The rash that got me diagnosed with SLE - LUPUS UK

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The rash that got me diagnosed with SLE

Spotty-ewe profile image

Hi lovely Lupies,

After chatting to Diane (EDD) about rashes recently I thought she and some of you might be interested to see the progression of a head to toe rash I had 10 years ago which led to my diagnosis of SLE.

It all started with a fungal toenail for which my GP prescribed Terbinafine tablets. After being on it for a month a few spots started appearing on my back. We were due to go to Canada for 3 weeks to visit several friends on Vancouver Island. My GP gave me a cream to use and wished me a happy holiday.

Well even on the day we arrived the rash began to spread (first photos) so I stopped the Terbinafine straight away, but 4 days later it had got worse and extremely itchy and unbearable (middle photos). So our holiday was spent back and forth to doctors, hospital, and dermatologist. The rash merged together as seen in the last photos and was all over my body, arms, legs and even face. I felt so awful with it and unbearably itchy and hot. 😩 I drank cool camomile tea with honey and hubby spread honey all over my back before I took a cool bath or shower 2 or 3 times per day. It meant we couldn’t stay with friends as we’d intended, because I needed to keep spreading honey or Dermavate on the rash and keep showering.

So our holiday was ruined, but as hubby (ever the optimist) said it was a blessing in disguise because if this had never happened I might never have been diagnosed and the ‘mystery illnesses’ and symptoms I’d been having for many years might never have been explained. The Canadian dermatologist suspected SLE but tests he needed to do to confirm it wouldn’t have developed/matured before we were due to return to UK. So the Dermy in my local hospital here continued the testing for SLE and it was confirmed.

It is now in my notes that I have an allergy for Terbinafine but isn’t it weird that it took a whole month before the rash began?🤷🏼‍♀️ It is probably also why it took so long for it to get out of my system again.

Has anybody else had a similar experience?

Hoping you are all as well as can be.

Love and hugs,

Spotty 💕🤗xxxx

41 Replies

Oh my goodness Spotty that just looks so painful and uncomfortable. It is so angry. Do you get it this bad now? I am so very sorry it ruined your holiday too. I think you should take these photos to every single consultation you go to and if any doctor says something dismissive or patronising whip them out and shove them under their noses. Big Cwtches lovely xxx

Good idea Cecily. 👍🏻 Do you know that when my GP referred me to the Dermy when we returned from Canada the Dermy said I could wait as he wasn’t concerned about rashes!!??🤷🏼‍♀️ My GP was furious and told him it was an emergency so he reluctantly said he’d see me. When he did he whistled and said, “Wow, out of 10 that is a 9!” Well I’d hate to see what a 10 out of 10 is like because this was bad enough! 🤣 It was so incredibly itchy more than painful. I just wanted to rip my skin off and didn’t know what to do with myself. 😩 Thankfully it never gets beyond the first stage now when I flare because the Rheumy straight away gets me on Prednisolone, Dermavate ointment and raises the Hydroxychloroquine which stops it progressing any further. But it was a nightmare and took ages to heal. A retired ward sister I knew (passed on now) advised me to use Aqeuoscream in place of soap when showering and to use it even to keep the skin moist in between showers, and that really helped too. But yes, I’ll definitely keep the photos in my handbag for every consultation.😉 How are you keeping these days Cecily? I hope you are coping with the heat down your way?🥵 Big hugs back if it isn’t too warm for them. 😆🤗xxx

I hate itching. My skin is so dry it cracks and I use tubs of thick lardy cream twice daily. I am like a sheet scratching my back on the doorframe lol. I am recovering from a very nasty fall. Since I tore my hamstring my leg keeps giving way. In January the physio said I was too weak to exercise standing up. I am waiting for an MRI but two consultants are quarrelling over who pays for it 🙄.I started pulmonary rehab six weeks ago and to my delight I am getting stronger and managing twenty minutes on the treadmill. I was so confident I went out to water the garden without my sticks. Well that was a huge mistake. I face planted a large ceramic pot. I managed to put my arm up to shield my face and landed hard. My arm, breast, underarm and both legs are badly bruised. Worst still I was lying on the grass soaking wet ( I had held on to the hose) for an hour while my fall cushion charged up. I learned two things, don’t be stupid and go out without your sticks and to keep my fall cushion charged at all times. I started back at rehab yesterday but could not do a lot because of the pain but I was determined to complete the course ( last day tomorrow). It is never too hot for a Cwtch xxx

