Hi,
Sorry for the questions but this is so new to me. I have cutaneous lupus, my skin is horrendously red and sore with a very swollen face. My question is does anyone else has this lupus and have sore limbs too or does this mean I have another type of lupus. I have angry red broken skin on my hands, wrists and elbows but my arms feel so weak & tender . Could this just be due to the skin?
Thanks you all & wishing wellness x
Certainly these are overlapping symptoms. I would definitely talk with your doctor to make sure you don’t have a neck or wrist nerve injury but yep, you’re well within the autoimmune world.
Sorry to say that this sounds like all part of a flare & best to see a specialist & hopefully if your not on meds you need to be asap to get it under control. Document everything & take photos really helpful... ml
I agree with maggielee..it does sound like your having a flare unfortunately
I have SCLE n that's what happens to me..even though they say its skin n usually doesn't affect other organs..I believe that it does..when I'm flaring all my joints become stiff n the aching n weakness is horrendous!! And let's face it..skin is everywhere..it's a very large organ in itself!! I really feel for u Woods..gentle cyber hug for u 🤗🤗
Never apologise for asking questions on here.. we're all in the same boat n by asking for advice we r able to get some guidance on how to manage n live with lupus!!
U don't mention any doctor involvement but u have been diagnosed with cutaneous lupus so I'm assuming that u have been referred to a dermatologist..have u seen dermy yet? R u on any medications? The first drug we r usually prescribed is hydroxychloroquine n that's a constant with me ..I've been on it for two years n take it even when I'm not flaring.
When everything kicks off I usually feel very unwell..flu like..joints hurt..skin is raging..cracked n weeping..I can sleep for long periods of time..get depressed n tearful..no appetite n a few other things
Together with my dermy we have kinda reached a treatment regime that seems to work..it's all trial n error. Now when I flare up I increase prednisolone which is a steroid..I'm on it all the time now..lower dose when I'm ok n then up it when symptoms worsen.
Do u have any creams to use on your skin?? Again steroid ointments r what I have..different strengths so I can use them according to what my skin is doing on any given day..do get back to me on this if your able n I can go into more detail for u. I have Dermol lotion as well which is easy to apply n relieves any itching n mosturises the skin!!
Water n me no longer get on..I have wierd reactions to water!! If u r showering or bathing try not to have hot bath or shower..Luke warm water is better for your skin.
I find it useful to keep a symptoms diary..include all symptoms n make notes of weather n diet sometimes helps us to determine what triggers a flare.. we're all autoimmunity diseases but each of us is unique so by keeping a diary it helps me to understand triggers for me personally..also if u can take pics of skin involvement..every appt with my dermy we have a look at my photo album!!!
R u taking any pain relief? It might be that u need something stronger..is your GP involved in your care? Now look..it's me whose asking all the questions!!! 😹
I'll leave it there for now..I really do feel for u..I know what's it's like..my skin cracks on my hands n feet as well n it's no picnic!! Sometimes I can't use my hands at all..so I definitely understand where you're coming from..u are not alone!! Xx
Thanks very much for replying and for your help. I find this forum so helpful. I have been seen by the lead consultant at the hospital after I saw the same dermatology doctor twice. She misdiagnosed me with two other things before I asked to see someone else as I had no confidence in her, because of the time that took my skin and the swelling got really bad before the consultant said he strongly believed it to be cutaneous lupus. That was a week and a half ago. I am still waiting for my bloods to come back but he took a biopsy and rushed the results through so I he rang me with them less than a week after it had been taken and said it presented as lupus. He started my on the anti malaria drug 200mg which I have taken for a week and a half and gave me dermovate and a topical solution which initially burns when you use it. I have used the dermovate on my face but now have to stop after 5 days. I have been using the Dermol and also epimax. I am going to see him on Friday and he intends to keep my medication the same I believe. The weakness in my arms which I feel the come from the elbows has happened over the last few days. My elbows are red with sores on them due to cracking. I used to love a hot bath but I cannot have the water temperature like I used to.
I am currently off work due to the facial redness and swelling and I am unsure how long it will take to settle down.
I am not on any pain relief at the moment and I haven’t seen the G.P since the consultant. I have seen several G.Ps since my skin first broke out and none of the said they thought it was lupus. I tried loads of different creams at first. I have also been taking photos. X
Be very careful with the dermovate I was prescribed it and told to keep using it on rashes but it has thinned the skin on my arms i now have skin like paper on my forearms that burst and bleed under the skin now!
Well it's good that you've finally got a diagnosis..u will probably find GP more helpful now they know what's wrong.. unfortunately there r many people on here who have had to suffer for years before being investigated for lupus..myself included!! I'm not a doc but I can tell u a couple of things that have helped me.
I don't get the rash on my face..it's the only place not affected n I am very thankful for that..I do get some dry skin which I apply Dermol lotion to..I'm not sure that I would use dermovate in facial skin..it's a strong steroid cream n there are gentler ones. The Dermol lotion helps to cool facial inflammation when I do have some mild skin issues there. Do u use Dermol lotion to wash with as well?
The hydroxy can be increased..I'm on 400mgs per day..I take it morning n evening..but u really need to speak to a doctor. My GP is really good n she liases with my dermy in-between appts if I'm flaring..obviously I know I'm lucky in that respect!! Your GP can also prescribe u pain relief..if OTC paracetamol or ibuprofen isn't helping u could ask for stronger from your GP..cocodamol perhaps..I'm on tramadol..but these meds r addictive n only used when necessary
My dermy was lucky enough to see me in full flare..n he looked very concerned..leapt into action..n increased steroids..put me on immune suppressant straight away..do u have any way of contacting your consultant via his secretary..or any lupus nurse involvement?
My dermy also gave me a great tip for my hands..put dermovate on affected skin n then wear a pair of non powdered vinyl gloves n keep them on all night..I said won't that make my hands sweat n he said yes that's what we want..I was sceptical at first..but it blooming well works!! When I take the gloves off in the morning it my skin looks like I've been soaking in the bath all night..but once they get some air I get a lot of relief!! I don't do it all the time..just when they r bad ..u will find what works for u best!!
The hydroxy u have been taking takes a long time to build up in the system so as u have only been taking it for a week or two u won't be getting the full effect anyway so he may put u on steroids..that really does depend on the doc though..some do..some don't!!
I'm not surprised your off work..please don't push yourself to go back too quickly..there r paybacks with lupus..u really do have to take good care of yourself..stress is a driving force so try not to get too stressed...easier said than done I know..but it's important!!
It sounds to me like your consultant is very competent n is doing all the things necessary to get your flare under control..good your taking photos..I find it helpful to jot down any questions I want to ask beforehand n take my list into the appt because it can be a bit confusing..BUT u have us lot here n u can ask any questions as u go along..this forum is fab!!! Xx
Thanks for the glove tip! I will try that one. I have stopped the dermovate on my face now, the creams that weren’t as strong weren’t touching it. I just used it for 5 days. Yes I use the Dermol to wash with, as a cleanser and moisturiser x
My neck becomes weak and may face muscles feel well tired jaw/teeth ache throb xxx
Hi. I also get teeth/ gum ache. My dentist says it's related to inflammation of the tendons which keep the teeth in place. Do you get sinusitis? I'm told this is also affects teeth/ gum ache. xxx
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