Malar rash? Or somthing else?

[BabyOleg]

Does anyone know if this looks like a Malar rash x

[Lolliesandcakes]

Thats how my rash looks when I have a flare. I dont have it constantly just before a flare up tho. It always look like Ive had too much sun across my face. Hope you are doing ok x

[BabyOleg in reply to Lolliesandcakes]

That’s exactly what I thought it was originally, I was like oh how strange iv burnt all my face except it didn’t feel like sunburn or hurt. It was there for a day or two then faded away.

[JCZW]

Morning BabyOleg my face goes like that when my lupus is causing me issues which at the moment is most of the time. I also get it over my neck and most of my body. Hope that helps. Xx

[BabyOleg in reply to JCZW]

I am suffering terrible at the moment. I haven’t slept properly for days because of the itching all over my body. Yeh I get it across my neck, face and on my forearms. Hope your ok and it’s not causing to many problems for you atm x

[Lolliesandcakes]

Ugh the itching is the worst!!!!

[BabyOleg]

It really is!!

[KayHimm]

The rash can be really hard to distinguish with other conditions like rosacea. It is good you have a photo. The one thing they note - have had this experience - is whether it is around your nose. In your case it looks like the area around your nose is not affected. That may even be what gave it the appearance of a butterfly when originally described.

The other thing that is significant is that the rash stayed for two days. I remember showing a similar (not to trained eyes) rash to a dermatologist and he said a rash that is gone by morning was not significant.

It sounds like you are having extensive testing. Make sure you show the doctors this photo.

We can only give you our experiences here.

What are your other symptoms?

xk

[BabyOleg in reply to KayHimm]

Hey, so my other symptoms are Swollen hands and sore joints in fingers and wrists

Mouth ulcers

Nose sores

Fatigue

Rashes

Swollen oedematous eye lid intermittently

Blood work shoes kidneys are functioning at 62%

Liver was inflamed but now settled back down

Folate levels were 1.8 now resolved with meds.

Headaches

The list goes on... lol

[KayHimm in reply to BabyOleg]

In my experience doctors tend to separate between the non-specific and the specific. The non-specific make our lives miserable but don’t help them much because they occur in many or most illnesses.

You seem to have quite a few specific symptoms. A rheumatologist or dermatologist can tell the difference between lupus ulcers and canker sores. Same with your rash.

What do they say about your kidneys? Do you see a nephrologist?

The rheumatologist has likely noted the type of swelling in your joints.

Have you been told if ANA was positive?

xk

[BabyOleg in reply to KayHimm]

Ana was negative, so that’s why the doctor has left me for a year without treating me, they said it has to be the rheumatologist desision now. My doctor adamant they know what’s wrong but say there not allowed to disgnose. Not sure why. So I have rheumatology on Monday after waiting over 7 months for an appointment , I take 1000mg naproxen, tramadol, anti histamines, steroid creams, and that’s about it to get me through .. urmm kidneys There not doing anything about atm there waiting. I was having bloods done every week to monitor them, they kept getting worse each week, and then on my last blood test (6th) they started getting better and my kidney function came up to 70% .. they said there happy with that and stopped doing bloods. No idea what there doing now lol. Hopefully there doing well, and not deteriorating

[KayHimm in reply to BabyOleg]

I see. Makes sense. Your GP is right to monitor you so carefully. Has he seen that rash?

My friend just told me a story about a teenager he had in the ICU with lung issues. He did a urinalysis that was abnormal. He ran an ANA - not a common test for an ICU doctor - as well as getting a rheumatology consult. Her ANA was negative. There was disagreement about whether it was lupus or not, (nephrologist started steroids) and somehow she wasn’t followed by the nephrologists at the tertiary care center where he sent her. She got sick again, kidneys were biopsied and, yes, found to have lupus kidney disease.

Seven months just sounds too long to wait. The rheumatologist will still be in the same dilemma because of the negative ANA.

We can only advise you based on our experience. If I were in your position, I would try to see a nephrologist privately even if that means traveling. They would have all of your tests and could at least give you reassurance that waiting seven months is okay. Plus they may end up making the diagnose anyway as with my friend’s patient.

[BabyOleg in reply to KayHimm]

Yeh they have seen all my rashes, I thought maybe a dermatologist would be a good idea, never thought about my kidneys really, maybe because they said they were happy with the last result I just accepted that x I don’t really have the money to go private it’s expensive isn’t it x

[KayHimm in reply to BabyOleg]

Maybe others would know. But it might be only your visit because you have lots of history with labs. A dermatologist could say your rash is consistent with lupus but would probably not give final diagnosis.

The issue is whether you need immediate treatment. Could you ask your GP? If he can say for sure they wouldn’t be treating kidney disease, then that would be fine.

It is so complicated.

Maybe others will have a suggestion. The waits are long in parts of the UK.

[BabyOleg in reply to KayHimm]

Well I guess I will see what happens Monday and take it from there x fingers crossed for a positive appointment x I think the thing I’m struggling the most with atm is the lack of sleep through itching through the night - that’s having a knock on effect with everything else

[KayHimm in reply to BabyOleg]

Oh, I misread. I thought you had to wait seven months to see the rheumatologist. That is great you have an evaluation Monday. They know what to do. It will be complicated if your ANA is still negative. But with your rash and other issues, they will do whatever needs to be done.

So no need to worry. Let us know how it goes.

xk

[BabyOleg in reply to KayHimm]

Haha yes I have waited 7 months for this so you can imagine after 7 months of putting up with all these symptoms I’m excited to finally see someone. Probably have too high expectations but I guess it’s better to be overly positive than completely negative. Ovcourse I will let you know how it goes x

[KayHimm in reply to BabyOleg]

Yes - seven months is too long. Thought of one thing. Tell him your GP mentioned liver and kidney issues. Ask if he is concerned.

[BabyOleg in reply to KayHimm]

Yeh that’s a good idea, I did see my referral which did have my blood results included but incase they don’t actually look at them I will mention it as I’m quite a Healthy person normally so I can’t understand why my kidneys would be bad

[BabyOleg]

Do you have any advice for Monday? I mean I would definatly rather not have lupus but if I do it would be helpful to know what I can do to speed things up or help them help me

[KayHimm in reply to BabyOleg]

Mainly glad to hear your appointment is Monday! I was concerned about your waiting seven months. That is why I mentioned going to a kidney specialist privately.

The main thing is to tell them your experience in your own words. They need to hear how things have developed - eg started feeling tired, then noticed swelling in my wrists etc. They will do a thorough exam, looking for signs of inflammation and probably stuff we don’t know about.

Take that photo of your rash with you.

Note any low grade fevers.

Best of luck. I know you will be taken seriously.

xk