Bruises

Oh Cecily! That looks VERY painful and I can imagine the other places you damaged in your fall will be just as bad. 😩 I’m so sorry you went through that. Pleased to hear the pulmonary rehab has been so successful and hope this accident hasn’t set you back too much when you were doing so well! 🙏🏻 Pity it ends tomorrow but I hope you can manage to keep up the treadmill. 20 mins is brilliant!👏🏻 At least you have learned something from your nasty fall but talk about learning the hard way! 😩 That was dreadful. The other thing to remember another time is to either let go of the hose when you fall or take a brolly with you! 😉 But joking aside I hope you make a speedy recovery.🙏🏻 Was Neil home at the time? I bet he got a real shock seeing you lying there. Please take care dear Cecily. Loads of big hugs. 🤗💕😘xxxx

Ha ha drop the hose next time lol. Yes Neil heard the bang and came rushing out. I was shaking like a rat and moaning in pain. I have had 28 falls since I tore my hamstring last March but this was the worst. I have two lumps the size of gobstoppers in my left breast and my armpit is black and blue. To have smashed my knees was the most painful thing. The worst knee has a hairline crack and of course had to be the knee with the torn hamstring. Exercising, walking, even sitting down is so painful. Of course when I fall I cannot get up because both knees are bone on bone so I have to lie there and get rolled onto my cushion to lift me up. I thought Neil was going to have another heart attack when he tried to inflate the cushion and the battery was not charged bless him. He starts cardio rehab next week and my Little Dylan has his testicles removed as the vet found a tumour. After losing Brodie last month we are terrified but he is a strong little boy . You take care of yourself lovely and don’t forget those photos for the doctors xxx

That is a LOT of falls Cecily in such a short time.😳 And what a lot of damage you’ve done to yourself. 😩 Have you seen a GP or anybody? I’d hate for a blood clot from these injuries to cause yet another problem. Might be best to get a professional check over and opinion. I’m pleased to hear Neil starts his cardio rehab next week. I’m sure he’ll find it very helpful - I know my hubby did. And poor wee Dylan too going for his big op. 🥺 He will no doubt benefit from his surgery once he recovers from the actual op. It is only natural you’ll both be worried about him especially after losing Brodie so recently, but the Vet wouldn’t perform the op if they didn’t think he’d survive it. So keep the faith and I’ll be praying for him too. 🙏🏻🙏🏻😇 Take care Cecily and please get those injuries checked. Thinking of you. 🤗😘xxx

Thank you so much. I actually did see a GP a few months ago because I was falling so much and she sneered and fat shamed me. Shrugged a lot and said nothing I can do phone orthopaedics not that they can do anything with the size of your knees. I did let her have it and came out, had a cry then made a formal complaint. My GP surgery is still refusing to see anyone unless it is an emergency. The standard response to saying you feel unwell is go to hospital but there is a 7 hour wait in A&E. No wonder people are flocking to the hospital when they can get no help from the GP. Xxx

I remember you telling us about that disgraceful GP. 😡 I hope she was reprimanded for being so callous and judgmental. I’m so glad you told her what you thought and made a complaint. 👍🏻👍🏻 But perhaps it would be worth speaking to a different GP and ask if it is safe for you to take a simple blood thinner such as enteric coated aspirin while you are healing to prevent a clot travelling? It would be best to check to make sure the aspirin doesn’t clash with any medications you are on, or perhaps a pharmacist could advise?🤔

Our GP surgeries are the same - emergency only - and your GP makes an appt there and then while you are talking to him/her on the phone. All very odd. 🤷🏼‍♀️ Take care lovely Cecily. 🤗😘💕xxx

I am on aspirin and have been for 13 years due to anti phospholipid antibodies. Do you know I just cannot face yet another fob off sadly. I will heal as long as I don’t have another bad fall 🤞🏻🙏🏻 Xxx

