Hi all, I don’t know if you get rashes in the winter as I’ve not been diagnosed with the full blown skin Lupus until this summer although they thought I had the start last year. But it’s just on the face and now started on my legs, but my face is getting worse. The creams are not doing anything.
Does anyone else get it in the winter (and it’s raining)
Thanks
Teanna
My rash once it started it kept going through the winter until I was diagnosed & treated with medication. I had a biopsy which helped clarify the lupus diagnosis.
I am very conscious that there is UV light throught the year & even in shade outside & still slap on 50 factor on my face & cover up... some folks are even more sensitive then me, so may just feel sick from uv exposure...
I have so far controlled my rash since the worse of it, but not the diseases (others as well) with medication & covering up...still get fatigue etc..so each of us have different tolerances..
Hope you get it controlled soon....ml
Hi Teanna
Yes I get rashes all year round but so far I've not had the rash on my face..I'm diagnosed with SCLE n have found that UV n flourescent lighting trigger off n make the rash worse!! I have rashes everywhere else n I'm on treatment which has improved them somewhat but I'm still constantly fighting to get them under some sort of control!!
If you're very light sensitive be aware of reflective surfaces such as water or snow as well coz they reflect UV rays!!
If u have a look at the Lupus UK website n check out the eclipse page..they have some very interesting tips n loads of info on light sensitivity!!
As maggielee says suncream all year round n I still wear my hat n keep everything covered whatever the weather.
U mention creams not working on your rash but I'm not sure what your taking internally for lupus..I'm on all the usual meds too..hydroxy..pred..n immunosuppressant called ciclosporine..I have Dermol 500 lotion which is light n easy to apply..u can wash in it as well using it as soap substitute..n then steroids ointments of different strengths!! Talking of your face..be very careful about what u put on it..many of us have reactions to chemicals in beauty products..I can't use any soap n rely purely on the dermol lotion..u can get it on prescription or buy in the chemists.
Hope this helps xx
Hi Teanna,
Have you requested a referral to see a dermatologist?
UV light is an important trigger for many people with lupus. Even in winter months, UV light is penetrated from the sun. It is advised that people with lupus wear high factor sunscreen throughout the year. UV light can also be emitted through certain lightbulbs, learn more at lupusuk.org.uk/coping-with-...
If you haven't already, you may like to read our booklet on lupus and the skin at lupusuk.org.uk/wp-content/u...
Please let us know how you get on, best wishes!
I have had this badly recently with all the rain, but I am electro-sensitive and rain is a good conductor, but I also suspected a virus
Thank you for your advice. Yes I’m under a Dermatologist, and because I’ve just had a biopsy and it came back as being really sensitive, and they changed all my creams and suggested the uv for my windows etc. But I was not told about the winter with the UV. I’ve have an appointment in a couple of weeks, the creams are not strong enough plus I find my skin looks like rubber.
So thank you all for your advice.
Have a nice week to all.
Teanna
Although I’m using the creams I’m also taking Hydro..... and I’ve just finished a course of 3 mths of oral steroids.
Thank u all
Teanna
Hi. I am sure your Dermatologist will de able to find tje best treatment for you. Be patient but constant.
I have systemic lupus, maybe 1 year my skin was bad, when I had thenfirst flare and started taking medication.
Indoors light emit UV, try to pay attention to the effect that they have on you. In my previous office there were some halogen lights that gave me a rash if I spent many hours under them. I have LEDs in my bedroom and they don't cause me a rash. Some hospital ligjhts just make me feel tired.
I only use cosmetics for sensitive skin or hypoallergenic. SPF 50 all year round, but they have to be "mineral" sunscreen with titanium or zinc oxide, higher content is better. "Chemical" sunscreens give me allergies and make my skin break. I suggest you to read about that and check with your Dermatologist.
Wish ypu well!
Samantha
Hi all. I hope everyone the best of health in these days of horrible days of wet and cold weather?
I’ve not yet joined the Lupus UK as I need to get a new phone (this one has had it).
I know I seem to be all doom and gloom and I really do apologise, but I’m finding it very difficult to think positive (I’m not feeling sorry for myself), but I’ve never suffered from fatigue, tidiness, and I’m cancelling hospital appointments because of the lack of energy. I also suffer from many illnesses and I try not to let it get to me (but being in pain 24/7) does not help. I also suffer from loneliness, it’s the worse thing ever. I have children but they live quite away, but I do have a carer but she has her own life. I know clubs etc cater for the over 70’s etc. I do have hobbies but because of the weakness in my hands I can no longer do them. I’m not asking for sympathy, but does Lupus make you feel tired. I’ve got many auto immune problems, (under active thyroid), APS, Liver failure, Lumber facet joint disease, depression etc. I’m sorry that this post is a very dismal one, but I just wish I could lay down and sleep.
