Any ideas with worsening weird rash please? - LUPUS UK

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Any ideas with worsening weird rash please?

Hello, anybody had anything similar to this photo or got any ideas please?! I’ve had it 3 times over the past few months, this time is much worse than before as it’s all over my lower legs and some on forearms too.

I have been having repeated kidneys problems and infections at the same time. The rash seems to coincide with bleeding nose and blood in urine but that might be coincidence...

Anyone have any ideas please? GPs wanted me in hospital again last week for kidneys so loathe to show it to them as they sometimes worry unnecessarily about lupus symptoms. Their answer is usually to tell me how ‘complicated’ I am and to ring rheumy / nephrologist or go to hospital - which would be embarrassing if it’s flea bites from the dog 😱😂 It’s also completely painless so not too bothered if it’s not a sign of bleeding/ inflammation elsewhere, at least I get the swimming pool to myself! 🙄😂

Thanks! X

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Yes...they tell me it’s due to my small vessel vasculitis...tends to flare when i’m flaring and when my infections are active eg i had a bad patch on my arm 10 days ago. I always take photos, so am glad you are too!

If i had these rashes flaring as widely as you are, i’d get straight in touch with my univ hosp lupus & vasculitis service

As you know, alongside my early onset hypogammaglobulinaemia (antibody deficiency disease) immunology has diagnosed me with early onset infectious urinary tract disease (and complex persistence pattern pyelonephritis is part of my case), so the signs & symptoms you’re describing are v like mine...inc the nose bleeds

So sorry you’re having an ultra rough time..Take Care

❤️🍀❤️🍀 Coco

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Thanks coco, do you have a photo of yours? How did they dx it? Some drs have seen mine and said it’s vasculitis but then others have said it’s a clotting/ bleeding issue. Do you have abnormal APTTs too? Mine is a shortened clotting time which I think is opposite to the typical lupus abnormality.

Yes I think mine seems to come now when I’m infected or flaring (or both at the same time 🙄)

Not too tough a time thanks, just trying to get the repeated infections controlled and put the final puzzle pieces in - but have come to the conclusion that some of us have disease puzzles that increase in number of pieces sometimes just to add to the challenge. Hard for a control freak who likes to know what everything is - but maybe good character improvement lesson in managing unpredictability (and enjoying horrifying the people with looking like Freddy kreugar when they normally say how well I look when I’m feeling awful with the lupus - as so many of us get!!)

Xx

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😍 You’ve made me chuckle: THANKS...GRRRREAT to know your sense of humour is as black as mine...we’ve gotta get ALL the fun we can out of this diagnostic & treatment process JOYRIDE 🤣🤣🤣🤣...eg back in 1998 when the 14 yr old malignant tumour in my finger was FINALLY recognised NOT to be osteoarthritis...my sister sent me an orange plastic finger tip + talon to stick on the stump after the amputation...i wore it to my followup appt with the surgeon: he LAUGHED (he is one of the Good Guy True Detectives)

Yep: got some photos...not as good as yours, though...cause my worst rashes like these was back before i FINALLY began the diagnostic & treatment process in 2010...when the NHS was telling my my lifetime of spooky weird manifestations & emergencies was “just normal”...so i wasn’t taking photos

🤩 Your knowledge is greater than mine re APTTs...i googled it & found this...so, do you mean:

“activated partial thromboplastin time (APTT) as- say is generally used to assess coagulation disorders in patients with abnormal bleeding due to deficiencies with- in the intrinsic coagulation cascade”

If you do, i WISH i knew if APTT is part of my diagnostic jigsaw puzzle...and i figure that at some point i’ll be investigated for this. But because have mainly stayed relatively more stable for several years now on rheumatology + immunology’s my therapeutic combined treatment plan (i even got over breakthrough pneumonia fairly easily early last summer)....the NHS doesn’t seem interested in pinning down more of the finer diagnostic details about my characteristic manifestations

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Oh you’ve made me (and my boys) laugh too with your fake talon. They did it with awful fake teeth to the dentist and he gasped and stepped back in horror - he said he thought they were real. He had no sense of humour at all though and sure he punished me later for laughing so much at his reaction (he put a crown on backwards!! Seriously 🙄)

I expect they’ll have tested your APTT as it’s one of the standard tests. Most people with lupus with abnormalities with APS have a prolonged time so no one’s been able to explain mine which always goes low in a flare. I researched it and it said it can just be a sign of inflammation or easily clotting blood.

