Lupus rash?

[Dontknowwhattodo]

I have suffered many different symptoms for a period approaching 15 years. About 4 years ago my GP said that I had too many symptoms across multiple systems and there was nothing more he could do for me. He referred me to the hospital but I’m still waiting four years down the line. I discussed Lupus with him at the time, as two other family members have Lupus, but he told me I did not have Lupus as did not have a rash. My symptoms are becoming more frequent and I am currently having more bad days than good. I have multiple skin rashes, in addition to many other symptoms. I have included a photograph - does this look like Lupus?

[Treetop33]

Evidently you know something is wrong and your doctor is incorrect. I have lupus without the butterfly rash and diagnosis is usually blood tests and symptoms. You may also have another autoimmune condition - who knows? Having other family members with lupus is also a risk-factor. You perhaps could change GPs? You need some blood tests on autoantibodies, and a referral. If you have money, the London Lupus Centre is very helpful (I see Dr Kaul occasionally, just to confirm there are rational human beings out there!).

[Dontknowwhattodo in reply to Treetop33]

Thank you for your reply. I have so many different symptoms and the GP tries to treat them all separately but seems unwilling to link everything together. Unfortunately, I’m in Northern Ireland and waiting lists here are ridiculous.

[Treetop33 in reply to Dontknowwhattodo]

They are in England too, and rationing is part of the problem. The other one is that GPs still don't know a lot about autoimmune conditions unless you get really lucky. I was undiagnosed for years despite having an aunt with lupus. Then I had a flare up and a GP who happened to have a lot of patients with those kinds of conditions. So he did a full blood test.

[Hyponanna]

the first thing you need is a blood test for rheumatoid factor and antibodies. It took me years to get diagnosed and in the end after GPs failed to diagnose I went to the London Lupus .centre as a private patient.. This happened because I had a raised and prominent red scaly rash after coming back from Greece. The sun had got to me. GP said it was a sun allergy….gave me steroid skin cream which I didn’t use. I rang the lupus healthline. I was already diagnosed with Sjogrens Syndrome. Had blood tests which were positive and . I was referred to local hospital where I have regular yearly appointments, I am Also a coeliac and have hypothyroidism, ask for a rheumatoid factor blood test from your GP especially if you have any joint pain. Good luck.

[Dontknowwhattodo in reply to Hyponanna]

I have lots of joint pain and many other symptoms which suggest lupus or another autoimmune condition. I’m currently collecting photographs and recording symptoms so that I can go back to the GP. Thanks for your support!

[Mctd]

Not sure that it is a lupus rash, but you need to keep pushing as there is definitely something wrong. After several years, I was diagnosed with UCTD and secondary Fybromyalgia. I too have a rash on my face and my doctor told me it was rosacea, my rheumatologist said it was lupus rash... I have now been diagnosed with Sjogrens and have a myriad of symptoms, it's really frustrating and sometimes I question myself, but I know I'm not imagining things...

[Dontknowwhattodo in reply to Mctd]

The rash doesn’t always look like that. It is sometimes more like the butterfly rash, appearing on my upper cheeks. I also have other skin rashes on my chest and arms, joint pain, extreme fatigue, ulcers and lots of other things. I just feel that every time I go to the GP, he just thinks it is all in my head…

[Chris21]

Hi dontknowwhat to do,

Who did your GP refer you to 4 years ago? The referral has either got lost in the system or was never sent. you could ring appointments at the hospital to see if they can find it on the system.

if your main concern is various rashes, then ask for a referral to dermatology, (my area is approx 52 weeks wait for new referral) or if your main concern is joint pain with fatique and various symptoms ask for referral to rheumatology (can take approx 48 weeks) unfortunately this is the way the nhs is today, you also need to keep chasing the hospital once a letter has been sent and if symptoms get worse you could ask GP to expedite referral.

in the meantime keep a diary of symptoms and photos of rashes. Also as others have mentioned and if not done before ask for blood tests to be done or go private if its possible.

it can be a very frustrating journey when you feel unwell and the GP doesnt seem to believe you. keep pushing until you get an answer. 🙂

[Dontknowwhattodo in reply to Chris21]

Thanks for your reply. Unfortunately, I’m in Northern Ireland and that is how long are waiting lists are. The last time I rang the hospital they were dealing with referrals that they had received 9 months before mine, so I’m hoping it will be my turn soon. The rash is only one of my many symptoms - from joint pain, severe fatigue to ulcers and the surface peeling off the roof and sides of my mouth.!

[Chris21 in reply to Dontknowwhattodo]

gosh! and i thought i was waiting a long time for appointments. Hope its your turn soon! 🤞x

[soul22 in reply to Dontknowwhattodo]

No way that's ridiculous but I guess less hospitals long wait bless you

[soul22]

Hi nice to meet you

Firstly it doesn't take four years to see a rheumatology consultant or dermatologist

Your go hasn't done referral or it's been lost is ring hospital yourself to chase that.

Secondly yours could be cuteanoues lupus with so many rashes I'm not a Dr.

You need antibody blood tests

Consultation and if hasn't a auto immune dermatologist special Dr all best

[Dontknowwhattodo in reply to soul22]

Thanks for your reply. I’m in Northern Ireland - our waiting lists are ridiculous. I think I definitely need the blood tests. I may have to look into going private.

[StriatedCaracara]

I was told to ask my GP for an AntiNuclear Antibody (ANA) test . If positive this is usually extended to include ENA screen and test for anti double stranded DNA.

[Dontknowwhattodo in reply to StriatedCaracara]

Thank you for the info about the blood tests needed. I’m going to record symptoms and then go back and ask for the tests.

[Milkybarkid]

I have had Lupus since around 1993 when it was diagnosed, although I had my first all over rash on my 21st birthday. With three 'Hydroxi' tablets a week it is now dormant. What I do get though is regular rashes. First was caused by some new eyebrow wax, which must have taken three weeks to go. Next was going out in the sun for around 8 minutes without protection, to see my sister's new bull (she has a small farm). It took me six months to get rid of the rashes with the aid of Avena products, which I put on every night and make sure I've got a 50 SPF foundation makeup. It is possible that you have caught the sun and it has set off an allergy and they can be annoying beggars when something sets them off.