Again I’m sorry to all, but I don’t know if it’s just me or my health issues.
Hope everyone is having a enjoyable weekend.
Teanna
Hi Teanna 🤗🤗
Gentle cyber hugs from me 🤗🤗
It sounds like you're really going through it currently..I feel for u xx
Firstly I'd mention that u might want to post this question up as a new post because I've just come across this..if u post it up as a separate post more people will see it on their news feed.
Lupus UK can be contacted by telephone or u can write to them n they will send out an information pack to u. Membership is £10 per year n they publish a quarterly magazine that's very informative!! I can send u the address if u wish?
Yes lupus can be very debilitating n I agree that it can be incredibly lonely!! However u r not ALONE!!
Fatigue is awful..much more than being tired..n really there's not much more u can do other than rest coz it's sooo totally exhausting!!
R u on any internal meds? Before I was seen by dermatology I was in a bad way..my skin was a mess n I had ulcerated feet n hands!! The fatigue was at its worst n I have been been known to sleep for 17hrs straight..n I still woke up feeling tired!! This however is when I'm flaring!! I'm now on medication that helps with my symptoms n I'm thankfully able to do a bit more ..but when fatigue hits me I must rest otherwise it just gets worse!! 😔😴😔😴
I think it's a good idea to invest in a new phone..treat yourself!! I have two children (grown up now with their own lives) n I don't have much physical contact because of long distance but I do have regular contact thanks to the internet!! Im in contact with my youngest daughter almost daily n she sends me videos n voice notes that cheer me up no end..I call her my lupus friendly ray of sunshine!! 😹
What hobbies do u do? I know that u can't do them at the moment..I've been there too..but I've recently got to the stage where I can use my hands again so I'm just doing some sketching n it's such a relief..at one time I couldn't open lids on my many creams n I couldn't use a knife n fork..I had to have special cutlery..but currently I'm happy to say that I can manage a bit more..it's a real boost to my confidence!!
It is very isolating living with autoimmune disease I agree..n it's incredibly difficult to get to appointments but if you're flaring or unmedicated it's important that your doctor's see u at your worst!! I have been seeing my dermy for a good few years now n I always got the impression that he thought I was making a mountain out of a molehill..until he saw me in full flare mode last year!! Now he's totally on board with trying to manage my symptoms. So if u can show docs what your going through..it seems to convince them that lupus really is an awful condition!!
Right that's it from me for now..I've worn myself out..n it'll probably wear u out reading this!! 😹
Kat 😽😽 xx
Hi Kat,
Thanks for such useful info. I thought I was going mad. I’m seeing my dermatologist next week, so agar the creams are no good, so it’s trial and error.
I thought I was getting lazy (but now I know I’m not alone). I can’t sleep because of my back, so I’m cat napping. I’m not aloud string painkillers because of the Liver.
I had a procedure done on my hand, sadly it did not work. I loved painting and at the start of my illness, I did my pre access, access, foundation, & BAHonsin Art & design, 9 city and guilds in photography, then I started to make jewellery, then it suddenly come to a halt. I can’t even grip a pen. I can’t open any lids, so realise what u got until it’s gone.
Thank u for giving me your time and replying. I shall invest in a new phone as I could not see the top of this page, so I know what to do.
Do you live in the uk?
Thank you again
Teanna
Sorry for the spelling because I’m on the quick texting, I should check bt it hurts to hold the phone, so I quickly text as fast as I can.
Thank you
Teanna
Ah so your a very talented lady!! So frustrating when the hands don't work I know!! 🤗
So coz you've got problems with your liver I suppose they've gotta be careful what meds to prescribe for u. I'm on loads of meds but my livers in pretty good shape at the moment 🤞n the combination that I'm on seems to have my symptoms under some sort of control!!
Pain oh my!! Constant pain is enough to wear anyone out!! So u can't take much in the form of painkillers either 🤦
Yes I'm in the UK!! Another thing I'll mention is that with lupus UK they give u a list of contacts..people who have lupus or care for someone with lupus.. they're trained so they give advice over the phone if typing is an issue. They also have support groups in certain areas but you'll have to find out if there's one in your area..again if u post this up again Paul or Chanpreet might reply n give u the links to blogs n that..I'm not that cyber savvy unfortunately!! 🤷😹
You're not going mad.. you're lupie..but deffo not mad!! 😹🤗🤗
Kat 😽😽 xx
Hi Kat, you have certainly put a smile on my face. Yes your right, I can’t take to much meds because of the Liver, I wouldn’t mind if it was my fault but it was the doctors not knowing what the other one was doing and before i knew I had Liver failure, and they have admitted it. Although I’m only taking 2 paracetamol twice daily and oramorph, 3.5ml when req, bt that don’t touch the pain. I have 2 thinner injections for the APS, I’ve had many DVT’s and PE’s, the under active thyroid, the doctors stop that, but my GP put me back on it,. I’m allergic to many things, no ASAIDs, soaps, shampoo’s etc. I was also told that I’ve had a back operation L4,L5, & S1. And now I have Osteoporosis. Also a few other problems but I will not bore you.