Yes I think my rheumy has come to the same conclusion as yours, that the finer diagnostic details aren’t that important - i showed him photos of the (less severe) rash before and he said he’d be worried if I was a normal undiagnosed person but I’m so aggressively treated that I suppose extra symptoms actually don’t make a difference. I suppose it’s the same as you, if your treatment’s working then they don’t look further. I guess people like you and me like to know what is though!? Xx

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👍👍👍👍YAAAAAY BOYS 🤣🤣🤣🤣

VVV INTERESTING: THANKS! I have all my test results since i started with rheumatology at my univ hosp: i don’t remember APTT on them...will check them...and am at immunology clinic again on monday: will ask

ALSO am grateful for this insight re your rheumy’s attitude...what do i really know, but my feeling is that the current severity & extent of your rashes may mean your rheumy might want to 🤔 think again...

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😂 yes I must admit I encourage such behaviour as I find it funny too. When I was in hospital someone had bought me sweets in the shape of little fish and one son was desperate to put them in my urine sample. I stopped him because rheumys reaction would probably have been similar to the dentists - extremely unamused and because sometimes I can’t stop laughing when the disease is active in my brain I knew I would have been crying with laughter and straight on the steroid IV for ‘inappropriate laughter’ when laughter would have been completely appropriate (in my opinion but then I’ve always found that sort of thing funny - it’s not just a sign of sometimes dodgy brain, it’s just my bad character! 🙄😂)

Definitely worth asking about your APTTs. So good you get all your results, I’m still asking every appointment to get copies of mine with no success. A very grumpy secretary reluctantly sends me copies but each time says this is the last time 🙄

Thanks, I think I probably should send him and nephrologist the photos and tell them about recent kidney infection but I’m already his most time consuming patient and I don’t want to be even more annoying and them not respond when it’s a proper emergency as he’s always been brilliant at a quick response when I really need him. I think he doesn’t think rashes are important. The nephrologist did email last week to say she and rheumy were discussing and more information to follow - but not heard any more.

Good luck with immunology. Is this to decide IVIG? When I was at national neurology hospital a few weeks ago there were rooms full of people having IVIG for various reasons (I was bored and went to chat to them!) and most said it was great so 🤞🤞 for you.

Xx

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🤣🤣🤣🤣 ❤️ that 🐡 Story 👏👏👏👏

👍....maybe think again if stuff worsens, eg these rashes increase etc

It’s my regular 3-6month Imm review...am HOPING 🤞IgG replacement therapy won’t come up cause they are continuing to postpone it cause of worries i’ll hyper-react to IgG....and i’ve got enough hassle right now with neurosurgery of spine coming up later this month and that’s due to be a long tough recovery.

Yes, my PID UK & UKPIPS forums are full of IgG enthusiasts...but many of them are constantly fighting terrible infections & feeling awful despite IVIG/subcutIgG...so...and OMG NHS supplies are in BAD trouble too...the authorities have just released extensive official guidances re which NHS patients qualify for IgG replacement therapy: sobering reading 🙄....almost happy i’m not hooked on IgG already....there are loads of anxious patients hooked on it out there right now 🤦🏼‍♀️

XOXOXO

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PS how did you get the pyelonephritis under control please? GPs have said mine is now resistant to all the antibiotics except IV gentamicin but have had 2 separate 5-7 days courses of this and it’s given me hearing loss and crazy tinnitus so I really don’t want more as the damage is based on cumulative dose and the next stage can be permanent balance problems - like constant labyrinthitis and that would be awful! 😬

Xx

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First there was over 40 years of sudden severe onset ULTRA RAPIDLY ESCALATING/galloping urinary tract infections with THE SPOOKIEST looking UCK in my samples were treated casually called “just normal” by GPs & A&Es ...and treated with “normal” courses of trimethoprim, & then when i became resistant to that amoxycillin, & then when i became resistant to that high dose cefalexin....but all those couldn’t stop my version of this becoming more severe & more recurring + persistence pattern. I spent the last decade of managing this farce with my own urinalysis kit + SOS courses of high dose long administration cefalexin at home...AND STILL my GPs NEVER told me to collect a mid flow sample on rising inna red lidded lab pot for testing & entering in my official records.

