Is Malar type rash in Lupus a permanent feature ?

Hi all

I have recently been diagnosed with Fibryomylgia but have realised I have several symtoms that are in common with SLE. In particular this year I have started to experience very significant hair loss and some unusual symptoms involving skin including:

Malar type rash? Took me a while to suss that this was triggered by ( although in retrospect I don't know why) being in an uncomfortably warm environment that I cannot control ie ( not decent to remove more clothes , unable to open windows or leave building whist awaiting appointment) I experience what looks like a typical malar rash which persists for several hours with skin noticeably warm to touch , burning / itchy and uncomfortable. I have been told that the malar rash associated with SLE is permanent - is this true?

Sun Sensitivity. - 15 mins or so exposure to bright sunshine my entire face/ neck / ears become inflamed , bright red with burning sensation similar to sun burn , symptoms persist several hours ( or gone when I awake next day). Symtoms not associated with skin cream or other as happens on clean skin.

Recently diagnosed with Dermagraphism by Dermatolgist during consultation for my hairloss.

I am uncertain as to exactly which blood tests were taken earlier this year by the Reuhmatologist who diagnosed fibromyalgia and I am requesting copy in order to compare with the tests used to diagnose SLE - although I would be more than happy to have SLE ruled out as a diagnosis!

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Hi I was told I had lupus 18 months ago but have now been told I have ctd the Meds are the same and both have common simptoms?

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Drs often like to give you the "lower" Dx until you have a higher ANA or there is kidney involvement etc. The treatments are typically the same. I also have Fibro. Gabapentin controls most of my symptoms. I was on Plaquenil for about a year and stopped it this summer. The symptoms still seem under control with just the Gabapentin. That will somewhat help with sun exposure, but heat does me in pretty quickly. Staying "cold" is a part of my life.

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Hi Ziggyplayedguitar,

Welcome to the LUPUS UK HealthUnlocked Community!

Fibromyalgia can be commonly diagnosed during early stages of lupus. There are a few blood tests that are checked when diagnosing lupus. These are discussed in our free information pack; to download or request the pack please click here lupusuk.org.uk/request-info... .

You may wish to read our blog article on 'getting a diagnosis of lupus' here: lupusuk.org.uk/getting-diag...

A malar rash isn't generally permanent and will often appear when disease activity is higher or when exposed to certain triggers like UV light.

Yes, rashes can be induced by sunlight as well as other factors which are discussed in our guide on lupus and the skin: lupusuk.org.uk/wp-content/u... . We published an article on our blog about coping with itchy rashes; the article contains helpful tips and information which you can read here lupusuk.org.uk/coping-with-... .

We published an article on our blog about coping with light sensitivity which you may like to read here: lupusuk.org.uk/coping-with-...

Last year we published a blog article called ‘Coping With Hair Loss’: lupusuk.org.uk/coping-with-...

It is important to bear in mind that lupus presents differently in everyone therefore, no two people will share the exact same experience. It is possible for people to experience periods of remission where their lupus is controlled and they feel relatively better; reducing the signs of their symptoms.

Please keep us updated, wishing you all the best.

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Thank you for your replies and I had already read much of the information on the site , which i found very useful and was what actually made me question SLE as a diagnosis over Fibromyalgia.

It's been a very dispiriting, depressing and belittling journey over last 2-3 years to reach a diagnosis of Fibromyalgia and I've got to ask myself what was the point? It hasn't achieved anything that will help me cope any better.

Besides several debilitating physical symptoms Im having a really hard time coping with periods of fatigue , forgetfulness and the dreaded 'brain fog'.

Following diagnosis the NHS has offered nothing other than physiotherapy . At my last appointment the Consultants feedback/ discharge letter said ' 'I have explained to this lady that for oesteoarthiritis and fibromyalgia the focus here is physiotherapy to maintain her fitness and also promote pain management strategies as there is no magic wand to wave her pain away'

I'm 59 years old! Yet the Consultant feels talking down to me as if I'm a child who still believes in the tooth fairy is acceptable '

I have oesteoarthiritis in multiple joints and whilst pain is an issue my greater problem stems from morning stiffness which will sometimes continue throughout the day: I can sum it up as 'on a good day I can just about touch my toes, on a bad day it's a hell of a struggle to put my shoes and socks on !

I'm not saying that physiotherapy would be of no help but I cannot see it as the 'be all and end all' ??

I am not overweight and when I am able to work ( which is far less due to periods of illness) my work as a Dog Groomer is very physical indeed. A Spaniel weighs 2-3 stone , a lab can be twice that and I will have to lift them multiple times , use my upper body strength to help maintain them in the right position , and as you can imagine bathing, brushing & grooming dogs means a lot of bending and stretching on my part! Not to mention all the sweeping up and cleaning afterwards. Who needs the gym after that?

Even when I'm at my worst it's a rare day I don't walk my dog at least a mile as minimum & often 3 -5 miles depending on health and weather. Seems like I probably do more or at least as much exercise as your average 59 year old female?

I'm very tempted to tell them to do something not very nice with their offer of physiotherapy ! Logically , I suppose I should attend at least one or two sessions and then judge it's value to me .

Interested what other members think of physiotherapy and did it help?

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