Blood test positive for antibodies - now what?

[JustRestingForNow]

I had somebody blood tests come back positive after I had a weird paranoid episode a few weeks ago.

The antibodies are antinuclear antibodies and anti-Ro.

Has anyone else had this? I am so worried about things from now.

The episode was out of character but I find myself analysing my thoughts & feelings, plus have loads of physical symptoms.

Meant to add, my physical symptoms are:

• achy limbs, especially my joints
• fatigue. I feel like I’ve climbed a mountain sometimes
• excessive thirst, dry mouth
• prickly throat
• I don’t know if it’s connected but I’ve got cystic acne and had to be hospitalised more than once with a big cyst on my face

My heart races and I’ve got insomnia but these could be more stress than the above.

Has anyone else been in this position? I’m not sure what to tell my workplace as I don’t want to lose my job.

Just bumping this. Has anyone had this happen to them?

It could be several different things. It sounds like how a friend of mine was when she was diagnosed with Lupus. Do you have a follow up appointment?

They’re lupus/sjrogens antibodies. Speak to a gp/rheumatologist, and don’t google too much; if you have either condition they are treatable and you don’t want to scare yourself ( I have both and lead an entirely normal life). Don’t panic.

Those blood tests both indicate an autoimmune condition of some sort, I'd expect you'd be called in for more testing as a next step?
I've had both of those positive before and sure enough have two different autoimmune conditions. It may take a referral on to a consultant to find out what the issue is

Thank you all so much for responding. I am really shocked.

First set of bloods came back with normal TSH from GP.

My partner (medic but unrelated) made an off the cuff remark that it might be Sjrogens and I saw a private GP, who said it was stress but partner asked for blood profile.

I have symptoms of both Sjrogens and lupus, but I know there are a few different things it could (also/instead) be.

I could book a private follow-up but as I have an appointment with my GP tomorrow anyway, I will take the results then and ask for a referral to a rheumatologist.

Juggler82 I would be very interested to hear how you manage your symptoms and life... Thank you for reassuring me. I must admit, I had a bit of a cry. My mother died of non-Hodgkin's lymphoma when she was v young, so there is prob some genetic link. My throat feels like it has spikes down it and I am constantly fatigued, and I' m not used to feeling this emotional and alone.

Wahhhh.... :-(

Depending on what the diagnosis is there’s various medications available these days. It’s might be a bit of a trial and error thing to find something to suit/work for you but if you have a decent rheumatologist you’ll get there. In the mean time you could ask for biotene mouthwash from the gp - that’ll help with the dry mouth. There’s other similar products too. Take it easy as much as you can and whatever you do don’t risk getting sunburn - lots of people with lupus have flares after too much sun.

Juggler82 Thank you for further reply, I had missed this. I have looked up that mouthwash and similar things for dry mouth. Yes, will stay out of the sun! Am finding ibuprofen helpful, although I have an odd vibrating/tingling sensation in my left foot and my extremities are freezing cold all the time.

I had another set of bloods for other antibodies which have come back clear, but as it's from my NHS GP, she said they were limited as to what they could measure. She referred me to a rheumatologist and an appointment has arrived for next month. I'm going to stick with NHS... hoping it doesn't need speedtracking.

I'd be interested in hearing from anyone else with this... please do share...

I have a high ANA titer and have been diagnosed with Undifferentiated Connective Tissue Disease. It's a bit of Lupus, a bit of scleroderma and a bit of RA, but not enough of each to be defined as such. My main symptoms are fatigue, "dodgy" kidneys, Raynauds in my hands and hair loss. And a few other things!

I saw a rheumatologist recently but she seemed somewhat unconcerned. I was offered medication and occupational therapy but decide to do a bit of research first. As regards the OT...Me:" What will they be able to do for me?" Dr "Ummm..give you some gloves".

I have kidney function tests every 4 months and see the rheumy every 3 months.

At the moment I just manage the symptoms; rest when I need to, early nights every night (I'm always in bed before 9pm), look after my kidneys, eat well and exercise when I am able.

I do find that it can be a hard condition to manage, mainly because I don't look ill, no-one understands the condition or take sit very seriously) and support is hard to come by. Hence looking after yourself!

Following this with interest. I've just had a diagnosis of mixed connective tissue disease and it's all a bit confusing!

I get the impression even the consultants aren't awfully sure what its all about. My nephrologist commented "In 20 years time or whatever, then maybe we'll know what all these blood tests mean". Umm thanks!

Coming back to this thread to reply. Wow, so I'm not alone! Care to share info? It's so helpful.

FuzzyPuffling alslo wonder if I have Connective Tissue Disease. It sounds like these disorders are none-specific. Your symptoms sound familiar. Was shocked by the rheumatologist being unconcerned! Like you say, it's hard to have a disability that is unseen. I've had to take so much time off work but as long as I have time to put myself together and feel rested, I can fit in a few hours here and there.

Justonedayatatime11 You too! Yes, confusing...

Do either of you have ASD? I was diagnosed a few years ago and know that autoimmune problems are common, but didn't realise I would have them.

My update: other bloods came back clear.
ESR, FBC, Rheumatoid factor, CSR, all normal.

So just anti-Ro and ANAs. Potassium was low before but is just on low end of normal now.