Finally several years after my infant onset lupus diagnosis was recovered in 2010, and immunology had diagnosed my Antibody Deficiency Disease, this WONDERFUL forum had helped me learn i needed to INSIST on referral to urology. At our first appt the chief surgeon put his head in his hands and moaned on hearing my history of multisystem infections + v early onset simultaneous autoimmunity & immunodeficiency. He was especially worried about cancer re my history of malignancy + those decades of all that stuff in my urine samples

Anyway, that wonderful urology dept started Investigations & tried daily nitrofurantoin (ineffective) ...but what REALLY damped my version of this right now was LOADS of IV gentamycin during rigid cystocopy under general anaesthetic AND meanwhile immunology putting me on daily coamoxiclav (2x625mg tabs per day) forever...but we all remain vigilant! I co7nt myself v lucky so far...and i’m VVVVV MUCH feeling for you

Hope something in there helps...aplogies for going on at such length...PLEASE Keep Us Posted

❤️🍀✊🤞✌️💐💐💐💐💐💐💐

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PS my early onset persistent tinnitus & permanent vertigo/balance dysautonomia stuff began to get A LOT worse forever in 1985...another long story. All that is responding pos to rhrumatology’s daily pred + myco, but gets worse whenever i have infection, lupus etc flaring

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Thank you - that’s so helpful although can’t believe your GPs left you with that for years?! Well I can believe it actually - at least you have a great urology department now. My current team of drs are very good but urologist wants similar to you of long term antibiotics and rheumy and nephrologist said no as I think they think it’s more the lupus - although I’m not sure. They are meeting to discuss to will see!! At least they are working together and trying very much to help so can’t ask for more 🙂 That combined with all the help on here by people who have had similar and all the general lupus knowledge here is very helpful xx

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WELL Done: i ❤️ the way you’re looking at this

My version of this is probably more down to the infancy onset of my autoimmunity + what my history indicates was the childhood onset of my Antibody Deficiency Disease ...i’m 65 now with progressive multisystem debilitatiin inadaquately medicated for decades...equally, it was decades before the medical fraternity figured my urinary tract stuff out...they had 🤷🏼‍♀️ ME feeling responsible for causing/managing/firefighting these infections for Decades...these infections started in my v early 20s in the 1970s...now i too can’t believe they left me to suffer through all that...

but, you know melba: 🤦🏼‍♀️i partly blame myself for being naive enough to believe them when they told me it was “just normal”....i “just believed” them & decided it was my job to get them to move SUPER fast to give me antibiotics RIGHT AWAY & meanwhile it was my job to tough out the pain, UGLY symptoms & NIGHTMARE urgency etc....& i felt it was my job to research & follow ALL the lifestyle/self help advices so i’d get these “just normal” infections as infrequently as poss. Well, now i try not to judge my naivety harshly....i tell myself my kidneys probably would be more damaged now had i not figured out how to manage this complex persistence pattern infections as well as i did...

AND i tell myself my generation of patients is amongst the first to actually have the underlying causes more convincingly diagnosed and effectively managed 🤷🏼‍♀️....NOW i WANT your team to figure your version of thus out PRONTO‼️

Please let us know how these deliberations go ❤️🍀

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It is crazy when we look back and just take it as normal, keep adjusting until cannot cope or adjust any more. I think we just hope sometime will change or it might all go away. Or we will get diagnosis and help. x

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So True...and i just wanted to believe the authorities: i WANTED all my weird stuff to be something that was “just normal”, rather than something spooky & serious....XOXO

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In a way i think the wanting to believe is our brains way of coping because deep down we know when we are facing sometime more serious. Housebound and barely functioning cannot be right can it? We were there. xx

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SPOT ON: that’s exactly how i felt XOXO

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Very good points - learning to believe our bodies (and the drs learning to believe our interpretation of our bodies) is so important but so hard when so much is going on and it changes all the time where it attacks! X

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PS i think you know about petechia, purpura & ecchymosis ‘rashes’ but here’s a link to a good source of introductory info in case others reading this are curious:

en.m.wikipedia.org/wiki/Pet...

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In my case, systemic treatments are helping: ie Rheumatology’s standard therapeutic daily combined therapy lupus treatment plan meds have reduced the severity of my version of this considerably.