I just feel I need to talk to others like yourself that understands. Although my mum has Lupus but she has it minor and she only uses a sun screen so she does not get it.
As I said, I shall purchase another a phone and join the group, it will be great to chat to others.
Again I thank you very much for taking time replying to my moans and groans.
Have a lovely Sunday, and again thank you.
Regards
Teanna.
Awww bless ya 🤗no need to apologise for moaning n groaning..I do plenty of that!! On a daily basis!! 😹
U do have an awful lot to contend with..I'm sorry to hear that you're so unwell 😔
I too am very allergic to soaps n water...n I can't take Nsaids either..I take paracetamol 6 per day n I'm prescribed tramadol for when I need it..but as u say u can't tolerate many meds 🤔
Do u get about much? I live a reclusive life mainly..I don't go out unless I have to..sunlight makes me ill..I'm in a wheelchair when I gou out n it seems soooo much harder to plan even a trip to the docs with all the systems that have to be in place..I have to rest the day before I go out..n then again for a couple of days afterwards!! Mind u I went to the docs last week n she gave me a thorough MOT!! Oh my I was in the couch..off the couch..n then on the couch again..getting undressed n then dressed again..I felt like I'd done a full aerobics workout!! I needed two days to recover!! That's the thing I find..I try not to go to the doctor's if I can help it coz u never know what they're gonna do to u...n once your there u can't escape!! 😹😹
Lupus eh? The lupus umbrella is huge n we're all under it..however we're all unique!! So as u already know it affects some less n others more!! For instance I'm diagnosed with cutaneous lupus so it's mainly my skin that's affected n my internal organs r ok currently..but I'm on all kinds of strong meds before I got lupus I wouldn't take a pill for a headache..in actual fact..I didn't even get headaches!! 🤔 Now I'm popping pills left right n centre!! 😹I have regular bloods done though coz I'm on immune suppressant n hydroxychloroquine..so they're keeping an eye on me!!
Definitely treat yourself to a new phone Teanna coz this site is fabulous!! Informative..supportive..loving..caring for each other as we all hobble along the autoimmune highway!! 😹😹
When I was diagnosed I wasn't on the internet..n I hadn't ever heard of lupus..I was trapped in a flat..long story..totally isolated n I got very depressed!! Finding lupus UK n this site has given me a better quality of life n yes friendships develop with people who understand what it's like living with this 💩 24/7!!
The forum has become an everyday thing for me now..I have a read of the posts n join in when I'm able..which has been quite often lately!! 😹 I don't know if u read posts everyday but we recently have developed a crafty interest!! People have been sharing their achievements n oh my were a talented bunch!! If u check out my profile you'll see my posts which include wood carvings that myself n hubby have created..if u check out Stiff19 n Spotty-ewe profiles u will see more art!! Fabulous!! Were focussing on what we can do rather than what we can't..ok we can't do them much of the time but it keeps the spirits up!!
Even following conversations gives pleasure n my oh my I've learned soooo much about lupus..now I can ask appropriate questions n feel a little bit more in control of things!! I NEVER thought I would ever be more like the old me..I literally thought my life was over..but by chatting to other lupus warriors..it's driving me forward!! Ok I'm not the same n things will never be as they were but hey I'm starting to accept that this is the new me!! 😴😉
U can get something called Siri on phones..like I said I'm not cyber savvy but some of the forum members use it rather than typing out their posts!! Don't know if you're able to check that out!?!
Gentle 🤗🤗🤗to u lady..things can only get better...right??? 🤔🤔🤔
Kat 😽😽 xx
Hi Kat, I don’t know much about lupus (which I have the skin one too), but I never knew how much it effects my daily life. My mum (becoz she has it very mildly), don’t or won’t give me any info. As I said to my family, it’s not contagious, but becoz mine is worse on my face, I’m not looking for sympathy, but learning how to cope with it.
I really miss my hobbies, I was always doing something. My last project I start to make christening bracelets (sterling silver). My family all clubbed together and brought me a complete studio from paints, jewellery tools and gems, card making machines etc, and I can’t do any of it, the latest sterling silver clay, when dried its 99% per sterling. As I said, I did have a procedure done a month ago but it didn’t work, even the Ulnar nerve which is trapped in my last 2 fingers and slightly the index finger is now distorted and is freezing cold, is getting worse but they will not operate as it’s to dangerous. I’m hoping to find a group around my area which I can get advice etc.