I also had a dentist's appointment and he said my saliva production is normal. However, I still have a spiky throat and chest, sore lips, ulcers. My mouth feels all burned and sore on the inside.

Less tired this week but I get so very, very cold on my hands, feet, knees and nose. 2 hot water bottles again last night. My hips and knees seize up so I have difficulty walking.

Rheumtologist appt came back for 1st May. Not bad considering I was told there's a 3 month wait. I could see a private rheumatologist next week but I don't know if it is worth it...

Maybe see private, get investigated, and then have NHS follow up on the 1st? Wonder what you would all do.

Thanks again for sharing.

I have tested twice with a really high ANA titre, and privately seen a well known Lupus rheumatologist. I don’t have any other antibodies (particularly lupus) in the follow on tests. It has ended up having no bearing on my day to day life.

Apart from consistently recording a bit of blood in my urine, and some hair loss, I’m otherwise asymptomatic. The rheum ultrasounded my kidneys & said we can medicate you if you want, but he wasn’t sure it was worthwhile. I just eat well, go to the gym, try to manage my stress & hope it doesn’t turn into something worse. I did my work BUPA health check with blood tests etc recently and they were happy with me, normal ranges for everything.

Sadly, I suspect that the antibodies may reflect endometriosis as I am about to have an investigation as we are struggling with infertility. Again, no symptoms at all but my mum suffered.

On the flip side I NEVER get head colds and viruses as my immune system is a bit too efficient which is apparently a pretty common side effect of autoimmune disorders.

What I’m trying to say is don’t worry - they tend to go on symptoms rather than test results. The rheumatologist will be much more interested in your physical symptoms. The ANA result is just a sign post.

Sounds like Lupus all day. Even down to the mouth ulcers. Symptoms can switch themselves up though so it affects you differently each flare up. It's such a horrible and misunderstood illness

Cold nose? Yes yes yes!
It's hard to describe the particular unpleasantness of a really cold nose. I am currently sitting here with the funnel neck collar of my hoodie pulled over my nose! I need to invent a nose warmer.

FuzzyPuffling YES! A cold nose is sooo uncomfortable. Sometimes makes me feel nauseous. I wondered about inventing some sort of balaclava. Mine gets worse in the evenings.... Am already shivering tonight.

pinegreen My concern is that I do have symptoms. It was those which led me to getting extra tests. I had a very, very odd psychotic episode and have never had any mood problems. Then I noticed this had been at the same time as having severe insomnia. My appetite had gone and I lost nearly a stone overnight. I was waking up with aches in my joints and feeling fatigues - very weird not being able to sleep because of extensive tiredness. I've had to take time off work because I am exhausted. It's just those 2 antibodies.

Glad yours is good! Yes, rest and diet seem to help, great you can get checked and all is within normal range, but v sorry about your endometriosis. Great about lack of colds! I don't think I get very many, now you come to mention it. The only time I remember having flu was when I had the vaccine one year. This is why I don't understand why I suddenly feel so unwell. And the thirst! OMG.

Historydwee Will be interesting to see if it is lupus . The changes in flare-ups would explain why I've not noticed it before now.

Redannie118Despite cold extremities, I don't think I have Raynauds as they are not purple but I do have some of the other symptoms: I was previously diagnosed with IBS. Yes, difficulty swallowing and ridges on nails. Mood swings, yes, have felt very low over it.

It's so good to hear from others. Thank you.

I also have a diagnosis of UCTD, but mine is more like classic SLE. Mostly involving joint pain and fatigue.

I also rarely get minor illnesses. I did get pneumonia last year and didn't realise until I collapsed and was admitted to hospital for a week!

Someone else with UCTD . We are a rare bunch I think. And misunderstood.

I have some joint pain at night (knees) but I notice that everything is worse when I am tired or stressed, so in the evenings I get suddenly very cold and shivery. I have lots of cosy rugs and throw on my sofa, the best one of which is heated like an electric blanket!

I had both those show up in my blood work a few years ago but negative for everything else. Rheumatologist said 5% of people have this blood work and are perfectly healthy. He wouldn’t diagnose lupus as I was negative for something else (can’t remember what). He diagnosed me with fibromyalgia instead

Apart from my ANA being consistently at 640, none of my other bloods are showing anything. I'm being tested for antiphospholipid syndrome but I think that's why (along with the symptoms) they've gone for UCTD rather than anything else.

I have Lupus diagnosed on symptons, I never have antibodies.
Make sure you take a list to the rheumatologist, its easy to forget what you want to ask.
I also don't get common illnesses, even though I work with children, but get very ill during a flare.
I've been in one for 5 weeks and have pleurisy, which is normal for me, costochondritis, a suspected pulmonary embolism and varios aches and pains.
This is the worst I have ever been but it will pass and I manage prettty well day to day.
One tip I can give you is rest when you think you need to, don't feel guilty about it.
Good luck

My 9 year old has UCTD with Raynaud’s, arthritis, uveitis, hypothyroidism, and bowel problems (unclear yet whether it is a IBD or IBS). ANA and a few bits of the ENA panel were positive but borderline in 2017. This was the state of her hands a few weeks ago... She is on lots of meds but still struggles. She is changing rheumatologist which we are delighted about as the one she has had for the last two years has been so dismissive.

Hope you get a way forward soon, it’s horrible.

Oh Horses your poor DD. I hope her new rheumy is better, mines crap too .