As i understand it, the main cause underlying my version of this is 5 decades of my infant onset systemic lupus going unmedicated allowing secondary small vessel vasculitis to progress. But after my lupus was rediagnosed in 2010, and we gradually put together my current standard lupus meds, my version of this settled down.

My standard very effective systemically therapeutic daily lupus meds are: 300mg hydroxy (basic lupus treatment- an antimalarial) + 10mg prednisolone (immunosuppressant steroid) + 1000mg mycophenolate (immunosuppressant anti transplant rejection drug).

I only see dermatology about skin rashes etc. As far as i know, vasculitis of all sorts is usually treated by rheumatologists.

My university hospital rheumatology dept includes some of the UK’s top lupus & vasculitis consultants. I feel very lucky to be in care with this dept

Hope something in there helps ❤️🍀

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Sound positive. Makes sense your lead is nephrologist vasculitis specialist. Expertise does overlap within specialities

Yes, we lupus patients usually need multidiscipline care. Eg my lead NHS clinicians are in rheumatology (for my 2 primaries: SLE & Hypermobile Ehlers Danlos) & immunology (for my 3rd primary: Primary Immunodeficiency Disease), and Gastroenterology is also key to my care because i’m in Intestinal Failure on Exclusive Enteral Nutrition long term caused by my 3 early onset primaries. Then there are at least 5 other NHS clinics i attend regularly long term: gyn oncology, Cornea clinic, ENT etc etc all due to multisystem issues related to immune dysfunction & connective tissue disorders. Considering the very early onset of my primaries & my age (65) i get the impression my need for all this multidiscipline care is fairly representative of patients with our sorts of issues

Take care & good luck 🤞🍀❤️

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Sounds like a real rollercoaster ride Melba1, hope they get the infection under control very soon!

Allicin is widely used.......in countries where antibiotics are too expensive

My mum had the same rash on her shins, usually accompanied by bruising...it seemed to have been vasculitis (she never had a systemic diagnosis, just one symptom at a time)....everything crossed they get to the bottom of it all very soon xxx

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Thanks eekt, that’s useful to know. The problem (one that adds to the complicated patient label 🙄) is that my GPs decided I was allergic to penicillin and won’t let me try again. So that rules out so many effective antibiotics.

Now we know I get palpitations and autonomic dysfunction with the lupus and many medications I’m fairly sure that was what we thought was an allergic reaction - but they’ve said they can only allergy test once I’m off steroids and that’s likely to be never! And they won’t take the risk of me just trying it. Although even after IV gentamicin the infection came back quickly twice so not sure what’s going on - no immunity I suppose 😬

Xx

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WISH, WISH I could be of help but all I can do is keep everything crossed they get to the bottom of it SOON

I feel very silly saying this given the deeply complicated situation you're in...allicin is a compound in garlic (has to be raw, the smell on cutting is allicin)....it boosts the immune system, the reason why some folks have to avoid it xxx

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Ah so garlic bread won’t count?! 😂

Oh no, now you’re joining with the drs in calling me complicated 🤣 although at least it’s not ‘complex’. I’m always sure that’s meant offensively when they say that about us?!

Xx

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The GP Curriculum has a 'Complex' category that includes mental health problems and substance abuse, it's a write-off name, so 'complicated' is meant in the nicest possible way....intricate! xxx

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Hmm, oh dear, I’m sure I’ve seen complex in my notes! But I think it said complex disease rather than complex patient but can’t be sure! I can tell by the sighs and/ or looks of fear and/ or the ‘we’re running out of options with you’ that my GPs don’t think ‘complicated’ in the nicest possible way! But they do care and are trying despite how expensive and annoying I am 😬😂 I guess there are a lot of with lupus in the complicated category... xx

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First rash does look like my vasculitis diagnosis so yes would show it to doctor. I also had Iv gentamicin and got uti back afterwards as did not follow up with on going penicillin, my own fault at the time. A long history similiar to Coco who has detailed it all so well. I too have the low globulins. I really hope you get things sorted . x

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Just a thought about the potential reaction to penicillin Melba1...

I can understand your GP not wanting to prescribe penicillin for use at home If he thinks you may be allergic but, as you say, not clear cut because of so many other things going on.

