Lupas rash butterfly? Wondering if any one can help, share advice or has similar to this?

[Danimccrea]

Hi all I hope you are all keeping well. So I have this rash on my cheeks it's less noticeable morning, come mid afternoon i can feel it coming come evening very red and hot like sunburn, both cheeks, along with this my symptoms of fatigue joint bone pain is multiplied, it feels as is some one is sucking the life right out of me, and I've nothing left. I'm struggling to cope the pain is sureal, I'm 35 I was diagnosed with nephritus July 2022 after an awful flare? I'm under nephrologist and see him monthly undergoing multiple tests to find what is attacking my kidneys. The rash is fairly new I would get it but mild, now its everyday since around Christmas, I'm just curious does any one else suffer these symptoms come mid afternoon until late evening when you sleep. Any help/advice would be great. Thank you 😊

[Tiggywoos]

hi lovely

So sorry to hear how dreadful you feel and I can relate . Blooming rash has a mind of its own .. I can wake up with it and it normally gets worse as day goes on especially under artificial lights or driving in car . It definitely feels so hot sometimes like you’ve been burned . I found hydroxychloroquinine helped it a bit after 6 months but it still reappears . I also get swelling on face above brows around eyes and cheeks (especially in morning) thought I’d mention all this things if it helps you to feel less alone with it 😊

The bone 🦴 pain is horrid isn’t it 😖.. like someone sawing them off . Ironically I find gently rubbing the body part is only thing that helps a little bit and sometimes magnesium spray .

I don’t have nephritis so I can’t comment but I know you’ll get some lovely replies .

Take care 😘x

[Danimccrea in reply to Tiggywoos]

Thank you for your reply and advice I also have puffy eyes cheeks on a morning same as you, I'm at hospital this week and have made a photo log of my face rash to show consultant this time around. So hopefully may get somewhere also waiting on bone marrow biopsy results🤞. You take care too. Lots of love 🙂😘

[Tiggywoos in reply to Danimccrea]

are you on hydroxy? So good to keep pics.. I print mine off in asds too as they are clearer xx good luck 🤞 this week 😘

[Danimccrea in reply to Tiggywoos]

I'm on no meds so suffering this awfull pain and all the rest of it 😥 he won't start treatment as they have not found underlying cause yet? So I'm hoping maybe more answers from my tests this week. My lupus tests were negative and not constitant enough last year 🙈 alltough I feel they defiantly are lately I'm in a constant flare at minute not major but feeling very poorly 24/7 for months now. 😢

[Tiggywoos in reply to Danimccrea]

jeeze I’m so sorry . Are you under care or been referred to rheumatologist? Ps I’m not medically trained but you learn so much when you’re Ill and learn loads from here

[Danimccrea in reply to Tiggywoos]

I seen a rheumatologist around 3 years ago but it was during covid he wasn't great that was at the beginning of all my problems really was diagnosed with fibromyalgia so I just left it at that but everything had progressively become worse over time.

[Tiggywoos in reply to Danimccrea]

I’m sorry 😞. Such a familiar story 🙄. I hate the word “journey” when it comes to illnesses but sadly this one is . I guess one thing at a time so when you get your results this week you can make a plan . Please keep us posted and ask questions as people on this forum are so lovely and someone always replies xx

Ps you’re not alone 😘

[Danimccrea in reply to Tiggywoos]

Thank you so much ☺ 💓 it's nice to talk with people with similar situations as many do not understand. Lots of love xxx

[Tiggywoos in reply to Danimccrea]

good that they are trying to get to bottom of it and I guess it’s risky to start drugs until they know what’s going on 😘

[KayHimm]

That rash is concerning considering you had nephritis at one time. Is it possible to get to your GP right away for a urinalysis and blood tests? If the rash is lupus related, it could mean you are in a flare.

Best of luck.

xxK

[Danimccrea in reply to KayHimm]

Thank you for your reply, I'm seing my consultant nephrologist on Friday coming so I have routine bloods and urinalysis then, I did have my bloods done with g.p last week and they were borderline. I do believe I'm in a flare as I'm struggling massively all symptoms currently. 😢 hopefully the hospital will help on Friday. 🤞they are monitoring me monthly but everything has progressively become worse. Lots of love ❤

[KayHimm in reply to Danimccrea]

Glad to hear that. They are keeping an eye on you. It is important both doctors know about your rash and other symptoms. Keep in touch and best of luck.

