Advice please re excessive swelling and burned l... - LUPUS UK


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Advice please re excessive swelling and burned looking skin


Hi everyone, can I please get some advice? As you know I was taken off Hydroxychloroquine at the end of June after my new Rheumatologist upped my dose to 600 mg and I developed macular oedema. He then stated I did not have Lupus, Bechets or APS just Fibromyalgia, based on one blood test. Ironically he said if you get very sick you will prove me wrong. I have had ulcers in my mouth , throat and groin which cleared up and we came away on holiday to North Wales on Saturday to de stress. Yesterday my feet swelled badly and started to burn. Today my lower legs and feet are so grossly swollen I cannot bend my feet, knocking me off balance. Tonight the virulent red rash has climbed up over my calves. I literally look as if I have been scalded and my skin is starting to leak oedema. I am in such pain and really do not know what to do with myself. I will try and get an appointment as a temporary patient with a GP here in the morning. My husband thinks that I shouldn’t tell him all about the Lupus diagnosis, but I think he needs to know to make informed decisions about my treatment. If they won’t see me I will have to go to A&E which I am not keen on as I am struggling to stand and sit and I cannot get my leggings on..we had to cut the ones I wore today off as they were so tight due to the swelling. Any advice would be so welcome. I feel so sorry for my husband he brought me here to relax and I would love to but I am just sitting rocking. Sorry pity party 😞

36 Replies

Hello CecilyParsley ,

I am a daughter of a lupus sufferer. I developed autoimmune issues at 48. Not lupus but ra and sjogrens.

Do you feel able to build up trust with your new rheumatologist? This takes time on both sides of the doctor patient relationship.

I was on hydroxychloroquine for sjogren s put was taken off it because it made me fall over. I have a neurological condition it affected.

I would say to urgently contact your rheumatology department and list your symptoms. Perhaps speak to your consultants Secretary?

My hospital has a rheumatology patient help line? Perhaps this is an option for you too?

From your description,:your symptoms sound severe enough to merit a trip to A & E to me.

I hope you get some relief soon. My heart goes out to you.

Thank you so much for responding. To be frank no I do not feel I can work with the Rheumatologist. I think he made a mistake putting me on 600 mg Hydroxychloroquine and then was petulant and rude when I got the problem with my eyes. Had he said I am sorry that you had that problem I would have said that is ok you were trying to help me. Instead he attacked me saying the only thing wrong with me was Fibromyalgia and other Rheumatologist were talking “ crap”. He said if you get very ill you will prove me wrong?? I have been to an emergency appointment as a temporary patient this morning. She has doubled my morphine, said strict bed rest ,took bloods and is contact my practice back home. If I am no better tomorrow I will be admitted to hospital as I have a fever, my blood pressure is up and the pain and the rash is now at hip level.

glad you went, hope you feel better soon, but if not go back . take care. xx

Hello CecilyParsley ,

Thank goodness you àre being looked after. It is imperative that we trust our doctors ability otherwise the experience is too hideous for words.

I feel it is important you should urgently set your rhestraight by clearly documenting your symptoms. Either in person or via your G.P. Clearly he was absolutely wrong to assume you just have fibromyalgia.

Doctor s are not gods. They are fallible . I think those of us long term health conditions have to play the long game and expect to have to challenge and question everything we are told by doctors. Treatment is a partnership between all parties.

Have you considered complaining to the hospitals Pals group? I would definitely tell your specialist that your symptoms are way beyond fibromyalgia?

I hope you quickly find a new consultant who can listen and not just pronounce judgement?

please take care and rest.

Thank you, I tried to tell him, he did not want to listen. He even said I had hysterically invented the macular oedema. When both myself and my carer challenged this and said we saw the scan images he said it was just an optician and clearly they know nothing? There is no PAL’s in Wales and sadly we have three unfilled Rheumatology posts which was why I ended up seeing this man. His attitude was whether you like it or not you have Fibromyalgia. He said I see people like you every so often, always sick, getting referred everywhere and nothing is ever found. He woukd simply not listen when I told him that two separate Rheumatologist had diagnosed Lupus and Bechets that it had been confirmed by St Thomas’s Lupus Unit.He shrugged and said you have had crap advice. There is no working with him I just hope the posts are filled so that I get someone more professional with less ego

This is all I get all the time and therefore no help , 🙏

What gets me is they say fibro mimics things ms lupus etc so symptoms IF fibro mimic why no help but poo pooed.

Rheumatologists Luke yours and mine need to look clinically but they don’t, I don’t feel I have ever been looked at clinically and haven’t been listened to, just thrown questions and bloods are not guarantee so need to look. I cannot believe my forearm and fingers solid and X-ray ordered then told normal I say what’s causing it they say don’t know. Yet they were concerned enough to X-ray and warrant testing but when no answer from X-ray say fibro. Not good enough, tell me no inflammation yet face hands feet chest swollen? Personally I’ve been made feel like it is a diagnosis of not immediate answer go away too complicated and costly to investigate’

I wish they could feel how ill I feel then they might try, fibro can’t be invisible illness if I have so many visible symptoms😡

So sick of it, you must be too 🙏

Bless you I understand completely. It is so demoralising. I truly hope you and I both get doctors who have the compassion and professional integrity to help. They are out there, over the years I have had so many good doctors. My current Rheumatologist has set me back years. Good luck xx

Same here, absolutely awful experience. I thought and really expected with all symptoms Nd visible I would clearly get an answer infact it was a relief to get referral to rheumy, that’s over two years ago and turns out to be the worst thing, just left with more questions and worse health and frustration. Don’t know what it is but it’s also the manner or lack of in the ones I see, it’s like total disinterest with yet another patient that don’t fit in go would have been ok if stuck to guns but she just goes with rheumy and I’m sure she disagrees.