However, as your antibiotic options look to be quite limited now, if you go into hospital again (though hope you don't have to), might be worth asking them to give penicillin a trail under controlled medical conditions. At least that way you'd know for sure and may open up more antibiotic options again...though of course wouldn't suggest this for someone who'd had an obvious or severe reaction.

Hope things are a little...well, a lot...better today.

Thank you for the entertainment...been howling with laughter at the strategic placing of urine specimens...and at one of your boys wanting to place a little sweetie fish in your urine sample. I would have let him! 🤣🤣🤣🤣🤣

Take care xx

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Thanks foggyme - yes good plan for antibiotics. I think GPs would feel safer that way and they all talk about when I’m next in hospital rather than if 🙄 so will try that. It definitely wasn’t a true allergic reaction anyway, more an intolerance so think it will be ok!

Ha ha yes I keep laughing at the mis- typing of where to put the urine samples - even more so at lisalou’s comment that she’d do the same! 🤣🤣

I’ll introduce you to my rheumy and see if you’d be brave enough for the fish joke then! Worth it for the very unamused look 😂xx

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My skin does this but not as bad as this.

They thought vasculitis then said I do it to myself with scratching 😳

I couldn’t even be bothered to argue with them on this as I’m too tired with all these idiots making rubbish excuses! X

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Thanks lisalou, actually I thought scratching at first with mine because when my kidneys are bad I get really itchy all over. Then I realised that even if I was scratching in my sleep, normal people’s skin wouldn’t create that level of under the skin bleeding so even I scratch myself really hard when I’m not in a flare my skin doesn’t go like that and I’m sure yours wouldn’t either so I’m guessing maybe we both have inflamed/ weak small blood vessels which just bleed themselves??

Not sure but they do need to look deeper with you because that might be an important clue in your diagnosis. Who said it was scratching - Dermy it rheumy?

X

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Well I did say if it was scratching, Is this a normal skins response??? This was dermatologist!!!! When I feel poorly I can just touch my skin and it causes blood marks! For this reason if I do itch which is normal During poorly moments I get in a shower rather than scratch! And then I get a prominent rash once in contact with water.

My skin to me is constantly under attack! X

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Good response to the dermatologist! What did the say to that?! That’s the same with me when I’m having this type of flare, my skin bruises/ bleeds underneath with the slightest touch.

Does yours go through better phases? Although I think you’ve been stuck in a flare without much relief for quite a while? 🙁

I really hope they get to the bottom of it soon for you. Did you get another appointment soon? You feel better on steroids too don’t you? I wondered if all the steroids I’d had was causing the easy bruising/ bleeding but probably not like this.

Xx

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I got zero response! I find I always get a zero response when I ask a valid important question.

I do have periods where my skin is settled, but as soon as my hormones peak my symptoms become more intense. I’ve always said my hormones are feeding this.

Steroids to me are the gates to my old life, everything disappears. I still get the occasional nose sores and fatigue but nothing like I am without them.

I’m not so sure steroids are the blame , my skin was doing this for a while beforehand. It’s the bodies way of letting us know something isn’t right, but I’m no closer to finding out exactly what it is!!!!!

X

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Oh that’s not very helpful of the dermatologist at all 😬 Maybe that’s what happens when it’s a good question but they don’t know the answer??

I don’t think you’ve had enough steroids for it to be causing that bleeding for you though and like you say yours happened before steroids. It’s more likely with me because I’ve had 2 years of high use of steroids including several high dose IVs and been on 10-40mg for ages so some things like my muscle weakness and easy bruising (and huge face! 😂) are sometimes blamed on steroids.

Yes steroids are magic aren’t they? I’m desperate to get off them because of long term side effects but then having a reasonable quality of life and being able to do things with the kids is so important at our stage in life so I’m at the point of just accepting them.

Did Dermy have ANY useful advice/ diagnosis for you?!

Xx

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Do you have blood in urine too when you get these rashes? I’m thinking there’s possibly a link and my urologist saw my rash and thought so too x

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It might be worth me getting some urine test sticks to check this as I always have +1 protein and +1 blood when urine has been checked at hospital. They have never seen it as a problem but may actually be a good idea. Like I say usually I don’t have the rash on hospital days. Although I have the following symptoms documented as visuals, dry eye, nose sores, nose crusting, rash on chest, extensive livedo

X

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Yours does sound vasculitis like. Blood and protein every time- I’m sure that is again part of the diagnostic clues for you! I thought you were at Guys now, are they not investigating this?