I’m on it too for the same reason. I don’t blame you not wanting another fob off along with insults and rudeness, but it sounds like you’ve got it covered with the aspirin anyway. I’m pleased and relieved to hear that Cecily. Keep that fall cushion charged up, your sticks to hand, and take more water in your drink 🤣 and I’m sure you’ll be fine. I’m just a worrier but I feel happier about it now. 👍🏻Take care Cecily. Love and loads of hugs. 💕 🤗🤗😘xx

Bless you for caring. I cannot even say I drink now as having alcohol is a rarity these days lol. You take care of yourself too xxx

O my holly cow, , my dear sweet friend, that is just so painful, and as Cc said it, Angry of a rash. How did you ever get that to calm down? You poor thing, what a journey you have been threw. I spelled threw, because you really went that way. My SLE rashes came on my face, abdomen, and thighs. Like pointy prickly thorns. I did not have a cell phone back in the day, so no photos to show now. I found to be allergic to Bactrim, and Septra. and a whole other list. May I ask, what is Terbinafine... I hope you are getting on there, and always sending you my love, blessings, and storm licks. Xxxxxxxx

Spotty-ewe profile image
Spotty-ewe in reply to thestorm

Aww, thank you Stormy. 🥰 So sorry to hear you got a nasty rash too and it sounds as though it was painful. 😩 What we Lupies have to go through eh? Hubby took the photos with our camera - they were our holiday snaps!!🤣🤣 I’m allergic to the antibiotics Trimethoprim and Septrim, as well as Terbinafine which is a drug used for fungal nails. I’m not doing too badly thanks Stormy. How are you? Sending you love too 💕. You and Storm are so often in my thoughts and always in my prayers. 🙏🏻😇 Big hugs to you both. 🤗🤗💕😘😘xx

thestorm profile image
thestorm in reply to Spotty-ewe

Sweet Spotty, we are hanging in there, as the poster says. I posted yesterday, as I am still in a huge slump. But, we march on, LOL...... I see, so we both have antibiotics we are allergic to. So sorry the photos were taken on your holiday. I wish I had some photos of my earlier rashes to show the specialists. Keep your fingers crossed, as Storm will get a grooming at the groomer who injured her back, he goes on Thursday. He to has been a bit under the heat weather, like a grumpy Eor, he now has a callouses on his front elbows, no hair there, it is quite odd. I put some cream on it. And, his molting is non stop. He is uncomfortable. So hopping groomer can be patient with him, and ease his burdens. Aside that, we are just sooo very HOT here, and I pray from relief soon. How are you doing my dear one. Be better, much Love, and Strom licks Xxxxxx😇😂🥰🥰🐕‍🦺

Spotty-ewe profile image
Spotty-ewe in reply to thestorm

I just saw your post Stormy and have left a message there. I hope Storm’s grooming does happen and that it makes him so much more comfortable. 🤞🤞 The heat must be awful for him - so exhausting and uncomfortable - poor boy. 🥵 Hopefully he’ll be like a young pup again after his grooming and the removal of all his excess fur. 🙏🏻 He’ll be Mr Happy instead of Mr Grumpy then! 😁 Loads of love and hugs for your both. 💕🤗😘xxx

I was exactly the same as you, Spotty!!! Right down to the month delay and a holiday (on a Danube river cruise!) Terbinafine should be banned! Although as your husband says it brought everything to a head. I finally got an appointment with a sympathetic GP who got me an emergency appointment at dermatology. Other GP’s simply said I’d had a bad allergic reaction and I was ‘over the worst ‘. 😹😹😹 idiots. However I am still only diagnosed with SCLE and Sjogrens Syndrome, but as I’m on mtx, hydroxy and pred it is keeping everything under control. I have had a couple of bad flares but I now recognise it developing and hit it with an increase in prednisolone.

