I would appreciate any comments or opinions on the photos I've posted.
I have been suffering from lupus type symptoms for a number of years now but am struggling to get treated due to negative blood results.
I have always said to Docs and Rhuemey that I dont get a malar rash, but have suffered from extremely sensitive and photosensitive skin since childhood. I have always hidden away from the sun, after the childhood traumas of my face swelling up, severe sunburn, and prickly heat type symptoms after as little as 20mins in the sun. I had numerous tests for photosensitivity as a child, along with numerous allergy test. All I remember is having lights shone on my back and drops of liquids put on my arm and then pricked. I then proceded to devlop large bumps and bright red rashes under almost everything. After that I never went in the sun for any significant period of time.
Durring my teenage years and though to adulthood, I discovered which creams, shampoos, washing powders affected me, and have stuck to tried and tested brands religiously to avoid unsightly and uncomfatable rashes and reactions. I also avoid going outside on sunny days, and always wear foundation that has an SPF 50, to avoid any rashes on my face.
Up untill recently I had never conected any of this to my never ending list of weird and wonderful symptoms.
I am due to see Dr D' Cruz in a couple of weeks, ideally for a seronegative diagnosis and treatment for my lupus like symptoms ( I am aware that I may not get a definate diagnosis, but am desperate for treatment so I can resume some sort of reasonable standard of life). in preperation for this, I am complyling a list of symptoms and conditions to take along with the report from previous rhuemy appointments. I also have photos of joint swelling to take along with me.
Today has been really sunny, so I decided to do a little test....... I removed foundation (spf 50) and sat in the garden for approx 30 mins at 12.30. I took the pictures I've posted at around 5pm.
I have googled malar rash, and to me my pic looks similar to many of the images online........ ??????
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heather1983
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tazzydevil- my symptoms are; severe fatigue, joint pain and swelling (toes, ankles, knees, knuckles), mouth and nose ulcers, pluretic type pain, abdo pain, migraines, photosensitivity, dry eyes, raynauds, toe nails falling off, breathlessness, chilblains, brain fog, pins and needles, numbness in hands and feet, nausea and sickness, heavy irregular periods, and random bruising....... lol, i seem to have every autoimmune symptom going, although my bloods do not show any sign of inflammation and ana is negative.
I was quite surprised that half an hour in the sun produced such a prominent stip of redness across my nose and cheeks, when the rest of my body didnt seem to mind being in the sun atall, in fact it will have helped boost my vit D levels which were 16 last time it was checked!
I am realy hoping that Dr D'Cruz will be willing to treat me given the list of ailments and now pic of rash. a few people on here have messaged me to say the he has diagnosed/ treated them even with negative bloods, and looking at the St Thomas's website, there is a case on there where things like teenage growing pains and allergies where taken into concideration......... well I certainly had those too
You have more problems than me. I just have the joint pain, numbness in my hands mouth ulcers and fatigue. It took 6 years to get a diagnosis for me. I've only been on treatment 8 months and except from steroids, so far not much else has helped so far. I hope you get what you need x
Your rash looks like the one I can get. I'm like you difficult to diagnose with a label of Undifferentiated Connective Tissue Disease but I am being treated which is what you need. Your preparations for Dr d'cruz sound really good so good luck for when you go and let us know how you get on. X
misty14- I would be so grateful to get a UCTD diagnosis so I could get treated.
I live on a cocktail of painkillers and anti sickness pills which only mask the problem, my last rhuemy gave me a 2 week trial of prednisolne and I felt the best I have for years, but coz bloods were negative Im not allowed it now ! All I want to do is atleast begiven the chance of trying hydroxychloroquine, I know it takes around 6 months to kick in, but atleast that gives me hope that in 6 months I may be feeling a bit better and be able to come off pain patches and tramadol.
The GP is refering me through the NHS, but I think I might just pay to see him at London Bridge, and try and kick start the whole process.
Hopefully what you will achieve with seeing Dr d Cruz is getting treatment. It's finding the Rheumy who will do this regardless of whether it's UCTD or sero- negative lupus. Dr d Cruz sounds like he will and what he could recommend is a short course of steroids again to tide you over till the main treatment kicks in!. Specially as you responded so well on them. Shows your illness is inflammatory based. Good luckX
I got malar rash too if I'm being out on the sun...Lately, I discovered that the sun affects on us because of lupus...the body easy gets inflammation including hot spicy foods, alcohol, expressive working, worry and stress...the sun contributes the most because it has heat and UVF.