I got some urine dipsticks from Amazon, very useful to do yourself then I take photos of the dipstick with the date so I can show rheumy/ nephrologist when there was blood (often lots most of the time) or protein (only occasionally) as they all like photographic evidence!!

Although my husband and boys call me a weirdo for having urine containers around the bathroom - sometimes if it’s a really weird looking sample I save it to show the consultants but I’m not sure they appreciate a sample tube filled with weird wee being presented to them - my rheumy was, as always, very polite and said he didn’t find it gross but the urologist said he didn’t want my old urine samples as it would confuse the labs and to put it straight in his bum! X

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His bin not his bum!!! 😱😂😂 xx

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🤣🤣🤣🤣🤣🤣😂😂😂😂😂😂😂🤣🤣🤣🤣😂🤣😂

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I literally just spat across the room

With laughter 🤣🤣🤣

I’m under guys, yes. To be honest I’m

So complex by the sounds of things they don’t know where to start.

I’m 100% going to track my own wee, take photos

And they can stick them in their bum too 🤣🤣🤣x

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😂😂 might be just what’s needed 🤣

My husband is really irritated with me, I can’t stop laughing at the thought of my very over confident urologist with the urine sample erm...

I’d just stopped and now you’ve started me off again 😂

Xx

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🤣🤣😂😂. My daughter was asking what was so funny 🤐🤣🤣🤣 I’m

So happy you didn’t delete that. Was so worth the laughter xx

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I’m still laughing this morning 😂 x

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I was trying to do my meditation last night and I just couldn’t focus because I kept laughing. Such a priceless moment 😂xx

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OMG!!!!! I started with this rash when I became chronically ill. I had an ear infection and came up with this rash a few days later all over my body. Its come up three more times since and appeared on my hands just before my kidneys started deteriorating. Doctors haven’t explained it at all. I also get blood clots in my left nostril and nose bleeds which there hasn’t been an explanation for and nose bleeds are not normal for me.

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Thanks so much for the response. Did you get blood in urine at same time as this rash? Have you had a kidney biopsy?

It’s weird, mine coincides with nose bleeds and ulcers up nose too and definitely seems to happen when kidneys are affected as last time my GFR went to below 60 and I had blood and protein in urine although sometimes it’s because they’re infected.

Did you show your drs and them still not give an explanation? I’m not sure whether to show mine or not

Are your kidneys ok now? What did they do for them?

X

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I get the nose ulcers and kidneys GFR in 50 mark with mine too.x

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Thanks Louise-a, what did they do for the kidneys? My nephrologist said she’ll biopsy next time if there’s still blood and protein but I’ve had so many kidney infections recently none of us are sure what’s infection what’s the lupus 🙄 x

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Have they thought maybe its an infection and the Lupus. Once im flaring all my issues kick off. I get the uti, chest infection etc treated but it has been noticed via bloods that my kidney reading go up again with dmard and steroids so it must be Ai too. x

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Yes I think they’re thinking it’s all connected and is both lupus and infection. Nephrologist and rheumy said they would discuss and come up with a plan. I keep trying to experiment by seeing if it’s infection or lupus by only adding in extra steroids or antibiotics but then always need both so hard to tell! X

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I’ve been in and out of hospital in the last half of 2018. My kidneys acted up in November just after I got bits of the rash again. I’ve had a kidney biopsy and blood in my urine and had maximum protein leaking from my kidneys. They were quite bad at first I wasn’t responding to treatment at all. But I kept being patient and asking the docs to give the steroids a chance as I really didn’t want chemo drugs or to go on dialysis. I’m only 22, it was a very daunting experience. I didn’t have any sign of protein at all. My albumin was the lowest they’d ever seen, my kidneys just didn’t want to work. I had 24kg of water retention (oedema) on me which has caused severe stretch marks and was demanding on my small frame and organs. For several weeks my kidneys weren’t improving then at one point they stopped getting worse. Still not functioning then I gave it a few more days and they started improving. I had no salt, was very strict with what foods I ate (followed the blood type diet) and you know for some reason and by a miracle o made a recovery.

