Newbie , skin vs the sun

Newbie , skin vs the sun

Hi, I just joined today. I have been having tests for lupus for 5 years and was finally diagnosed with hypercomplementemic urticarial vasculitus about 3 weeks ago, I also have some sle  symptoms: slight hair loss, sweating (profusely), nausea, ear problems, skin rashes , breathlessness . I was wondering if any of you get the same rash as this after being in the sun, bearing in mind I was wearing thick jeans and compression tights at the time so I was very well covered! 😁

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  • I do get that if in sunshine but I also get that if I sit under strip lights or those energy saving one's in the hospital too.That is even wearing jeans or thick skirt so I now slap the 50+Sun lotion on like a body cream on body ,legs aswell as on face ,neck,arms etc before getting dressed and that does help a lot.I also have to wear a hat or my head/scalp is affected too.You can get the sunlotion on prescription to make daily use affordable. 

    Hope something in that waffling on helps.


  • Hi, thanks I didn't even think of trying the sun lotion under my jeans! I wear it on my arms because they  react badly too but usually only if I have them uncovered. I'm also on very strong anti-histamine ( they don't seem to work do they?!) lol

  • I am on 2 different antihistamines a day 1 twice daily the other 4 x daily and they make a little difference.

    As for the sun lotion I had several "blonde" months before engaging what a pitiful excuse for a brain I have and realising putting it on all over.Bit of a eureka moment,having a thought that is,and it has made a big difference especially those long waiting in clinics sitting under the lights that everybody else seems to be ok with or when driving and the sun is on your legs.

    Hope it helps and you'll come back and let us all know.

  • Lol well I wouldn't of thought of doing it if you hadn't told me😖

    I will definitely be trying it, the strip lights give me migraine lol I'm on propranolol for those. Take care of yourself and I'll let you know how I get on x thanks for your help xx

  •  Hi Effie: I've asked Richard & Keyes this ? wondering what you'd reply too:

     I have livedo reticularis too, it's always present, + flares when I'm more poorly eg during infections. The "visible pattern" of my LR is similar to that in jokelby's photo. But my LR is purplish, not red. Where's my heat & sunlight reactive urticaria marbling is always bright like jokelby's. I've always wondered why the 2 patterns are do similar but the different. Do you know?

  • I asked my rheumy a few years ago who had no idea but my specialist lupus nurse,bless her knows more than most,said that the LR is darker due to it being more a blood ,vein issue from inside involvement whereas the sun reaction is an irritation of the skin as like a burn so shows the pattern brighter as an on top of the skin outside going in reaction.It made some kind of simplistic sense to me so hope that helps.

  • Great explanation: dear SLNs 🌟🌟🌟👏👏👏

  • Do you have Hughes syndrome?

  • Apparently not, but....wait n see...

  • Hi, 

    I don't know if you are aware that there is a Vasculitis UK Health Unlocked Group, there are a few people there with HUVS ( which is exceptionally rare! ). It seems to go hand in hand with SLE symptoms for some patients. 

    I hope you are seeing an appropriately experienced Consultant as very few Rheumy's will have experience of treating HUVS. 

  • Hi, yes I'm seeing a good rheumatologist, having said that he's only put me on anti-histamine at the moment! He says the huv is a type of lupus and that he considers me to have sle , even though blood tests have always been negative, but I have many of the symptoms 

  • Hmm, I think they used to think that HUVS was a form of Lupus but not anymore. I take it that you are positive for the c1q antibody? It would be unusual to treat it with only antihistamines, although so much depends on the organs involved.  Have they done tests to establish the degree of organ involvement, especially kidneys, heart and lungs? 

  • I had to have blood tests so I'm assuming they were looking for organ involvement in those?! I'll be honest, I didn't see my usual rheumatologist and the one I did see was a little bit peeved that he'd had to "squeeze me in" as he put it!( not my fault my rheumatologist wasn't there for my appt!) I know I've been tested for the c1q antibody so I guess I must be positive to be diagnosed! I really haven't been told much! He mentioned hydroxychloriquine but I've had them before and hated the side effects

  • Blood tests won't show up lung or heart involvement ( you mentioned being breathless ) and I hope they dipsticked your urine to check for blood and protein ( a sign of early kidney damage before the blood tests are positive ). 

