Confused and scared and looking for insights :-)

[Pinyet]

Hi all

I'm a little confused about what's happening in my body and am in the middle of investigations. To cut my story as short as possible:

- Last May and again in June I had a very subtle rash on my cheeks that lasted a day each time. It was accompanied with itching over my face, up the inside of my nose...the itching lasted basically all summer and stopped abruptly in September.

- In September I went to the docs about unexplained stomach issues - discomfort, bloating and constipation (very unusual for me). She randomly did a urine test (thinking: UTI) and it showed blood in urine but no signs of infection. This triggered a load of tests and kidney scans. Kidney function was lower than expected but NO protein in urine, etc.

- In November I saw a kidney consultant who said my kidney function had been lower than would be expected but was now picking up. All my bloods were normal except my DS-DNA which was 16 (normal range goes up to 15) so 'clinically insignificant' but due to face rash earlier in year and kidney stuff he wanted to re-do the test in 3 months.

- just before Christmas I started having burning, dry eyes and knee pain on one side that I can't put down to any injury...

- in the meantime over Christmas, my Complement blood test came back normal, as did another CRP blood test.

- Saw the kidney consultant again last week - kidney function has improved even more, back to normal (thank goodness) But had the other ANA blood test and again the ds-DNA was above normal - this time it's 20. Which is still relatively low, I understand, but has nevertheless increased and now he has cause to refer me to a rheumatologist. I'm awaiting this appointment. The kidney consultant did say he'd be surprised if the kidney issue was related to this ds-DNA rise...he basically said all my bloods should have been a lot worse if I had SLE and it was attacking my kidneys. (but it feels like too much of a coincidence - the whole reason I'm being investigated for autoimmune stuff is due to that kidney inflammation in the first place.

However, I don't seem to have the usual sweep of lupus symptoms. I'm not sure the rash was really a malar rash...and it was so brief - haven't had it since. The itching all over my face and scalp was strange - but at the time I put it down to seasonal allergies (which I've never had...but still, I'd moved earlier that year) Beyond the knee pain which isn't awful (and as of yesterday a sore elbow) I don't have joint pain anywhere else. I'm not particularly fatigued (I have a 2 year who never sleeps so I'm tired...but not exhausted).

Anyone else with anything similar? I'm naturally terrified as I know that ds-DNA tend to be SLE and I feel like I'm just hanging out...waiting for a whole tsunami of symptoms to hit me...but looking at my other bloods and symptoms...it seems strange.

Thanks in advance for taking the time to read!

[cathie]

did you change your skin care with the season? Could you be allergic to something? Just asking because I developed allergy to perfume in creams when exposed to sunlight.

[Pinyet in reply to cathie]

Hiya, Cathie - nope, nothing I can think of. I am thinking the itching was related to the sunlight during the summer months tho...retrospectively if they're considering lupus, that would make sense I guess...

[MusicalFurbaby]

Hi Pinyet, sorry to hear of your troubles, especially with the kidneys. Lupus is really weird and can present with uncommon and rare symptoms, so just because you don’t have common symptoms, doesn’t mean you don’t have it. But most doctors and specialists will test for other things first, because lupus can mimic many other diseases, so you have to rule out those other diseases first. Lupus is only diagnosed when these other things have been eliminated. I’ve had allergic skin reactions but also rashes that are due to lupus, as well as kidney problems (don’t know if this is due to lupus yet—still under investigation!) so it can be a complex picture indeed. Best thing to do is investigate with your doctors and see what they find. Hope you get some clarity soon!

[Pinyet in reply to MusicalFurbaby]

Yes it's a weird one, for sure! Thanks for your response. My skin has just felt more sensitive this last year. But at the moment, my symptoms don't seem awful, just annoying. Whereas a lot of people seem to really notice their symptoms immediately. The only reason I went to the docs was for some moderate stomach issues (not even bad ones) and it just so happened she tested my urine which opened up this can of worms... hence me feeling a little perplexed. If it's already attacking my kidneys, one would think it would be having other, worse symptoms elsewhere..and showing inflammation on my bloods, etc. But perhaps not...and I have it all to come x

[MusicalFurbaby in reply to Pinyet]

Yes, I understand those pesky urine tests with incidental findings! That’s exactly what happened to me about 2 months ago! I’m in the early stages of learning about kidney disease, obvs, but it seems that you can have early stage kidney disease and be asymptomatic; this appears to be my current situation. Glad that you are not feeling too bad, with the skin sensitivity and stomach issues. Sometimes lupus can present as ‘mild’, with symptoms that are more nuisancesome than anything. And other times it can be debilitating. All the best to you!

[Pinyet in reply to MusicalFurbaby]

Yes exactly. Sorry you're having the kidney issues. They're not sure the kidney inflammation is due to anything autoimmune with me, either. They were basically ready to chalk it up to viral infection reaction (I had no protein in urine and kidney function has quickly returned to normal) until the ds-DNA flagged. But even now the kidney consultant said he'd be surprised if it's related...but I think it's too much coincidence(!)

Yes my understanding the same as yours...and that it may never progress beyond early stage if controlled. Will just need monitoring. xxx

[MusicalFurbaby in reply to Pinyet]

They think the same for me, that the kidney issue is unrelated to lupus, because of the way it is currently manifesting. That may be so, but I often wonder about the underlying inflammation in my body due to lupus, and whether that makes things like kidneys more susceptible to problems…anyway, all we can do is take the next step!