My kidneys the past couple of days have been hurting and I’ve had frothy urine but all this time my kidney functions have been good. My PCR is still a little high but it is decreasing rather than getting worse.

I’m on a lot of medication now and three immunosuppressants which I will be taking for the foreseeable future.

The doctors haven’t given an explanation for the nosebleeds or rash.

I suggest to keep a record of everything and take pictures because there might be someone who would know what’s going on, we have to remember doctors don’t know EVERYTHING.

X

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Oh poor you, so young too 🙁 but glad the drugs are working. Yes a few people now are saying the rash might be connected so worth keeping an eye. Hope yours doesn’t start again x

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I would say be glad that they at least recognise your Lupus as to blame and are trying hard to get it controlled.

I just noticed an identical rash to yours on both upper arms the other day. I’m more like Lisalou in that my doctors forever find reasons not to blame anything systemic for +1-3 blood in pee, stage 3a kidney disease, weird petechiae rashes blamed on “something bacterial”, raised CRP of 24 blamed on fatty liver - which btw the gastro who ordered it hasn’t even mentioned in his ultrasound report!

The only thing my doctors conceded as part of my Sjögren’s is neuropathy - which they think is probably dormant now - damage done they call the white matter etc. How they can be sure of this I haven’t the foggiest as small nerve and blood vessels are absolutely everywhere around our bodies🤷🏼‍♀️

My little spots on shins, feet, arms and face (and apparently my stomach lining too?!) look like yours but have receded again now I’m feeling properly unwell with a cold, pre-flu, sinus infection or Sjögren’s flare. They seem to be a vascular precursor to unwellness of any kind - especially upper UTIs or sinus-ish type things along with mouth and (I think) genital ulcers.

Ugh having spent a week on IV Gentamicin the first time this happened I really feel for you. No one is remotely interested in treating any of my issues until they become critical now and part of me is very glad for this as I can simply pretend it’s all just not happening or coincidence as they do!! X

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Thanks twitchy and yes I am very grateful for the great care and amount of effort they’re putting into me.

I am very surprised that they’re not looking more in-depth into your blood in wee etc although my

urologist did say that 40% of blood in urine is unexplained.

Yes I’m coming to the conclusion that the rashes seem to be an external sign of general inflammation whether that’s infection or lupus inflammation. Which is what urologist, endocrinologist and neurologist told me too when I was in hospital but then all said they had little idea about lupus but wasn’t it fascinating?? 🙄😂

Hope you get more answers at your next appointment although I think sometimes the answers we need just haven’t been medically discovered yet...

xx

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Honest Mel - I’m getting increasingly certain that I will never get answers for anything! For instance I have tiny burst blood vessels (petechiae) absolutely everywhere including the lining of my stomach, finger tips and eyelids, chin, nose, eyebrow and throughout inside of all my orifices. I’ve always assumed this was normal because I’m fair skinned but with intermittent colossal nose bleeds and varying amounts of blood in my pee I’m beginning to guess it’s CTD related.

The derm prof seemed to agree but owing to relatively normal immunology (apart from still just +ANA and raised immunoglobulins) no one ever seems remotely interested!

I’m glad they are interested and even amazed by yours though. It’s helpful knowing how it should be here -even if this isn’t ever going to be unless I’m literally carted out of my home on a stretcher unconscious! Xx

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I feel like I’m being left to see what happens 😬.

I’m sure they are waiting for my legs to completely stop working before they look deeper.

Personally I’ve become quite exhausted with all this and I’m going to take all me tablets and prey they work. Should I collapse in a heap, well I guess I will deal with that then 😉x

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Or they will?! X

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Well they’re interested and try but no answers either!

My bloods are much more abnormal these days but always things that are unusual like raised cancer markers and dodgy clotting etc rather than dsDNA or ESR so still confusing for the drs.

Are you planning a Dr Price trip? She seems the one you might get a proper plan from although I liked your Dermys response x

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Thanks Mel. It’s strange about your bloods. Is it better to be taken seriously for weird bloods or would it be better if they just focused on our weird symptoms more?

I think bloods are so important to doctors but so hopelessly confusing and often almost irrelevant or misleading for us?

For eg I’ve had raised RBCs for years and yet no one ever shows any interest in this. But when I was hospitalised in 2015 they were all totally baffled and intrigued by my CRP of 160 and ESR of around 100 and yet couldn’t find much to pin these to much at all apart from my evident agony from very active neuropathy.