Scle rash covering my back
Spotty-ewe profile image
Spotty-ewe in reply to Barbara17

Terbinafine definitely doesn’t agree with AI conditions, but a friend who had really bad fungal nails swears by the stuff and asked his GP to prescribe another 6 months of it! 😳 Not for us!! So sorry you went through the same as me Barbara. and why does it happen when we go on holiday?😩 Did you have a vaccine before you left? I had one and wonder if that exacerbated the problem. 🤷🏼‍♀️ What idiots right enough to think your awful rash was just an allergic reaction!!😬 Thank goodness for our good GPs! Glad you are able to control your flares more now with the increase in Prednisolone. 👍🏻👍🏻 How are you doing this summer? I remember you had a bit of a time of it a couple of years ago when the rash hung around for ages. I hope you don’t get that again.🙏🏻Take care Barbara. 🤗😘x

Barbara17 profile image
Barbara17 in reply to Spotty-ewe

🤞I’m ok at the moment, thanks. I never venture out now without factor 50, scarf, hat etc etc. and if a rash starts I increase the pred for a few days. And of course if the sun does appear I just wait 5 minutes. 😂 I didn’t have a vaccine but I did colour my hair before the holiday and I think that made it worse. I’m now terrified to use anything on my hair so I’m fashionably grey. 😹

Spotty-ewe profile image
Spotty-ewe in reply to Barbara17

Yes, your precautions sound much the same as mine.👍🏻 And yes, in Scotland we don’t have to wait long for the sun to disappear again. 🤣🤣Hair colour is a good point. 🤔 I never use it during flares and then proceed cautiously doing the allergy test before using it again. But going fashionably grey sound a smart move. I’ll think about that. Take care Barbara. 🤗xx

Oh my goodness spotty you poor thing, how awful for you, it sounds and looks dreadful and yes that’s just what my dads was like from head to toe especially the bottom pictures, I remember it as clear as day, he was admitted to hospital and I took him down to the dermatology department, the (elderly) dermatologist bless him had Parkinson’s and was shaking quite a bit as he was writing his notes, after the appointment my dad said he thought maybe he needed the bed more than him🤦‍♀️!

Anyway that’s also what got him diagnosed with SLE and onto the right treatment but he’d never had any problems before he had thyroid cancer and had to have radioactive treatment for it, it was after that his health deteriorated , he was 74 and passed away at 79, it was a very tough five years for him but what was ironic was about a week before he died he got the 5 year all clear from his thyroid cancer! I can’t help but think it was something to do with the radioactive treatment he’d had that sparked it all off.

It’s obviously a genetic thing going on with us as I have MCTD ( I’m still not convinced that’s the correct diagnosis) and my daughter has APS, I also wonder about my dad’s brother as he had a bad stroke at the age of 50 and struggled with his health for many years, he had problems swallowing and had to frequently have his oesophagus dilated, I believe this can happen with scleroderma, maybe something was missed with him !

Thanks for sharing the photos 👍 I think your hubby was right, a blessing in disguise but oh boy that’s extreme isn’t it😖 so sorry you had to go through all that and on holiday too 😢

Big Hugs 🤗 💕🌸💕🌸💕😘xxx

Oh your poor Dad. What a lot he went through. 😩 I had to laugh at his elderly dermatologist though. Poor man. 😆 My local one was elderly too and brought back in from retirement! There must be a shortage of Dermatologists! 😆My Mum passed only 4 months after her 80th with heart failure caused by her diabetes. A long and slow end to her life, spent mainly in hospital. So not a great age by today’s standards for either your Dad or my Mum. These things do sound genetic and I’m so sorry to hear your daughter has APS. Hopefully with advancing medicine we’ll get better help and treatment than those before us.🙏🏻 We can but hope.

I hope it is going well with the builders. 🤞Take care Diane. Love and hugs.💕🤗😘💐xxx

So sorry to hear about your mum, it’s so hard to watch our loved ones endure a long slow end to their lives isn’t it, my sister in law is going through it with her mum who’s very poorly in hospital, she perks up and then declines, perks up and so on , it’s quite an emotional roller coaster 😢, I had it with both my parents…makes me dread getting old😞.

The front path is looking good thanks , they’re half way there, when they’ve finished that they’ve got to knock a hole in the garage wall for a door so they’ll be here a while yet, I don’t envy them working in the heat, it sounds like one of them had heatstroke last week as he was quite poorly on Friday so they didn’t turn up which was ok because it meant it was quiet for my daughter’s first day post op.