The day I feel good, I feel like to be outside and think maybe I will be fine, but I'm not fine... (the wish of a miracle can happen, but not yet)
It make me sick for a week. Now, I'm always cover myself up, resting, reduce activities for the sake of my health.
kimc- that's exactly what it's like for me. even before i became ill. obviously i've written about the suns effect on my skin as a kid, and how I've had to be really careful all my life. But in my adult years, ive always noticed that any length of time spent in the sun causes extreme fatigue and flu like symptoms. I had my son (now 13) when i was 18, and worked full time as a sales manager in a call centre, on my days off, we'd play in the garden or have a BBQ, but I'd always end up passed out on the sofa aching all over and weak....... i thought it was coz i had a stressfull job and busy life, that when I stopped and rested, my body would decide to take full advantage of the downtime and render me usesless to allow me to continue the next week. Now im certain it must have been autoimmune related.
ive read stories on the internet where people have battled for years with unhelpful docs and consultants that refuse to treat due to negative bloods, then finaly their kidneys pack up and low and behold it's due to lupus (or similar). Ive had blood in urine and uti symptoms without actual infection for about a year now- i dont care what my blood says, i know how i feel and i want to be treated rather than be layed on the sofa all day , waiting till i can take next pain killer.
Hi Heather, I am much older than you, however all my life I have had rare and unexplained health issues!! - (even non-viral Hepatitis three times!!) - I was told eventually as a result of removing one of my lumps and sending it to be tested and more importantly - I had a special blood test, where there was a 'runner' who had to put my container of blood against his heart and keep it at body temperature, whilst running with it down to the basement to the Lab!!
It was a tally this particular blood test which finally gave me an answer!! - I have too much Cryoglobulin in my blood!! - plus results of biopsy = a diagnosis of - URTICARIAL VASCULITIS!!!!! (this comes under the UMBRELLA OF.....LUPUS!!
You also look exactly the same as me and I also often feel nauseated when I am in the sun! It is definitely not a pleasant experience!
I have been put on. Very large doses of Cortisone o er the years, however in retrospect I feel this caused me more problems! - (a case of the cure being worse than the cause!)
There simply doesn't seem to be an answer as I have found that my periods of remission have been less and less, the older I get!
I have always taken a Multi Vitamin, however even though this has B in it, I also take an EXECUTIVE B TABLET!! - I am sure this helps!! - I also take ZINC (great for the immune system) and most importantly VITAMIN D!!!!! - I didn't know until about six months ago that I had an enormous D DEFINCIENCY!!
I had noticed my skin was Very dry, my hair was falling out and becoming very thin, my nails were breaking!!
I was told by my G.P. to take one per day, however there was no difference until she told me to UP THE DOSE TO TWO A DAY!! - VOILA!!! - MY HAIR IS GROWING BACK, MY NAILS ARE BECOMING HARD AGAIN AND IN ALL I AM FEELING BETTER!!
I now actually feel that after a lifetime of illness (unexplained) that the very best cure, for me, has been my VITAMINS B - D - ZINC PLUS MAGNESIUM!!
Good luck, darling girl - I wish you a happy life and I hope all your dreams come true!!
(I love the look on your baby's face!! - IT IS CLASSIC!!)
lol, i've only just noticed Scarlett in the background, she loves having her photo taken!
Ive just started taking Vit D as I am also deficient (not surprising as I avoid the sun at all costs normaly), so am hoping I may start to feel the benifit as my levels increase.
when I first became ill, 2 1/2 years ago, I went to health food shop and was advised to take all sorts of differnt vitamins and minerals for to help each differnt symptom, however my GP seems to dislike any sort of non medical remedy and as new symptoms developed I found the GP blaming the natural supluments before acknoledging the symptom was actualy there. so I stopped taking all of them. The GP has also tried to blame the medication they perscribed, so I stopped taking all of them and ended up in hospital for just over a week untill pain came under controll again!
Im hopeful Dr D'Cruz will be willing to treat me, but if not I will defo be going back down the natural route.
Like you I have many symptoms of Lupus and have suffered for many years the only time I was free from any symptoms was when I went to Kenya. I thought I would come back covered in bruises and feeling like c@@p being thrown around in the van.
I felt fantastic not a bruise in site I told my DR he said it was because I was happy and on holiday.
Today I have the rash on my face painful joints and balance all over the place I just want treating for whatever the condition is.
I get this, too, but haven't connected it to the sun or something else. I get many other lupus-type symptoms, but my doctor doesn't like to diagnose it as lupus, he said. I have been diagnosed with multiple allergies and inflammation, though.