I sincerely hope we can both get some answers 🙏

Thinking of you


You too. The fight goes on xx

Hi CecilyParsley. I can't give any advice as I'm new to all this but this just doesn't sound right at all! I would think you need to see a doctor. Also can you call your rheumatology clinic and inform them of your symptoms? They need to know all this asap. I'm so sorry your lovely holiday is being ruined by this. Hopefully someone more knowledgeable than me will post soon. Or you will have got some help from a doctor. S

CecilyParsley in reply to Salzer

Thank you so much. I really appreciate your responding to me

Salzer in reply to CecilyParsley

I'm so glad you went to the doctor. And so sorry your holiday has turned into this. And that rheumatologist!! Crazy! Look after yourself and wishing you all the best x

CecilyParsley in reply to Salzer

Thank you so much xx

Please go to A&E - you need a specialist to look at what is going on.

Does it look like the first 2 pictures here:

If so, cellulitis can be life threatening and you must get medical advice and treatment immediately.

CecilyParsley in reply to PMRpro

I have been to a GP now, she was very concerned. I am to have bed rest and take 2000 mg antibiotics plus double my morphine. I have to return to the practice at 8.30 tomorrow morning and if I am no better she wants me admitted. I feel dreadful. Joint pain, high temperature, blood pressure raised. I can hardly walk. It has progressed to my upper thighs now and it is starting to appear on my hips. I am shivering badly so I was worried about sepsis. She said that remains a possibility. The nurse who took my bloods said, you poor thing you have SLE. I asked her how she knew and she said because her husband was diagnosed six years ago and the rash looks exactly like his? This sort of burned look was how it all started for me so I guess I need to wait for the blood results. Thank you for the advice, much appreciated

If they can give you any reports from your visits i would take them to show your rhumy at home. xx

PMRpro in reply to CecilyParsley

Does the GP know it is progressing? Tell her about any changes like that.

Do hope the abx start to work soon.

CecilyParsley in reply to PMRpro

Yes I told her it is spreading, now on my hips, buttocks and back. I feel as if I have been dipped in hot oil but the bone pain and nerve type pain is horrendous.She responded this is just too much for me to deal with??

baba in reply to CecilyParsley

You should be in hospital..

CecilyParsley in reply to baba

I suspect I will be tomorrow, I cannot bend my ankles at all now

baba in reply to CecilyParsley

I wouldn't wait till tomorrow.

Wishing you well..

CecilyParsley in reply to baba

Thank you so much

PMRpro in reply to baba

Me neither. Better to get there in the evening than the middle of the night - as I was told very forcibly here by a surgeon once.

I would inform your rheumy nurse and the rhuemologist and i would also go to a and e. Sending a hug , lOU XX

Thank you Louise. I feel so dreadful and I have not got the Rheumatology helpline with me. Trust me to spoil our holiday 😞xx

your doing the best you can with poor rheumy care. xx

Hi. Please listen to the other posts and get help asap - A and E if necessary. This sounds serious stuff. xxx

CecilyParsley in reply to MEGS53

Thank you so much I have been to the GP here now, had bloods , by, temperature etc. I am on bed rest, antibiotics, double morphine and back tomorrow xx

MEGS53 in reply to CecilyParsley

Good! I'm so relieved you sort help. Take care and rest up. xxxx

MEGS53 in reply to MEGS53

I mean sought....! BTW, your rheumy needs to learn to listen, BIG TIME! He should be ashamed of himself. xxx

I hope you get better x

Thank you so much x

I read your post this morning n wholeheartedly agreed with all the comments..I'm so glad that u have seen a doctor n that a plans in place for u 💐💐

Things can go awry anytime with us autoimmuners..the main thing now is that u get medical attention as needed..and concentrate on getting up n I hope u feel better very soon. 🤗🤗xx

Thank you so much xx

Your symptoms are concerning. I can hear how much pain you are in. I think you should watch for any new symptoms and take your temperature and blood pressure before seeing the doctor in the morning. Don’t hesitate to go to the A & E if you worsen. That is what they are there for.

Hope the antibiotics start to work and you feel better soon.

Thank you Kay. I have been to see a different GP today. My temperature has gone down significantly and although it is still high, I am no longer shivering. My BP remains high but when you are in pain I guess that is normal. My blood work shows that I have an infection. MyCRP levels are 50 but I tested negative for sepsis. The advice is bed rest, continue with the antibiotics at 500 mg four times daily and take 20 mg morphine twice daily. If my rash continues to spread or I feel worse I am to go to A&E.

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