Take care Spotty

Love and hugs back 💕🌸🥰🌻xxx

Thanks for your understanding Diane. 😘 It definitely is an emotional roller coaster. I’m sorry both your parents endured that horrible kind of end too. Very sad. My Dad was very poorly with prostate cancer for even longer than Mum’s end of life. Mum nursed him at home with the help of 2 daily visits by the district nurse. I was with both parents when they died in their own homes, which I was glad to be able to do for them, but it was very traumatic for me.😩 Hubby put his arm around my shoulders at Mum’s funeral and said, “We are both orphans now!” At 51, as I was then, it did make me smile through the tears.I’m glad your daughter’s op went ahead this time. 👏🏻 How is she doing? That was fortunate that the builders didn’t come on her first day recuperating after the op. 👍🏻 I hope she makes a speedy recovery.🙏🏻

Good to hear the builders are making good progress.

Take care Diane. 🤗😘💕💐xx

Yes it’s really upsetting, my dad collapsed at home and the paramedics were there when we arrived, there was nothing that could be done, I was 39 and he was a darling man that I miss dearly, I felt I hadn’t had him for long enough, my mum passed away 12 years later and that’s what I said as we left the nursing home ‘ I’m an orphan now’, I was with my mum as she passed, my daughters, son in law, brother and sister in law and hubby were all out of the room at the time, I called my brother in so the two of us were with her, we all were in the room after and my lovely son in law said prayers for her so it was lovely she had us all around her. It’s a strange world without our parents in isn’t it. I miss them both dearly and am truly thankful to have had such lovely parents.

Thank you🙏 yes my daughter’s doing very well, the first few days were tough but she’s doing much better now, lots of resting but also having little walks out too.

Hope you can have a good day, looks like a hot one here. ❤️🌸🥵🥰💕xxx

I fully understand and agree with what you say about not having them long enough when they pass. My Dad was 50 when I was born so wasn’t a bad age when he passed, but I was only 33 so very much felt the same as you. My Dad’s reminiscences of working on the land with horses, of what school was like when he was a child and life generally in the village where he grew up, are what got me interested in local/social history and I still miss him and my Mum sorely. Although I am 67 next month I still feel there was so much more to learn from both of them. That was lovely for your Mum to have her children with her as she passed and then all the family around her afterwards. 🥰 Very special.

Sorry to hear your daughter had a rough start to her recovery but I hope it goes smoothly now and that she feels a little better with each passing day. 🙏🏻

It is breezy, overcast and cool here today but at least it is dry!😁 Enjoy the rest of your week Diane. 🤗😘🙏🏻💕💐xx

Yes I’m sure there was still much to learn from them, there’s always things I wish I could ask them.

It’s very hot here, I’ve just sat for 15 minutes in the shade of the parasol with factor 50 on and my arms look sunburnt, I haven’t even been in the sun! 😖

Take care, catch up soon 🤗🥰💕🌸xxx

I’m sending you some of our cloud and breeze. 🌥☁️🌬 Hope it helps. 😉 🤗😘💕xxxx

Oow yes please 😂😊🥰☁️🌻xxx

OMG Spotty 🤗🤗Awful rash you had there n I especially grimace coz I've been there too!! With me though it was Flucloxacillin that caused me to break out. Funnily enough I had it prescribed for an infection in my feet. The soles of my feet were breaking down n a swab revealed I had infection in the lesions. I was prescribed max dose of fluclox for ten days..I had thrush as side effect (lovely)..however the doctor then put me on a further maximum dose for ten days on the follow up appt n that's when my body reacted badly!! This was back in 2013 and I ended up in hospital for four days. I was living in the truck then and the doctors wouldn't let me go back to that environment. I was asked if I'd touched poisonous plants..had I drunk any unpure water etc!! They were talking about Stephen Johnson's syndrome. In casualty I had loads of medical staff coming in constantly to have a gander at my rash!! On the ward round the docs came round..took one look at me n said "We are gonna leave you for the dermatologist" 😹Wide eyed baffled doctors is not what u need when it's all so hot n itchy..my temper was ever present at this time I can tell u!! 😤

I had a biopsy done by dermy n I was prescribed Pred for the first time ever..Dermovate ointment n Dermol lotion to wash with n moisturise. The Pred made me feel awful at first tearful then angry mood swings..I told the sister on the ward when she was putting ointment in my back n she said yes they're all side effects of the Pred. I couldn't sleep..it was awful!!