Yes, I have been treated and still am being treated with homeopathy, which has helped me a great deal and still does help me. Unfortunately, homeopathy has been given a very bad press in the UK for a while and many CCG's are now doing their best to stop patients from receiving homeopathy with one group calling themselves the Good Thinking Society, suing Liverpool CCG for spending money on homeopathic treatment for patients - I have signed the petition circulating to support the Liverpool CCG and other CCG's who wish to keep homeopathy as a choice for patients. I am fighting to keep my own treatment, too at the moment; it is far cheaper than drugs, more effective for many and has no side effects in my experience - probably saving my life as I cannot take drugs anyway. It works on the whole body not just the physical, which I find is brilliant because it helps me to see how to deal with my problem and even what is causing it.
Good luck on your appointment. Don't worry too much. Serious rheumatologists are treating those of us who are seronegative these days. When I first got sick it took me seven years to get plaquenil which changed my life. I went into close to remission. When I got sick again, it only took two years, but I knew by then to head to a university hospital with a major rheumatology department. I think you may be going to the right place. Yes, that does look like a malar rash.
YES!! - I was also taking a huge variety of vitamins!! - I then decided to trial them all (it took ages as you can imagine ! - I finally came down to the basics!! VIT-D...VIT-ZINC+MAGNESIUM .......MULTI - JUST FOR WOMEN......MEGA-B.......I ALSO DRINK HUGE AMOUNTS OF WATER, - E.G.: UP TO AT LEAST 2ltrs PER DAY! (I feel this is extremely important!!!!!
I also noticed the approximate age of your BEAUTIFUL SCARLETT!! - I SUDDENLY REMEMBERED..........UP TO ONE YEAR AFTER HAVING EACH OF MY CHILDREN, MY SYMPTOMS WERE MUCH WORSE (strangely and particularly, nearest to their FIRST BIRTHDAY and up to SIX MONTHS LATER!!
There is no medical confirmation OF COURSE!! - IT WILL BE INTERESTING FOR YOU TO NOTE HOW YOU FEEL IN THE NEXT SIX MONTHS (maybe keep a diary) - I PERSONALLY. BELIEVE YOU WILL GO INTO SOME KIND OF REMISSION WHEN, OR BY THE TIME SCARLETT IS 18months old!!
I also have multiple allergies!! (not the usual ones which people get!!!) - I am SEVERELY ALLERGIC TO SULPHUR!!! - this can also be found in a lot of drugs and some foods!! - I PERSONALLY BELEIVE THIS IS THE CULPRIT!!!!
I suggest you google Sulphur and side effects and also in relation to Lupus!! (it is mainly YELLOW SULPHUR!! - this is actually what a lot of antibiotics are based on!!)
I only need to take ONE TABLET WITH SULPHUR and within seconds I begin to pass out and go into shock!! -
I NOW HAVE FOUND THAT MY WORST ENEMY IS MAINLY MEDICATIONS!! (I carry a huge list with me!! ) - if I need to have an anaesthetic I am always extremely nervous as the only one which I can trust is Pethadine!!
TAKE NOTE THAT MEDS (mainly used in Pain killers) WHICH CONTAIN IBOBRUFIN REALLY MAKE ME A LOT WORSE!! - I have found that only products which contain PANADOL and CODEINE, are by far the BEST FOR ME!! (I have actually read that IBOBRUFIN can be very bad for patients with Lupus!! (I found this very interesting as I found out simply by trial and error!!)
I wish you so much luck - (I BELEIVE you will go into remission soon as I did!! - then after I turned (EEEEK!! - 60 (can't be true!!) I have found that my periods of remission are becoming less and less (I have made up some new swear words!! - it helps !!😜😜)
I then recently read that this is normal for women with Lupus!
Doctors, I feel are a problem, as most have NO IDEA WHAT LUPUS IS ALL ABOUT AND VERY FEW ARE DOING RESEARCH FOR SOME WIERD REASON!! (maybe due to the fact that it has been put into the 'too hard basket!!' - HOPEFULLY SOMEONE OUT THERE, WILL DECIDE TO SET UP A HUGE LAB, FILLED WITH GORGEOUS WOMEN WITH LUPUS!! (he will have gorgeous men to look after our every need and totally pamper us!! - HAHAHAHAHA!! ( I have a very twisted sense of humour!!)
I can't think, at this stage of anything else, so sweet gorgeous girl, I wish you well and may all your DREAMS COME TRUE!! - lol - N💗💗💗
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