He said that my bloods show both infection and inflammation. I asked what my CRP level was and he said 50. I tested clear for sepsis. The Flucloxacillin 500 mg four times a day have lowered my temperature to 39.2, my BP is still raised at 176/98. I think that may be because of the constant pain. He still would not prescribe diuretics even though I am struggling to walk even a few steps or articulate my ankle due to the odema. Thank you very much for your support x

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KayHimm

Do you have a blood pressure machine? Might be a good idea to monitor that, though I guess the doctor would have mentioned it if he thought it was necessary. That is a great sign that the antibiotics have kicked in and your temperature is lower. He probably had his reason not to prescribe the diuretic. Awful to be in pain like that, though.

Again, do not hesitate to go to A & E if you get any new symptom or increase in the fever.

It must be so scary to be going through all this. The fact that you are not septic and your temperature has come down sounds encouraging. I think the doctor would have admitted you had you not responded to treatment so fast.

Keep improving!

Xk

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CecilyParsley

I have a BP wrist monitor at home but not here. My joints are so painful, I have a mouth full of ulcers, I am exhausted, my eyes are very red and dry despite using Hylo Forte four times a day. I hope the rash does not spread further. Fingers crossed xx

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KayHimm

Well, with the mouth ulcers, joint paint and fever they must be worried about an autoimmune flare and infection. You have to trust yourself and get medical care if you worsen. Sounds like the doctor is on top of things.

K

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CecilyParsley

I wish I believed that. The first GP was rude and kept saying it was “ too much to deal with” , the second said he didn’t know whether it was Lupus or Cellulitis but ruled out Sepsis. The advice from both was just go to A&E if you get worse. I will ring my own GP today and make an appointment for when I get home. It feels awful when doctors look at you with eyes wide and tell you they don’t know what is wrong. I need to get a copy of my blood results too. For the pain I am in tge CRP of 50 seems lower than I would expect?x

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KayHimm

Well, it makes sense that a general doctor who is seeing you during a crisis and does not know you would not weigh in on a complicated diagnosis. I think his job is to know what needs to done now and make a determination of whether there is an infection and possible autoimmune flare. The diagnostic tests would take weeks to get back anyway. I know that must not seem helpful right now because of the conflicting opinions you have had. But I do think the doctor has to focus on your immediate health and keeping in the back of his mind that you also may have autoimmune disease since that was your diagnosis from specialty center.

You can feel assured that by going to the doctor you have been assessed in many ways that you may not be aware of. He has likely checked your kidney and liver function, examined you for heart or lung problems and noted your mental status.

Your regular GP will be able to go over CRP with you and follow up on needed tests. I think you will feel better with your regular doctor.

Hope you feel better soon.

K

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CecilyParsley

Thank you

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Barnclown
Barnclown
in reply to panda2

WELL SAID 👏👏👏👏🍀❤️

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Cas70

OMG this is awful - so many of us suffer unnecessarily through the attitude of so called Consultants. Avoid Diprobase from now on, it made my skin worse. You need a lighter cream - Eucerin - any cream with Euria in it. Also when this happened to me I was given the top strength DermaCool which helped. Some “Consultants“don’t consult they have already decided - don’t treat the whole person. If you have a support group near you or can look up on line, choose a Consultant who deals with Lupus and tell your GP you want to go there - we have the right under Patients Charter - try Guys if it isn’t too far. Centre if Excellence. Good luck x

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CecilyParsley
CecilyParsley
in reply to Cas70

DermaCool sounds wonderful. I wish I had some right now my legs, thighs, hips and buttocks are raw and tight. The GP did not even ask to see the rashes higher up than my lower legs? I have been to St Thomas’s Lupus Unit and they confirmed SLE, APS, Raynauds, Bechets, Pernicious Anaemia, Spleenamegaly, Hypothyroidism,Vitamin D deficiency. This new Rheumatologist said that they had given me “crap advice”, that I must have had an “autoimmune episode” but that I was now over it?? He is actually the Consultant that runs the local Lupus group. What chance do I have? Xx

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Cas70
Cas70
in reply to CecilyParsley

Every chance if you

A keep going to Guys

B. Choose another Consultant fro another hospital

C. Take their name & hospital and TELL your GP you want to see someone new

I have done this, and three others from my group too

If you want to write to me privately do so

Guys cannot be wrong you have too much going on for him to say that.

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CecilyParsley
CecilyParsley
in reply to Cas70

I know I have to do something but I feel so worn down by everything at the moment

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Cas70
Cas70
in reply to CecilyParsley

I really understand, honestly. I have Lupus and Sjogren’s. My skin is a nightmare at present, Sjogren’s is a daily battle. I am sole carer for my husband with advanced COPD. I have got so run down I have bronchitis. This has also given me tooth and ear ache. I feel like turning my face to the wall like my husband has but I know from the last 4 years that it will get sorted out.