Even worse was when the rash started healing n the skin started to fall off in flakes..some of them were like cornflakes!! Every time I moved round my bed I left a trail of cornflakes!! So embarrassing!! 🤦

The biopsy came back n dermy said that I was allergic to Flucloxacillin n that was that. I wasn't diagnosed with SCLE until 2017 but I now believe that I've had lupus since I first had shingles in 2009..so I think I did have lupus at that time but of course it wasn't being considered.

Thank you so much for sharing with us Spotty. Showing rashes is always difficult but it does help many members of this forum at the same time. When I show mine I feel like I'm on Embarrassing Bodies!! 😹

One other thing..how can u ladies even stand to wear a bra when you had those rashes? I ditched mine n have never worn one since..I just wear a tight vest top under my rash vest to keep my bad boys in check!! Mind you I am much smaller in the booby dept!! 😉💜🌈😽😽Xx

My goodness Kat, what an horrendous experience you had!😩 So Fluxloxacillin was the culprit in your case! But I think you are right and that these drugs cause such a bad reaction because of the underlying condition (SLE in my case). I’m sure you’ll have had the SCLE at the time- it just wasn’t diagnosed. My lovely Dermy in Canada did a biopsy of the rash too and strongly suspected Lupus but couldn’t perform the ultimate tests to confirm SLE because we were nearing the time to return home by then. But because he had started the investigations, they had to carry on with them when I returned. 👍🏻 I was dreading the flight home knowing how itchy I was, but by some miracle it had calmed to a bearable level by then. I couldn’t sleep either and hubby used to read to me every night to help take my mind off it. I didn’t get the cornflakes as far as I can recall, but I think perhaps the honey helped. I know it has been used successfully for burns so I kept applying it, with hubby’s help, and sat with it on for an hour or so before going for a shower or bath. Messy, sticky stuff but who cares if it works. 😉 What I found most embarrassing on holiday was going about with a spotty face worrying people would think I had something contagious, so I found myself explaining to everybody I had a bad allergic reaction to a drug. In reality, I doubt if they even noticed or cared. 🤣

Re the bra - I’m too big and heavy to go without. My boobs would be around my knees before very long without the support of a bra. Not a pretty sight!😬 I heard a doctor on the radio when I was in my 30s say how easy it was to stretch the supporting ligaments of breasts which are not elastic and won’t go back once stretched, so I’ve always kept to wearing my bra, except for when sleeping. Lucky you not having that problem at least!😁

Thanks so much for sharing your experiences Kat. A horrible episode in your life but very helpful to members on the forum to hear about it as you say.

Take care Doll. 🤗😘💕xxxx

What an awful experience for you 😞 that was just like my dad, his skin peeled off like a snake and would also leave huge flakes of skin! sorry you suffered so badly too. It’s interesting you say it was the flucloxacillin that set it off as I’ve recently had amoxicillin which caused these weird blotchy hive things which strangely came up in the same places as I occasionally get weird blotches so I thought it was a coincidence, a few weeks ago I had co amoxiclav and within 12 hours the blotches and hives were back and within 24 hours my whole body was itching I stopped them and now I’m classed as allergic to penicillin which is strange as I’ve never been allergic to penicillin in my 61 years. Obviously nothing like yours, spotty or my Dad’s awful rashes but does make me wonder why I would suddenly become allergic, I also became allergic to trimethoprim about 20 years ago before I was diagnosed with UCTD. I wonder if it’s worth mentioning to my rheumy, he probably wouldn’t be interested, he seems to have a habit these days of dismissing everything !

Btw I don’t wear bras either unless I’m going out and then it’s only a cotton sloggi crop top thing, I have costochondritis and they’re just too uncomfortable😬

Hugs 🥰🌸💕💕💕

Oh my! Youre so brave, it looks absolutely painful indeed!. It almost looks to me like Stephen Johnsons syndrome, if you've heard of it? But wow, not nice at all for you, but glad you got your diagnosis and hopefully things haven't been that bad since. Xx

