I cant find anyone with this, without systemic involvement, even though I was ANA positive, and have a lot of the other symptoms of systemic lupus. I eventually got told by rheumy that I actually had fibromyalgia as well as cutaneous lupus. The main symptoms of the cutaneous side of things is my allergy to ultraviolet light. It was first thought I had polymorphic light eruption via a skin biopsy, but the UV chamber used to help try to 'desensitise' my skin, only made things worse! This miss diagnosis has made my skin worse than ever, and it now constantly stings if I am outside, and I get a nasty, itchy raised rash all over my upper body, but mainly on my face. I feel like a caged animal sometimes, always indoors with the curtains closed. Summer depresses me, and makes everything feel worse, so I do love it when it rains, hehe! I think I am the only one that does, lol!
I really would love to talk to people who understand, and people that care. And of course advice would be warmly welcomed :0)
Beks
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I too have Lupus without the systemic problems. As you say it's the UV light which affects me. Factor 50 creams and cover up clothes and hat. Sunglasses even in the winter. I'm indoors with curtains drawn too. Another problem is the lethargy and I spend every afternoon in bed. I plan my days around my tiredness. How many other Lupus sufferers are like this?
Hi Shrop You are not alone. Fatigue is "the" number one symptom. Some patients find hydroxychloroquine (Plaquenil) helpful for fatigue.
There are clothes and hats that have a special property to keep out UV rays. Even on a dull day, the UV rays can be strong. Apart from rashes and itching, this can make you feel ill.
We have more information at the Lupus Message Board (see above).
I do buy these clothes and am also on Quinoric. I still feel fatigue badly and have flare ups often - I use steroid cream probably 3 days a fortnight. Thanks for your advice I'm sure it will help others. Joan
It sounds as if you have quite a "bad" (putting it mildly) time. It is difficult for other people to understand as "fatigue" is invisible to other people. All you can do is to listen to your body and rest if necessary.
Thank you so much for you're reply. Jan, I am saddened that you suffer too, but also relieved that I have found someone that understands what I am going through, as it is a very rare form of lupus. May I ask if you have a good dermatologist? I am lucky enough to have a great consultant, and have regular appointments at a photosensitivity clinic she runs. I tried Quinoric, but even though my consultant doesn't agree, I firmly believe that those tablets along with the pregab's for the fibromyalgia, turned me into a completely different person! I had what I can only describe as phsycotic outbursts, depression and tiredness just got worse. Not a great place to be at all. Do you have any of these symptoms at all, or do you get on with them? Its a shame I cant use them, as they really did help my skin. And does the steroid cream help at all? It can thin the skin at a rapid rate, and would like to warn you of this if you were not already aware. I use protopic cream for cutaneous use only, and seems to be helping alleviate the itching, but I still get the damn rash! and that is even when the curtains are closed, as some uv light can still penetrate through them! And through clothes too. Its not fair that we have to hide away Jan!! ((hugs)) especially for you. I hope we can help each other in times of need, and give each other a bit of moral support. Please know that I am here, and I feel you're pain and sadness.
Ross, I have not heard of taking quinoric for fatigue, that's a new one on me! I'm glad its helped some people, as it really is a hidden condition, and almost crippling at times! everything is effort, especially with the heat we have been having lately, and its very hard for family and friends to understand. I was put on steroids, and that didn't end well either, lol! I had heart palpitations, was paranoid and sweaty, so put on beta blockers, and was told to wean off the steroids slowly. Goodness, it felt good to be rid of them! That was years ago though, and I have not been offered anything else as yet to help specifically with the fatigue symptoms. Just told to pace myself and learn time management! that would be great, only I am a mother, and foster mother to 3 teenage boys and a nine year old boy too...god love em, but pacing isn't an option, lol! Where are the lupus message boards you mentioned Ross? I am newish here, and still working things out ;0)
You have had a very difficult time, yet your post is very "upbeat"!
Fatigue is probably "the" most common symptom and oneof the hardest of treat because it is related to the disease and inflammatory process. If wedidnot have lupus, there would not be the fatigue either. Hydroxychloroquine (Plaquenil) can help fatigue but it is not a cure-for-fatigue. As you suggest, you need to listen to your body and rest when you can. However, as a mother, this is nigh on impossible unless you can ask for some help when you need it?