When you have the strength take one small step at a time daily, and if you write a list it will give you a pick up every time you cross one thing off.

I know if I dwell on the situation I am in I would cry but the crying wouldn’t stop. So don’t dwell - list ! 😘

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CecilyParsley
CecilyParsley
in reply to Cas70

I am so sorry for your situation Cas. Life is so damned hard sometimes I know. This year for me I have supported my husband going forward with reporting his childhood abuse, had my cocker spaniel go blind, then have both middle and inner ears removed, now my other cocker is having ear problems and has a lump that needs investigation. My health has come last amongst this. I have always been such a fighter but at the moment with no GP or Consultant support I do feel beaten. I will pick myself up again. I am a great advocate of to do lists too xx

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Jmiller623

Hi Cecily! I am so sorry that you are having so much pain. That looks painful. It looks like stasis which gets red and angry. It’s when blood pools in your legs with no push back to the heart. It burns pretty badly. You should see your doctor to help optimize your fluid status and make sure that there isn’t an underlying infection brewing. The best you could do is rest and elevate your legs for now. If you could tolerate compression, that may help as well. If you’re on any water pills, make sure to continue taking them as this will help with congestion. If you get a fever or further fluid build up, you should go to your emergency room.

Again, I’m so sorry you’re not feeling well. I do hope things get better in time. ❤️

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CecilyParsley

I looked at photos of stasis and cellulitis and to me they look different to my rashes. I have no broken skin, no bubbles, no leaks, no oozing. The two GP’s both refused diuretics we specifically asked for them on each occasion. The burning is uncomfortable as is the lack of any flexibility in my ankles and knees due to oedema but the pain in my joints is dreadful.Tomorrow I will get my husband to buy me some apples and green tea as they are natural diuretics and might help the tightness. Thank you so much for the advice x

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Jmiller623

Swollen like a grape. It’s the worst. Like can’t even tie your shoes bad. I’m so sorry. I feel for you. I do hope you get things under control soon. Sending many hugs your way!

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CecilyParsley

Thank you I cannot even get shoes or leggings on. I had to go to the GP in the only dress I brought with me and Birkenstock’s in the rain lol. Horribly tight. Thank you so much for the hugs xx

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Melba1

How are you today? I think if you’ve still got fever and that awful rash you should go to A&E with a good rheumy department. Sometimes it’s only by seeing rashes like this themselves that the puzzle pieces drop into place and you’re clearly very poorly and need help for this attack but also getting seen whilst so poorly may help with accurate diagnosis (and bad rheumy). I had a very impressive rash when I was last admitted that didn’t bother me at all (not painful or itchy) but the drs like visible indicators and they got the dermatologist to confirm it was secondary to the lupus flare and got the hospital photographer to take photos to put in my records.

Hope you feel a lot better soon and get back to St Thomas’ or get a decent rheumy locally xx

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Mimisky1
Mimisky1
in reply to Melba1

Can I ask what your rash looked like and where?

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Melba1
Melba1
in reply to Mimisky1

Hi, I can’t seem to put a photo onto replies but if you click on my name and look at my last post there’s a photo. The dermatologist diagnosed it as vasculitis and said it’s part of lupus flares for some of us (blood vessels get inflamed and bleed). Mine doesn’t itch or hurt at all but can cover all my lower legs and sometimes forearms looking like red/ purple spots then quite quickly fading to bruise looking marks. There are so many different types of rashes with lupus though so best to take photos and try to get to rheumy/ dermy when yours is bad. My rheumy use it as one of the signs that the lupus is active. It annoys me a bit when they are all fascinated and spend ages looking at and measuring the rash rather than talking to me about all the much bigger important lupus flare signs that they can’t see - but they all like something visible! X

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CecilyParsley

It looks like burns / scalds and it feels like a bad burn. It started in a patch halfway down both shins. Within hours it had spread down over my feet, around my calves. The next morning it had spread to my thighs and a small part on my buttocks and hips. My legs are so swollen I cannot get my loosest of leggings on or wear shoes.. I have looked at lots of photos of Lupus rashes, cellulitis etc and it doesn’t seem to fit exactly. I am exhausted, have a mouth full of ulcers, I am struggling to weight bare and my joints hurt. I did put a photo on another post

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CecilyParsley

Hi, I am still very inflamed but it does not seem to have tracked further up my body which is a relief. I am struggling badly to walk a few steps, the oedema is stopping me articulating my ankles and I am losing my balance. I am going to get my husband to get me some apples and green tea to try and rid myself of some of the oedema. I guess it is early days yet. We have taken photos to show my GP and Rheumatologist. I truly hope I get home in a week and find that they have filled the Rheumatology posts and I get allocated a new one 🙏🏻. Thank you so much for asking xx

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Melba1

I hope so too, a good trusting relationship with our rheumys is so important and you deserve a good kind one. If you get any worse please go to A&E xx

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baba

How are you now? Hope you are getting better.