Hugs,

Lottie

Thank you so much Lottie and hugs are always welcome.🥰 It looked more painful than it actually was. The worst thing was the itchiness of it, which was unbearable and made me feel SO hot all of the time. It was impossible to sleep because of it. It just drove me mad! 😩 No, luckily I’ve never had a flare anywhere as bad as that was, but at the first sign my Rheumy gives me Prednisolone, Dermavate and increases the Hydroxychloroquine which seems to stop it in its tracks - thank goodness. How are you keeping Lottie? I hope you are as well as can be. 🙏🏻 Take care. Hugs to you too. 🤗🤗 xx

Hi Spotty-ewe, I got this kind of allergy attacks twice when I was around 17 years old but I never identified what it caused it. My uncle who was a GP prescribed me strong antihistamines and the allergy went away in around a week but came back later and the same I had to go back to the strong antihistamines. Then in September 2017 I had another allergy reaction to mosquito bites when I was abroad in Israel volunteering for 3 months. My whole body and face turn red with the allergy and it was so itchy that I had to go to an emergency. It was very expensive but a dermatologist saw me and he asked if I had a systemic disease as my bloods were all confusing and by then I didn’t know it was SLE so he diagnosed urticaria . Again he prescribed very strong antihistamines not available in the counter and some kind of antibiotics. Anyway I mentioned this to my rheumatologist this year when I finally got my SLE diagnose.

Spotty-ewe profile image
Spotty-ewe in reply to EG74

Hi EG74, Sorry for the slow reply but I’ve had a day of long medical appointments so feeling exhausted now.I’m so sorry to hear about your allergy attacks and from such an early age. We Lupies have to endure a lot and suffer for many years before final diagnosis don’t we? My symptoms started in my early teen years with inexplicable rashes, nausea, headaches aches and pains, and were often put down to ‘nerves’.🙄 Thanks for sharing your experiences with us here as it is always comforting to know we are not alone and that others have had very similar experiences. I hope your Rheumy has your condition under control now. 🙏🏻

EG74 profile image
EG74 in reply to Spotty-ewe

Thank you Spotty-ewe. I just read your profile. I also had neumonía when I was 4 years old. I’m originally from Bolivia and I live in Edinburgh for 20 years now. Where in Scotland do you live, I read in one of your replies you are in Scotland

Spotty-ewe profile image
Spotty-ewe in reply to EG74

Hi EG, I’m sure the pneumonia in both lungs together with the measles virus in my case had something to do with my immune system going wrong. However my Mum was diabetic so there might also have been a pre-disposition for it. My nearest town is Dumfries. Are you in Edinburgh itself? It is rare I ever get to Edinburgh - last time was 2 - 3 years ago. Take care of yourself. 🤗

Dear Spotty, the rash looks horrendous and it must have been terribly sore. What a nightmare to deal with especially whilst abroad on holiday. A good post to share as other peeps maybe suffering something similar and this is a good steer re: rash and treatment. I have been trying to DM you but the app on my phone just freezes - so reaching out to day “hi” and hope you are ok? I’ll try and login via the laptop and see if that makes a difference. Lots of love 😘🤗😘

Hi Hw, so good to hear from you. Glad you found the post interesting. I’ve been thinking about you and was just hoping you were busy ‘horsing around’ rather than anything wrong. So I’m pleased to hear all is well, except for the phone misbehaving of course.🙄 My iPad plays up too and I’ve found is incompatible with Android devices so when I try to highlight the long thread below my e-mail it does highlight it but DELETES my e-mail.😩 I keep forgetting it does that so have lost a few long e-mails written to friends. 😡 I’m still working with my therapist and today have been diagnosed with tendinitis in my left biceps muscle so have been prescribed the NSAI Etoricoxib for 2 weeks. I’ve had the problem, with excruciating pain on certain movements, since mid April, so hope this will at last give me relief. 🤞 Other than that I’m not bad thanks. How are you keeping now? I hope all is well with your Mum too, or at least as well as can be.🙏🏻 I hope you and all the family (human and fur) are surviving the heat I hear you are getting down there too. 🤞 Looking forward to hearing your news when you get a chance. Good luck with the laptop. Take care. 🤗😘🙏Xxx

🙏🙏😘😘🤗🤗xx

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Spotty-ewe in reply to stiff19

🙋‍♀️👋🤗🤗😘😘💐🐞🦋🐝🐝🐝xxx

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