    I am involved with the Vasculitis UK set up ( I help on the helpline etc ) and " lurk " here as one of my early rule outs was Lupus. There is some info on HUVS on the VUK website and some good academic articles ( I will post the links ). If you want some more info and a general chat about HUVS I would encourage you to phone the VUK helpline. My heart sinks when I read that patients have been given these very rare diagnosis but not supplied with any information! HUVS is so rare that you really need to see the most experienced Consultant you can, usually someone with extensive Vasculitis experience. There are a few dotted up and down the country and the helpline can direct you to someone. 

    It's not my intention to alarm you and of course you are perfectly entitled to ignore what I have said. 

  • I don't think it's huvs it's huv or are they one and the same? I'm under the respiratory team for breathlessness but don't get test results until June! Nope they've not dipped my urine, they've literally given me anti-histamines told me what I've got and sent me an appointment for next month! I'm seeing my usual rheumatologist next time who does seem to know what he's doing so hopefully he'll do all the necessary tests. If not I will give the VUK helpline a call. Thankyou x

  • i think they are a spectrum with HUVS at the more severe end. Sorry, my mistake but still quite rare! 

  • No probs. I'm grateful for any and all help I can get.😁

  • Hi, I've just replied to your post on the VUK group and then seen this :)

    HUVS, HUV and UV are variants of the same disease but tend to indicate the severity and level of systemic involvement.

    I believe that lung involvement is common in HUVS. Certainly I had a degree of wheezing breathlessness when my HUVS was active.

    As Keyes says, the anti C1q test is a main one but they should be checking kidney function as that's the other big possibility.

    Antihistamines can help but ultimately if there's systemic involvement you've looking at steroids and probably something a bit stronger than hydroxy.

    Personally I'm not aware of any HUVS experts but David Jayne at Addenbrookes does see people with the disease and Prof Pusey's team down at Hammersmith talk about HUVS with some authority. If you're struggling you could always ask for a referal to one of these.

  • Thanks Richard. 😀

  •  Hi Keyes: I just asked Richard this ? below...would be interested in your reply too:

     I have livedo reticularis too, it's always present, + flares when I'm more poorly eg during infections. The "visible pattern" of my LR is similar to that in jokelby's photo. But my LR is purplish, not red. Where's my heat & sunlight reactive urticaria marbling is always bright like jokelby's. I've always wondered why the 2 patterns are do similar but the different. Do you know?

  • Hi Barnclown, 

    I don't know that much about LR apart from the fact that one of the rule outs should be Anti Phosphalipid Syndrome which goes hand in hand with Lupus for some patients. 

  • Thanks 👍🍀

  • Thanks Richard. They did give me steroids when I first ever went to rheumatology and they did help the breathing and pain. All they said though was "hmmm interesting !" Lol

  • Ha, I do dislike being "interesting" :)

    I think they can often be cautious in prescribing steroids and the stronger immunosuppressants because of the side effects. It can be a balancing act of weighing up the severity and likely impact of the disease against the potential risks of the treatment. I think the trick is to make sure that they've fully assessed both your visible symptoms alongside the blood tests to properly understand the impact of your disease and come up with a treatment plan that's tailored and appropriate for you alone.

    If you want to test your rheumy you could always ask if they've assessed you with the BVAS and VDI measures (Birmingham Vasculitis Activity Score and Vasculitis Damage Index). These are well recognised measures of vasculitis activity and damage and should widely be used by rheumatologists and other professionals to diagnose, assess and monitor systemic disease.

    There's a medical article here that has more detail if you're interested :

  • Thanks for that, I'll is read. I'll be sure to put the rheumatologist to the test! I felt great for a couple of weeks after the steroids and then it all came crashing back to me! 

  • I think for me the most important thing is for them to assess the degree of organ involvement properly. Waiting till June for Respiratory results is outrageous! That's what happens when care becomes compartmentalised and each specialist is looking at their own " bit " and not you as a whole. 

    You really need your Rheumy to be your lead physician and liase with the other specialities. Breathlessness can have a cardiac cause as well. The main thing is to prevent end organ damage, obviously disease only affecting the skin needs far less aggressive treatment than that affecting the heart, lungs and kidneys. 