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CecilyParsley

Hi thanks for asking, well I am a work in progress. We returned home from our holiday as I was just stuck in bed and struggling to walk. Halfway home the GP practice I visited rang and asked me to call in urgently. They then said they would ring my own GP and send them my blood results so that I could be seen. The journey home was difficult, four hours travelling in pain. When we arrived home the rash which had faded had returned with a vengeance. This morning my surgery rang and said I should call and see the emergency GP. Of course she had not read my notes, knew nothing of my history or why she had been sent the blood results. I thought my husband would blow a gasket . Eventually we were on the same page but she said I have only just qualified I know nothing about Lupus and I don’t know if this is cellulitis or Lupus or whether you have both things going on. She said my ANA and ENA were high but even though I asked her twice she did not give me numbers. She has put me on yet another weeks antibiotics and diuretics. I have an appointment on Tuesday for full bloods and she will ring me a week today to see where we go next. Sorry long answer

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baba

This has been going on too long. If your GP “ knows nothing about Lupus“ she should be referring you URGENTLY to someone who does.

You have had blood tests and antibiotics and still no better, you now need to be seen by a specialist.

Good luck.

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CecilyParsley

I agree completely. As a coincidence my husband bumped into a lady we know who had been sent to see the same Rheumatologist. Just as he had done with me, he took her off her medication and when she complained said “ prove me wrong”. She is now pursuing legal action as she has become very unwell , although not Lupus related it is shocking that we both were treated so badly. I told this young doctor that I had absolutely no faith in him and would prefer to be seen by someone else. She said if my inflammatory markers were still high next week after two weeks of 2000 mg antibiotics then she would do a letter for an urgent appointment. It is clear to me that she will not make waves. Once I have had my blood results next week I will make a decision on how to proceed.

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KayHimm

But if she is unwell for reasons not related to his area of specialty why would he be responsible? The medications used to treat autoimmune disease have significant side effects, and just throwing meds at people who do not have confirmed autoimmune disease is not good either. The thinking is that even if there are months that a patient goes without treatment, it is better to wait until autoimmune disease is certain before going in with serious treatment. Would you think it is appropriate to treat someone for cancer if you weren’t sure their symptoms actually were attributed to cancer?

It could be that, though the rheumatologist has a terrible way of communicating with patients, he is actually a serious doctor who knows not to give toxic medications to patients who don’t warrant it.

“Prove me wrong” sounds harsh but may be cautious and protective.

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CecilyParsley

I could not disagree with you more. I will keep this short as I am in a lot of pain and therefore have a limited tolerance level. I was diagnosed with Lupus in 2009. I was bedridden for months. My diagnosis was reaffirmed by a Neurologist, Haematologist as well as the Rheumatologist. My diagnosis was questioned in 2012 given my profusion of genital ulceration. I sought a second opinion at St Thomas’s Lupus Unit who confirmed SLE. My last two Rheumatologists believe I have SLE,Bechets, APS and other autoimmune issues such as pernicious anaemia, Raynauds, Underactive Thyroid. This new Rheumatologist who you describe as a serious doctor prescribed 600 mg Hydroxychloroquine which led to macular oedema. When I had an emergency review arranged he, without examining me took me straight off it concluding that my brain had “ made up” the lack of peripheral vision and imagined the macular oedema. I now have the freedom of information request proving on the scans that it was very real. Not what I would judge to be competent or professional.

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KayHimm

I was referring to the woman who is suing the rheumatologist for non-lupus related symptoms. It certainly makes sense to me that you would see the experts at the academic medical centers. You should continue to see the doctors who you trust and who have accuracy diagnosed you in the past.

By all means, go back to your original doctors.

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CecilyParsley

I only added the issue of the other woman Simply because he had used that same phrase more or less to me. He said if you get very sick you will prove me wrong whereas he said to her prove me wrong. I am not au fait with her illness only that it is a chronic condition and we have had the same Rheumatologists for the past five years. I think his attitude is flippant and cavalier and he is playing with people’s lives.

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KayHimm

He does not sound like a doctor I would want to see!

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