Nowadays no one looks at these bloods and anything raised now is blamed on the sicca/ thick blood and concentration in my blood of immunoglobulins of my Sjögren’s. Yet I’ve asked in international Sjögren’s communities and BSSA helpline and most don’t have these type of markers whether their Sjögren’s is active or not.

No matter what health misery I describe to my doctors, these blood results are viewed as an irrelevance because of being a given and therefore my normal. So what exactly is normal about having thick, concentrated blood and being dry in every pore and cell then? And how would these norms not impact on a person’s organs including our kidneys, liver, bowels, pancreas and skin? And if these elevated markers don’t represent active systemic Sjögren’s then what does?

Dr Price was fine but a little baffled by my blood work she admitted. She explained that no one would do anything for me unless my anti Ro became positive. Seems she was right.

However I think if I was her NHS patient she would pay much more heed to my symptoms than my present team do and she did say that she thought I had more going on than had yet revealed itself in my immunology so maybe they are just waiting until it kills me or shouts at them - or both?

I don’t think I could face trekking all the way to Swindon to be told similar stuff as I’m being told now. The vascular doctor is seeing me every 3 months “while we try to puzzle things out” so I’m not really being ignored as such. My rheum responds briskly but quickly to my occasional emails.

But I’m just now sure what they are waiting for or how I’m supposed to function while we wait? I guess this applies to so many of us here - the horrid, mind and body challenging waiting game. X

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The skin is our biggest organ. For me it always flares when inflammation getting worse inside. x

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OMG THIS IS SO TRUE...this is why i go GRRRRRR when patients with lupus skin involvement are told their lupus isn’t organ-threatening! XOXO

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Yes indeed. Both my dermy and vasculitis doctor confirm how revealing and important the skin is in Ai stuff. I read that the skin infallamtion in certainconditions/rashes is like having to deal with a severe burns situation, in terms of losing fluids, dhydration etc. x

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Fits with my experience! XOXO

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OH yes GRRRRRRR indeed .xxx

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Yes good point. I think it’s confused me because I’d never , in many years of lupus, had skin involvement other than a mild malar rash, but everything’s changed in last couple of years so need to keep up!! With the help of you all 🙂 Thanks! X

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Yes I am so grateful for everyone' help here, amazing. I used to dismiss my skin more so when younger but now realise huge for clues. In my younger days when rheumy used to ask about rashes I was a bit on the slow side. Things i called multiple spots, widespread redness etc where actually very relavant and I did not mention. Skin now being very helpful giving more clues. x

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Good morning from the USA. I had a rash but it was bigger in appearance on

my stomach and back. I was seen at Mt Sinai in New York by several doctors

and it was determined to be a lupus related rash. I have started on Meth-

otrexate 15mg once a week and have seen dramatic improvement. Not

only did the rash resolve but I feel an overall wellness. The day I take the

Methotrexate I feel just headachy and tired but only for the day. I also have

Sjogrens Syndrome which have similar symptoms as Lupus. Thankfully I

have no internal involvement due to the Lupus. I have suffered since early

2000 with very dry eye. Recently seen at Wills Eye in Philadelphia and was

started on Autologous Serum Tears and it has truly been amazing at the

improvement. I have not used an over the counter eye drops since I started

the Autologous Serum Tears. I hope this helps anyone with these issues.

Have a blessed day.

Maureen

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Hello, glad to read Mtx helping. It is great when find a dmard we get along with but yes all have those side effects . x

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Thanks, pleased you’ve found a med that works well. I’ve been on various and now methotrexate and rituximab for the last year and found the combination worked well - although reduced immunity which is to be expected, always balancing the pros and cons!

X

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I had a small dose of that on my legs and ankles pre Lupus diagnosis. I was supposed to go for a skin test, referred by my gp but nothing came of it, it was cancelled, gp didn't know why. It all cleared up eventually but I can't remember whether it was after the diagnosis of Lupus and with treatment or not. I was having nose bleeds as well

It doesn't look like bites, see your gp

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Hi, so sorry for you! I have had the exact same rash on my forearms for about 3 weeks. I mentioned it to my rheumatologist last week & he totally dismissed it :( i am so very sorry that you have so much going on...💕

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