LUPUS RASH?

[jellynpain]

Hi everyone,

I have many Lupus signs, though diagnosed with CFS/ME and Fibro.

I have rashing over the front of my neck. It is at its worst the more poorly days, but pretty much there to some degree all the time. Had odd occasions when it is faintly over brow of nose.

My ana test comes back as 'normal range'.

I have extreme fatigue mobility problems (fluctuating) & very bad light skin sensitivity which flares hugely, all over in strong sunlight (sometimes not very strong sunlight).... among other symptoms.

My question is does a Lupus rash show across the front of the throat/high neck?

Xx

[flossy1]

Hi

I don't know whether you have lupus or not but to answers your question I flair a lot across my throat/ neck. X

[jellynpain in reply to flossy1]

Hi Flossy1,

Thank you for your reply.

Do you mind me asking how you were diagnosed?

My ana comes up normal.

Been diagnosed CFS/ME, FM & atrophy thyroid/micro pituitary adenoma but to be honest they don't account for the dashing & the symptoms all seem to overlap with each other (Inc. Lupus).

Got to the stage that I don't care re the name of the condition, more that a correct diagnose as it may be medical helped.

My biggest problem is poor mobility & pain (rushing frequent, light allergy whenever in sunlight).

Hope your day is ok.

X

Any info appreciated.

[Paul_Howard Partner LUPUS UK]

Hi jellynpain,

It might be helpful for you to get a referral to a specialist lupus clinic to try and help you get a diagnosis? They are often able to diagnose cases that are seronegtive (negative blood tests). If you let me know whereabouts in the country you are then I can tell you which centre might be closest to you.

In addition, if you require more information about how lupus is diagnosed, I'd be happy to send you one of our free information packs. Just send me a private message or email [e-mail] with your name and address.

[jellynpain in reply to Paul_Howard]

Hi Paul,

Thank you for your reply.

I am in the South East of Kent, near Canterbury. I would be very grateful of info on where my nearest clinic is.

Would my gp need to refer me?

I'm diagnosed with CFS/ME but I am sceptical about this. I know symptoms are overlapping to Lupus & thyroid problems. My dashing and extreme light sensitivity would fit Lupus and other problems. I also have thyroid & pituitary stuff.

Presently left to get on with it I want to get to the bottom of it in the hope some help may be possible .

Xx

[Paul_Howard Partner LUPUS UK in reply to jellynpain]

OK. Unfortunately I'm not aware of any lupus specialists in Kent, so I believe your next clinic would be at UCLH (London). Prof Isenberg is the head of the clinic there.

Yes, you would need to ask your GP to refer you there. I would hope that they wouldn't have any qualms with this as you are entitled to a second opinion within the NHS and you deserve an explanation for all your symptoms.

[jellynpain in reply to Paul_Howard]

Hi Paul,

Thank you so much. I am going to request this referral to my gp. I may have problems as he has to get agreement from Commissioners for any referral outside my area (madness & all about funding).

I need to get to the true problem as the effects on me day to day are too much to just leave.

Thank you again.

X

[Paul_Howard Partner LUPUS UK in reply to jellynpain]

You're within your rights to see an NHS doctor in any part of England, so hopefully there won't be any problems. Please let us know how you get on.

[jellynpain in reply to Paul_Howard]

Hi again,

I shall remember that and state if any problems for a referral, thank you.

I will let you know.

X

[onamission in reply to Paul_Howard]

Hi Paul do you know if Shropshire has a Lupus specialist

[Paul_Howard Partner LUPUS UK in reply to onamission]

I'm not aware of one in Shropshire. I believe your nearest lupus specialist may be Prof Caroline Gordon in Birmingham.

[ripon1756]

Hi,

With regard to your query about the rash. My question is do you wear a lot of so called fashion jewellery?

I have a nickel allergy and have to avoid a lot of jewellery. I've also now discovered that nickel is very high in a lot of food items. Perhaps you should have yourself checked out for allergies.

[jellynpain in reply to ripon1756]

Hi,

Thanks for your reply. I don't but I know someone has sclerosis, the rash that comes up with nickel & allergies. It doesn't resemble mine.

From my post it seems others get their Lupus rash to the front of the throat/neck. I will bring this up with my gp (again

[flossy1]

I was correctly diagnosed by my GP. I went with nasty burns on my face and neck. He knew what it was immediately (I already had thyroid, sjrogrens and fibro. I was seen by a team of 4 rheumatologist. My GP advised me to take photos of my face and neck at their worst as I was by then taking steroids and it had started to clear up a bit. Their decision was unanimous, I had SLE. I was lucky my doc recognised what was wrong. I was already taking hydroxy, the standard immunosupressent that is used to treat lupus for sjrogrens.

I hope this helps you. Paul has given you all the info you need.

Please keep in contact. X

[flossy1]

Hi jellynpain

I've just re-read my reply to you asking how I was diagnosed.

I'm sorry it's not very well explained. I wrote it in bed after my meds.

I know I'm a bit dipsy but friendly.

Hop your having a goods day. Flossyx

[jellynpain in reply to flossy1]

Hi Flossy,

No worries, I have plenty of woolly brain days & sometimes read back what I have written & think omg!

Can you detail me how you was when your Lupus started & how you got to diagnosis (tests etc). I have a fab gp but my symptoms overlap a few conditions so all a muddle.

Regards Lupus my only test for this was Ana (twice, months between). Came back normal.

How's your day? X

[flossy1]

Hi jelly as with most of us it's a long journey. Mine started years ago with blurred vision. A young doctor at the eye clinic took bloods and diagnosed low thyroid and possible sjrogrens. No positive Ana at this point. I visited rheumatologist yearly for a few more years before a positive Ana result. This was diagnosed as primary sjrogrens. It was another 5 years before lupus was diagnose. When I visited my gp with my face and neck in a mess, he knew straight away what was wrong and went from there. Blood tests and my Rhumey confirmed lupus.

I hope this helps but every story is different.

Keep visiting the site and follow Paul's advice.

God bless x

[jellynpain in reply to flossy1]

Thank you Flossy

My road is pretty long, and getting longer... so frustrating.

Underlying it seems once I was diagnosed with CFS/ME other consultants show no interest even though since that diagnosis other medical findings have arisen that do not point to CFS/ME.

I am going to follow Paul's advice & request a referral to a Lupus clinic. I may be barking up the wrong tree but desperate to get it right (hopefully with treatment).

Thank you so much for the info. Clearly Ana being ok should not be the end of investigation.

I had a skin biopsy which game back 'normal' with some infection. Do you happen to know if Lupus rash incorporates any infection?

Xx

[flossy1]

Hi sorry I don't know if the lupus rash incorporates any infection. I'm pleased your going to request a referal. Let us know how you get on.x

[quietone]

Hello,

I've been suffering from the same thing since this summer. It starts off as a couple of itchy patches and radiates outwards across my neck and shoulders. It sometimes scales in the middle and has become infected on occasion. With my hairloss, sun allergy and exhaustion my rhuemy has diagnosed lupus despite negative tests. I started on hydroxychloroquine 3 months ago, and it has helped although I am flaring at the moment.

How have things been for you?