Xxk

[Turquoise-1]

Hello Danimccrea,

I have exactly the same rash; diagnosed as having SLE June 2022 by Rheumatology. GP also referred me to a Dermatologist due to other skin & scalp sores/rashes/lesions. Recently had 3 x skin biopsies to determine if rashes are caused by Lupus.

My GP said that a Dermatologist can diagnose Lupus from the biopsies but also referred me to Rheumatology as they deal with the medication & control of the disease side of things. Ask your GP for referral to both - my bloods are variable & not always Lupus positive despite lots of symptoms 🤷🏻‍♀️

Unfortunately for me I’ve had severe adverse reactions (including Anaphylaxis) to the 3 medications I’ve tried specifically for Lupus. (Hydroxychloroquine, Prednisolone & Depo-Medrone Steroid injection). I’m currently not taking any Lupus meds apart from various analgesics, (Nefopam, Naproxen, Paracetamol), for joint pain & several orthopaedic problems. Discussed other meds last week with Lupus Nurse but awaiting biopsy results.

I find Ibuprofen Gel (10% prescription only med), is really effective to rub on any hurting body parts. 🤕

I stay out of the sun, wear a hat when outdoors + factor 50SPF, can’t do much when indoors - rash still appears ….

Hang in there, as awful as it is for you 🌼

[Danimccrea in reply to Turquoise-1]

Thank you for your advice I see my consultant Friday coming so I will mention referrals to him, he's a nephrologist has refered me to hematology dept were I had a bone marrow biopsy end of Jan still waiting results as I have a evovated kappa light chain also. I'm hoping to have more info from that, it's getting used to all the tests and meanings as I'm very new here, I'm grateful for your reply and advice thank you kindly 😊

[LuluM25]

Hi Dani, I recognise your symptoms and do feel for you. I’m another sufferer of the facial rash that gets more red and heated later in the day and appreciate reading everyone’s comments. This has only happened to me in recent years although I have been lupus diagnosed for over 30 years. I had a very nasty sun induced (well, we think so) rash and sores on my face and upper body in 2018 and my skin has never totally recovered. So my piece of advice would be to monitor, photos good idea, don’t ignore it but mention to GP and consultant and ask to see dermatologist if it persists and gets worse. My very bad skin rash lasted for 7 months and needed high dose Prednisolone to calm it down. I wouldn’t want anyone to go through the same. Best wishes to you.

[Danimccrea in reply to LuluM25]

Thank you its great to here your story helps so much as I feel so alone, it feels an awful long journey at the minute bit it's great to have a little support from people in similar situations who understand 😘

[kimc]

Hi Dani, I first dx with lupus after extremely facial, body rash and body felt very warm when I spent in garden for 4 hours at noon (when UV is highest of the day). I am now resting more often, stay out of the sun light, the heat, control the stress and only do what I can to reduce the symptoms as less as possible.

[Danimccrea in reply to kimc]

Thank you for your advice I will most certainly try anything to help reduce my symptoms. 😍

[Hoofprints]

Hi there. Sorry to hear you are having a terrible time of it. Hang on in there!

Have you actually been diagnosed with lupus? Have they tested your blood and found you to be ANCA positive?

Just wanted to say that if they don't find your bloods to be typically positive for lupus, please check that they have considered the various forms of vasculitis as many types can attack the kidneys and cause lupus like symptoms and rashes.

In particular, make sure they test you for the anti-C1q antibody. This often gets overlooked but can be responsible for a lupus like form of primary vasculitis, as well as being secondary to other autoimmune conditions (including lupus).

It might be helpful to have a quick look at the

vasculitis.org.uk website for further information. It will explain it a lot better than I can!

Good luck 🍀

[Danimccrea in reply to Hoofprints]

So no I haven't been diagnosed with lupus, my consultant thought it may be lupus but my kidney biopsy showed otherwise I've been having various testing over a year and it my tests come back negative for lupus. I will ask about testing for anti-C1q tommrow I'm at hospital for routine appointment. Thank you for that and also the information regarding vasculitis that seems interesting I havnt looked into properly, so interested to have a good read up on this 😊 many thanks for your message. Lots of love ❤

[Hoofprints in reply to Danimccrea]

You are most welcome. I hope that your hospital appointment goes well and do investigate the vasculitis angle through your doctors and the charity itself.Good luck 🍀🤞