There are special clothes that may help. There is some information at the LuPUSMessage Board. The details are below:
We have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.
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Sometimes we need to talk to people who understand and who are not family or friends.
With good wishes!
Ros
Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.
Just back from holiday and catching up on some posts here.
I am 41 years old and have 3 children, aged 8, 11 and 12 - so can relate to being a mum with lupus and chronic fatigue etc.
I have SCLE - Subacute Cutaneous Lupus - which is a subgroup of SLE and DLE. I had a positive ANA blood test and ENA and Anti-RO - apparently the anti-RO indicates sun sensitivity and lead to my specific diagnosis in November 2013. I have since had a biopsy on the rash at the nape of my neck and this confirmed lupus there too.
Looking back with hindsight, I think I had had lupus for about 5 years at that point and had had my first big lupus flare, but had gone undiagnosed. I also had warning signs most of my life.
I have however just managed a two weeks holiday in Italy in August - with a mixture of rash vests (Boden) and sun protection clothing (Craghoppers), floppy hat, sunglasses, my Ego Sun Sense sun cream from my GP, a hand held parasol, long trousers etc. But I think the steroids I am on also helped a huge amount - second course ever - 5 weeks tapering from 20mg down.
I guess you already know that if you hold your clothing up to the light and you can see the sun shining through the material, it wont give you enough protection. For example a white t-shirt will only give you 5-7 SPF.
So I wear darker, thicker clothes at home - but if on holiday or going to the beach with my children for the day, I wear rash vests and take an umbrella to sit under.
I have been taking 2 x 200mg of Hydroxy since November 2013 but it became increasingly apparent that this was not dampening my symptoms enough. And this year following my biopsy and a number of flares, increasingly close together, my Dermatologist has started me on Mycophenalate Mofetil - this has been increasing whilst the steroids reduce. So was on 1mg a day for 3 weeks, and now increased over another month to 3mg a day. I have been told that it could take a few weeks for the MMF to get working fully.
I actually have a friend who is more sun sensitive than me with SLE and after years of fighting it and suffering hives and hiding away, she got a referral to an Immunologist - she travels quite a distance to see him - but they arrange appts with 3 specialists - immunology, rheumy and dermy - all at the same clinic for her and she is better than she has been for a long time. She says this gets things moving for her much faster too - full cooperation and agreement there and then.
Have you considered asking for immunology referral? Just a thought.
Welcome back Wendy. I hope you had a good holiday.
SLE mainly affects women during the child bearing years and thus, when we are mothers and workers etc It can be very hard dealing with everything and this is why I established LUpus Patients Understanding & Support (LUPUS) some 16 years ago, to provide free information and psychological support.
Not all rheumatologists are expert in lupus and some have never seen or treated a patient with lupus (SLE). Unfortunately, lupus is poorly taught and there are not enough lupus spcialists. SLE is in fact more common than muscular dystrophy, cystic fibrosis and leukemia combined. But, it is poorly funded and there is insufficient research.
There has been a great deal of success with Mycophenalate Mofetil, so Ihope you continue to improve.
I have Subacute Cutaneous lupus and i have had skin rashes for over 2 years now, My new meds did seem to help the rash and it nearly went but then the hot sunny weather came i have had a flare up on my arms legs and neck. i also found now that i cannot tolerate the heat and was praying for the autumn which is happily on its way now.
Its hard to stay out of the sun when you are out and about and i do wear sensible clothing but still the heat kept making my skin feel so uncomfortable like a burning and itching sensation. The meds i'm on are ACITRETIN it has improved my joints i only have intermittent hand problems with aches and stiff fingers but not so much since the weather has cooled down abit now.
madhead My dermatologist told me to always wear a strong sunscreen and a big floppy hat. The heat bothers me also. I wear culottes and 3/4 length sleeves. Where I am exposed is where I get the worse rashes. When I get a bad flair my face & chest, arms and legs get beet red. I have been out the last two days and the weather was in the 80's but no bad flairs. woo hoo. The rash got bad when I was told for a couple of yrs it was an allergy and to change detergents. Therefore, no sunscreen etc. justjan1944.
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