    The diagnostic and effective treatment delay that I experienced ( despite my best efforts researching and travelling all over the uk ) has meant that I have lost my job and driving licence. Unfortunately we can't always expect things to fall into place and our care to be " expert " without pushing for that. 

  • I should of got the results on 4th April but when I went to the appointment I was told it has been cancelled and rearranged for 6th June! Nice  of them to notions in advance eh? Yes it is worrying having to wait, especially as both my parents have cardiac issues and my mum has lung issues, so there's a family history there!

  • Hi Richard.  I have livedo reticularis too, it's always present, + flares when I'm more poorly eg during infections.  The "visible pattern" of my LR is similar to that in jokelby's photo.  But  my LR is purplish, not red.  Where's my heat & sunlight reactive urticaria marbling is always bright like jokelby's.  I've always wondered why the 2 patterns are do similar but the different.  Do you know?

  • Hi BC,

    I don't know much about livedo reticularis I'm afraid as it wasn't one of my symptoms. Alongside the urticaria I had a very standard vasculitic rash and some other inflammatory marks and oedemas. But my urticaria did not appear to be light related, it just tended to get worse at the end of the day and ease over night. I think that reactions to sunlight tend to be more at the lupus end of the spectrum.

    But as I say, most people I've spoken to who have HUVS experience a variety of different symptoms with the disease. I've also spoken to clinicians at Hammersmith who've said they believe that a diagnosis of HUVS covers a range of very similar diseases - hence its definition as a "syndrome". So I think that, as with many types of vasculitis, there's no "one size fits all" answer.

  • Makes sense: thanks 🌟🌟🌟

  • Hello jokelby and thanks for this great discussion

    It's been very helpful to me because my version of infant onset SLE is this type.

    My ANA is neg, my C3&4 are always either just below normal or at the lowest end of normal range.  I also have an early onset immunodeficiency which immunology told me yesterday may well require IV IgG treatments.

    But so far I haven't had to resort to antihistamines...and I still can't find a sunblock I don't react to

    My impression is that my version of this is relatively mild, but I have significant multisystem debilitation because the infancy diagnosis got lost when I moved to the uk @ 21.  So the NHS spent 30+ years diagnosing & treating multisystem secondaries + emergencies but never spotted the underlying systemic root of it all.  Finally in my mid 50s the progression of the debilitation was bad enough for referral to my brilliant rheumatology lupus & Vasculitis clinic where we've spent the past 5 years sorting out a combined therapy treatment plan that is helping me feel better than I have since my 20s...but now that plan may need to change because of my immunology probs...argh

    Am glad you're hoping to have updates from you

    🍀🍀🍀🍀 coco

  • Hi x I've only had anti-histamines prescribed so far but I'm hoping for a plan to be sorted soon. This has been going on for 5 years now! When it first all flared up I was in a right state! Lumps and rashes everywhere,the nausea was debilitating BUT it still took 3 years for my doc to refer me to rheumatologist!!! I'm very pleased to meet you x

  • 🤗🤗🤗🤗😘😘😘😘🍀🍀🍀🍀

  • I also get little blisters on my chest if the sun is really hot😜

  • Like water filled blisters?  I get these on my chest too...mine are mostly relatively small sort of bubbles 🙃

  • Yes mine are exactly the same! Thousands at a time! On my shoulders too sometimes 

  • SNAP: I hope you'll stick around here buddy 👌👍✌️

  • Yes I'll definitely be sticking around xx😘

  • Interesting, I had a few tiny little blisters on my fingers when my disease was active. They burst if I knocked them and contained clear fluid. They didn't seem to be sun related but do sound very similar.

  • I also get a rash on my hands. The start of as itchy lumps/ blisters and burst when I scratch them and get sore and scabby

  • Hi Jokelby, I can't give you clinical input and suggestions like the others, but back to the factor 50 - I put it on (thankfully only need it on my face during the cold weather) as part of my morning get up and wash so that I don't forget!  Then if I'm going somewhere with strip lighting or out in the sun, I reapply every 2 hours.  Seems to work for me because if I do forget even in the depths of winter, I get a reaction on my face.  Good luck,  Heather

  • Hi, I've started a routine with it today 😁 I would never have thought of putting it on skin that wasn't exposed! I have a rash on my face, it's there all the time 😢

  • I have lupus also and yes, the sun will effect it. I have learned it is give and take. If out in the sun doing things I enjoy, or staying inside and being miserable. I get more rashes/blisters in the summer from head to toe. Also have  to go barefoot 90% of the time because of rash on my foot. When I go out, I use the highest SPF sunscreen (70 and over) this helps some but still get the rashes/blisters. I even rashes/blisters in privet places. I know what you are going through. 