[Spanielmadlady]

Hi Pinyet. AI is so complex and affects everyone so differently .even those of us who have lived with it for years still find ourselves perplexed. After years of several hospital admissions with unexplained breathing issues I was only sent to my Rheumatologist when I went stiff. A routine labsick was off the scale and I was sent to the Renal unit at the Royal Preston. I ended up having a biopsy which revealed class v Lupus nephritis. I had no symptoms and often damage to organs is done before it becomes apparent. I now take immunosuppressants and my kidney function is back to normal. They give me no problems and my kidney specialist has reduced my checks to yearly . Bloods flit between positive and negative. Both my ANA and DS-DNA were positive but have been negative now for a few years and I rarely have raised inflammatory markers. Bloods don't always correlate with symptoms so a rheumy needs to look at the whole picture and not just a set of lab results.Stress is a huge trigger for symptoms do you notice any changes with stressful situations?

I suffer with photosensitivity and Uv levels are low just now so the symptoms that causes me are reduced until levels start to rise again the spring.

Fatigue is the one symptom I think that affects many of us the most and is often extreme.

There is an 11 point criteria for Lupus you may find helpful and keep a symptoms diary inc pics of rashes .

Kind Regards SML xx

[Pinyet in reply to Spanielmadlady]

Thanks for this

It sounds like your condition is mainly under control (?) I hope you're in a good place and that the symptoms you do have don't make you miserable. I'm scared with a young daughter - I want more than anything to be happy and well for her. I believe I do likely have nephritis but am hoping it can be easily controlled and that other symptoms don't really hit too hard. I will look at the 11 point criteria.

Regarding stress, the last year has been the most stressful of my life - averaging a few hours broken sleep each night due to my daughter has been a major factor in that plus trying to do a stressful job on top of that. So in the regard I absolutely understand why something that may have been dormant has been triggered.

Fatigue has been an element of my life for years - I had glandular fever aged 16 and I used to get v exhausted. That's not been so bad in recent years but I know the EB virus can be a AI trigger.

I know that the main thing is to reduce stress and live well. So am trying not to get stressed over all this (ha) 😁🤣🤔

[Spanielmadlady in reply to Pinyet]

It is frightening but it can all be managed if you are prepared to compromise, adapt and pace yourself. I have other AI illness Inc thyroid, b12 defiency and sjogrens. Last year was very stressful as I lost my mum and dog within 3 weeks then had 3 falls which resulted in breaking my elbow on 2 occasions . The result was a deterioration in my breathing which needed a heft dose of Prednisolone to bring it under control so whilst some aspects are under control there's always something else acting up.🙄

symptoms can make life miserable. Having dogs means being outside so photosensitivity is a nightmare but it just means covering up in clothes and sun cream from head to toe and limiting time outside in summer.

I developed stomach issues turned out the culprit was dairy so with adaptions there I rarely suffer now.

I sometimes have 'sleep days' which I used to fight against but have since learnt I need to go with the flow and if my body says sleep I sleep which is all very inconvenient when you have family but if you dont it compounds and you end up no use to anyone.

Google the spoon theory x

[driven]

Hi Pinyet. Don't be too terrified. Even if you have lupus there is no reason to expect the full raft of symptoms you have read about. The condition fluctuates as well. For me it literally changes through the day ...lousy mornings, better afternoons, lousy evenings and poor nights at the moment. In a few months I may feel OK for most of the day. It is a weird thing BUT the good news is that it isn't progressive so none of us need to feel we are approaching a cliff edge. Hope that helps and hope you can see rheumy soon.

[Pinyet in reply to driven]

Thank you so much for this. Reassuring xxx

I do have that feeling - with a 2 year old daughter my immediate fear goes to...is her childhood going to be based around my poor health? Am I going to be able to enjoy seeing her grow up ..etc and so on. What I'm trying to take comfort in is...had I not gone to the doctors for a small thing this would not have been picked up. Although I have a few minor gripes right now, I wouldn't say I'm ill. And maybe - with the right life management - this is as bad as it might ever get for me.

Last summer was the most stressful of my life through lack of sleep and life events. It's no wonder this reared up. Maybe with calmer environments and more sleep it will calm down again....looking back through my life I can see various things that could with hindsight be attributed to some AI stuff. Maybe I've had it this whole time and it's been very low-key 🤷

[OldTed60]

hi there. I have different immunology bloodwork but skin and GI symptoms started similarly for me so thought I’d just let you know that I have Sjögren’s (negative in bloodwork but biopsy diagnosed) and Systemic Sclerosis (positive blood work and symptom progression) . I also have Hypothyroidism and EDS (only recently diagnosed). When I was first diagnosed it was mostly inflammatory arthritis due to positive rheumatoid factor, high ESR and bilateral joint pain so things can and do change over time. As my rheumatologist said about my severe GI stuff, “every condition starts somewhere..”. I’m glad you’ve been referred to rheumatology but try not to worry. X

[Pinyet in reply to OldTed60]

Thank you. I will try (haha) I hope yours is mainly all under control x

[OldTed60 in reply to Pinyet]

Thanks. My Sjögren’s is well controlled with Mycophenolate but my systemic sclerosis is much harder to manage. I know all about waiting and worrying - most of us under rheumatology do. I forgot to say that I had almost identical symptoms and signs re the renal function dropping but then picking up and always have trace blood in my pee - have done for many years. Been tested by cystoscope, biopsy, renal ultrsound, CT scan and finally they decided that it must be my scleroderma and sjogrens causing this problem.