What I can’t understand is that, when it’s dull and pouring of rain, I still get sores on my face, so I can’t go out in the garden under the canopy for fresh air, it drives me crazy. 😡😡!! My son did buy me a laptop, but I that hard to use, even with a wireless mouse. I wished I knew how to but my work that I did before all this started, online.
I must join this Lupus site to get some info etc. My GP is great but I don’t think she knows much about cases like mine, she always says “I’m to complexed”, but with the fatigue that goes with it, she’s not that clued up.
But u have given me some hope, and hopefully get some info that could make life easier.
Thank you again. Hopefully we will keep in touch.
Teanna
Do u wear a wide brimmed hat when u go outside? I have rashes all over my body much of the time..actually I can't remember a time when I didn't have what my dermy calls 'lupus activity'..but my face is the only place that I don't have a rash!! However I do wear a hat whenever I go out..anytime of year!! Can u put sunscreen on your face..I found that a mineral sunscreen is best for my skin..other creams r too heavy!!
I invested in a UV brolly this summer n it's fabulous..normal size brolly with two layers so it protects from sunlight n the rain!! Result!! I use mine all the time..worth every penny!! It cost about £15 n I got it from Amazon..if u decide to go for that option u could get out in your garden?!? The other thing with mine is it's got a handle on it that I can put on my wrist rather than holding it..I have problems with ulcers on palms of my hands n fingers so sometimes I can't really use them at all. I dress them as n when n I always have to wear gloves outside..I've got some cotton gloves that I cut the end of the fingers off so that I can still type..sketch..or whatever I need to do!!
Oh so it's the ulner nerve that's damaged n then distortion in your index finger..is this all on your dominant hand? I'm right handed n much of my spazy stuff is on the left..so I can still use my right..although I'm limited at times!!
I'm with u on the laptop!! I can't use the blooming things..I'm much better with my phone!!
What's your lighting inside? I've found that I'm extremely sensitive to flourescent lighting n led is too bright..so after reading the eclipse link on lupusuk I found that some of us react more to ultraviolet which is obvious to most of us..but I've now got warm white led bulbs which r closer to infra-red!! Less harmful to our skin!!
I mean they generally say that cutaneous lupus doesn't affect the major organs..I would say that the skin is our biggest organ..keeping us together n preventing infection..n when it cracks n weeps it's incredibly painful!! Any normal person knows it when they cut themselves or get a blister etc..but what we have to endure would try the patience of a saint!! 😠😠😠
Do u use Dermol 500 lotion..it's really light n I use it for moisturising before I put my heavier steroid creams on. The good thing about Dermol is it comes in a pump dispenser so even if u can't pump it with your hand..u can use a wrist!! The other great thing about it is u can apply it whenever skin feels irritated or sore flaky etc!!
I hope u haven't given up hope of ever doing anything creative..ever again!! Hold on to the thought that you're an artist n u have amazing talent..ok right now you're in the wilderness..but u definitely sound like a warrior to me!! 🤗🤗 In time u will find something that u can achieve..n believe me it's fab to get some kind of ability back!! I used to do chainsaw carving with hubby n we went off grid n lived on roadsides for four years..in a horsebox that we converted into a cosy home!! The four years that we were on the road were the coldest..most freezing winters..n wet wet wet summers!! Even our friends who work in woodland environment laugh with us now n say we picked the worst four years as far as weather was concerned!! 😹😹 I mean I was up for some ray mears..but what I got was bear Grylls!! There's no way I will ever be capable of doing anything like that again..but we all have to adjust to what we can do at any given time with this lupus stuff!!
Your going to dermy appt next week..maybe ask for Dermol lotion if u not on it already..n if u want to PM me n let me know how it went..understanding of course that it might take me a while to get back to u..but I will at some point!! 🤗🤗
Right that's it from me..I've gotta go!! It's been great chatting to u 💐
Take care 🤗
Kat 😽 😽 xx
Hi Kat, just to let u know, yes I do use Dermol, then Betnovate D, then the moisturiser. They have changed my creams so many times I’ve lost count. I have to use a different one on my body and another on my back. My worse area is my face. I will invest in an umbrella from amazon, there is a UV canopy from Argos £280, it 3m x 6m approx, and it fits on the outside of my Door and window, but I shall look elsewhere first. My face have big sores, and around my ears, chin, cheeks, and eyelids. I have a sunscreen for especially for Lupus/cancer patients, bt it still don’t give me enough protection. But I will try the light bulbs.
Thank you for your help, and I hope you have a good week.
Teanna xx
Just a quick note, I’m also in a wheelchair, as for using Siri, becoz of sore in my mouth, it never understand me, so I give up.
Enjoy yr week as much as you can. 😊
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