  • I'm glad you mentioned that last part!! I've had rashes down there, and swelling! I hate summer! I used to love it, was always in the garden but not anymore 😢

  • For me being a guy, it is embarrassing, you mention hair loss, I have no body hair at all from shoulders down to toes. (Yes, I don' have hair there). 

    I am now in a study for the skin rash/blisters. I go to the medical facility every month, strip down completely nude get examined from head to toe underneath and  between, then all rashes/blisters they find, they take photos even on and around genial area. (Now I'm use to being nude in public LOL! Might as well)

    I am not going to give up my life, I love being outside, I love being on the lake in my boat fishing. I have learned to live with it. I use the cream and  ointment the doctor gave me for the places when they flare up. Good LUCK to you! Learn to enjoy live and just live with what you have.

  • Hi, I too am a keen fisherman well woman but you know what I mean! That's when I mostly get the rash on my legs but like you I'm not giving up my life because of it! Yes I can understand how embarrassing it must be for you not having body hair but hey some of us choose not to so you're not that different! X I don't think I could go through your monthly examination though! Not unless I really really had to! Good luck to you and I hope you can catch some decent sized fish! As for me, in the last 5 weeks I've caught none!!😖

  • I'm glad you are not giving up! I'm not. As for fishing, I went yesterday caught a few. The no body hair doesn't bother me as you said that is the way to go now. I just don't have to pay to have it done. (My wife goes every month to get waxed, to get all her hair removed). Believe it or not you actually do get use to being nude, it gets to a point after you've done it enough it does not bother you. Actually, now most mornings I get up and don't put anything on until I have to go out. (We Live out in the country there are no houses close by so we can do it).

    The embarrassing part is the rashes/blisters that come up, but just have to live with it.

    With lupus you find out, you can, and do things you never thought you would have to do. 

    For example I have not been able to wear shoes in almost 2 years. I can walk on any type surface, the bottom of my feet are tough now, I think nothing of it, walking on rocks or pavement. I don't even like to wear shoes now, and I don't 

  • Blimey I can't actually imagine not wearing shoes! But like you said, you've got used to it so it's not a problem for you anymore. I'm sorry though that your rashes and blisters have been so bad that you had to get used to not wearing them! I need to find somewhere new to go fishing, the lakes we've been going to are rubbish at the moment! Take care x

  • Again you get use to it. I live in the southern U.S. In Alabama so  fortunately it doesn't get really cold here in the winter. 

    I tried to post a photo of my foot but, I couldn't on a reply. If you go to my page you can see one that I did post of my foot. 

    Also I get a massage at least once a month, it helps the joints. You might want to try that?


  • Wow that certainly is some rash isn't it!!! Yeah a massage sounds magical!!! I'll have to look into that! You're lucky you have a good climate to live in, here in England it's very unpredictable!  Lol 

    Have a great day 😁

  • It looks like something called toasted skin (or something fancy in Latin).  It happened to me once when I had been sitting in the sun wearing jeans.  You mentioned you were wearing jeans and compression tights.  It's important to be covered up but also not overheated!  Here is a link to an article about 'toasted skin'.

  • Lol that's a funny name, this isn't the first time it's happened. It happens whether I have a thick or thin covering on my legs. I will have a read of the link, Thankyou 😁

  • Sometime ago I wore some leggings that were vertical white and black stripes before the use of the sunlotion and the pattern was unbelievable.Imagine the pattern you show in photo but with added intensity on the  1"stripe where the black stripes were.I so wish I had mustered the courage to take a photo lol.

  • 😂😂😂 you sound just like me!! X

  • Hi, that also looks a lot like livedo reticularis which goes along with antiphospholipid syndrome. It's a serious condition that causes blood clotting and miscarriages in women. Many people with lupus also have aps, myself included. I've had 2 pulmonary emboli and I have to take anticoagulants. Hopefully your doc has tested you for it.

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