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.

Re. Raynauds:
Horses4 That is shocking! Your poor child. Poor, poor kid. Really hope the new Rheum is good. Bowel problems - I had no idea this was linked. I've always suffered.

redannie118 I didn't realise that you didn't have to have the purple thing. My symptoms are certainly consistent, down to the cold chin and ears. It upsets me as I love the outdoors - sailing and climbing... maybe stock up on layers...Wah!

Yes, it’s all linked - if you are prone to autoimmune illnesses, it’s a bit a lottery which ones you get. I am hypothyroid and have pernicious anaemia but was much older (24/25) at diagnosis than my daughter who was 6. Her illness is much more varied and severe than mine as well.

She is on methotrexate, adalimumab, pentasa and various other drugs and uses GTN patches for the Raynaud’s and masses of oilatum for the skin. You can get silver threaded gloves for Raynaud’s as well which are quite helpful.

We found out on Friday she has an active c.difficile infection after having antibiotics to try and rebalance her stomach in February so she is back on the antibiotics. It is unrelenting.

Her new rheumatologist is lovely and much more open and proactive so we have high hopes. The last one took the attitude of “she’s on treatment therefore she is better, it must be in her head if she is still sore”. She has a fab gastroenterologist and ophthalmologist, and sees physio and is about to be referred to a dermatologist and for more hydrotherapy and occupational therapy.

BTW I take photos for evidence for her specialists, not to be gruesome!

Just to throw another possibility into the mix - antiphospholipid syndrome. Shares some symptoms and blood results with lupus, and can lead to blood clots so it's important to know about. Crazymare it might explain your symptoms - although it's possible to have both APS and fibromyalgia. Such fun...

Thank you, DameFanny, interesting to hear about these, and also which conditions go together. Note made.

I'm putting together a "case notes" for my appointment so I don't forget anything.

It's so helpful to hear from you all.
HoneysuckIejasmine Sorry about your diagnosis. Wonder if mine is UCTD rather than SLE, as it does seem to be more about joint pain and fatigue, body temperature. Amazing you had pneumonia before you realised you were ill. I'm also rarely ill, so this has been quite a shock.

FuzzyPuffling Yes, these disorders are misunderstood. Sounds like eves are worst for many of us. Hadn't thought about that - it being end of day. Also, I cant stay asleep for longer than a couple of hours. Either dry mouth or aches wake me up. Lately, I've slept on, and am shocked some mornings to then wake at 8 am. I guess broken sleep means feeling more tired in the evenings.

Like the sound of your electric blanket!

crazymare20 I heard the same from my GP, but my symptoms have been marked and I think it needs further investigation. But it explains those bouts of good health that we all seem to have had at some stage.

FuzzyPuffling I think your case demonstrates how closely these bloods need to be analysed. Just re-read my report and it says I tested negatively for other Sjogren's antibodies, so it is just ANA and anti Ro. I wonder if this means UCTD, too.

Cocolepew Your case also shows this - that antibodies can be negative yet the disorder can be there. I swear this is why so many things have been missed with me. After my funny turn I thought it was diabetes but my OH then realised it might be thyroid. Yet that comes back clear each time.

Pleurisy certainly hints at lupus. I'm sorry to hear you've been suffering so much. I don't know how you manage to work with kids. I have had to take so much time out yet it seems feeble to just say - fatigue. I'm glad you manage day to day. Think I am just learning now. It does explain why I felt the need to scale back my life drastically, to just a few contracts I could do easily. It has been quite a few months. Annoyingly I was just told by one GP "it's stress" and that life events, like my divorce, caused it, but I have been through far, far worse and not had anything. I think emotional stress makes it worse but you can't avoid that, really.

Hard not to feel guilty. Some days I have done very little indeed. I'm so worried about my future. Arghhhh...

One tip I can give you is rest when you think you need to, don't feel guilty about it.
Good luck

Whoops, last post was so long but it helps to get it off my chest!
I appear to have pasted in someone else's sentence at the end, too!

Just wanted to reply to Horses4... Your daughter has given me such hope, dear Horses. If a child can put up with that, then I should, too... That's quite a list of drugs. Sorry to hear about your diagnosis, too. You've made me wonder about my DS, as he frequently complains of joint pain, and someone else pointed out to me that he's hypermobile. Your mention of Oilatum made me think, as we get through quite a lot of that - he has excema.

I will l look out for the silver threaded gloves for Raynaud’s. Anything to help will be good. No wonder I've been loving hot baths. My joints feel miles better with very hot water around them.

I've been on masses of antibiotics, because I've had one or other cyst on my face since last June. It's not clear if it is connected, but I wasn't responding to the usual antibiotics and ended up on IV ones 3 times. I can imagine your poor DD's tummy must be all over the place. I can't imagine how you cope with it all.

So pleased the new rheumatologist is good. At your DD's age, it's unlikely any of it can be psychological. Tsk!

Ha ha I didn't think the photos were for gruesome factor! I am glad now that I photographed the lumps on my face, even though they made me look like an alien! You've reminded me that I should show my rheumatologist those, too...

The fatigue was hideous, I was falling asleep all the time and nothing could wake me.
A few weeks on hydroxychloroquine made so much difference.
Its important to rest when you need to and don't feel guilty.
I went part time in work after my fifth bout of pleurisy and it really helped, luckily DH was able to work extra hours to cover the wage drop.

Sorry repeating myself there!

Coco...please tell me about your experience of hydroxychloroquine. I have been offered it and have asked for a few months to consider if it is the right thing for me.

What are the good and bad effects of it?

I have nothing bad to say about it, it literally changed my life.
I'm in a fb group and some people get a headache or upset stomach but it always seems to settle within 6 weeks.

Thank you coco. I know of a few people who have had bad nausea for a couple of months and I couldn't deal with that right now! The rheumy didn't seem to think it would help with my fatigue, which is my worst symptom,. but anecdotal evidence from other people says it might well help.

Did you have any hair loss/bleaching? (Mine is already falling out with the UCTD)

I was prescribed it particularly for fatigue.
I did lose a lot of hair at the back of my head, I had longish hair then so it was noticeably thinner. I actually went to the Gp because I thought it was my thyroid.
I always wear my hair very short now but can't say I've noticed hair loss since starting it, even when in a flare. I have decided to stop dyeing it and go grey though, hair dye definitely affects me.

I like your name btw, I'm a big fan of puffins

Hydroxychloroquine is a pretty standard first step for this sort of autoimmune issue, whether is UCTD, mixed or SLE. It’s usually well tolerated although obviously you don’t know how it will go for you unless you try it. Just make sure you get your eyes tested annually (it can very extremely rarely effect sight, but I stress the rare in that). When I was on it it bleached my eyelashes but mascara was an easy solution to that one.

I never heard of the bleaching before. Wish it would do my 'tache 🤔.
My hair only fell out when I wasn't on it.

My hair loss is a bit all over but seems more pronounced at the front. I've had my fringe cut deeper as it was looking extremely stringy.

(I too love puffins...obviously)

I think I lost some at my parting, it looks a bit odd sometimes, atm I have a number 2 all over so its not a problem

I'm in awe of your no2 all over Coco. I do DH's hair like this and think "how much easier it would be if I could do this to my own". I fear my head may not be an optimal shape.

I have a lovely round head it matches my big round face .
Im growing it a bit once I've cut my colour out.

high five Fuzzy! Hydroxychloroquine is, for me, the difference between normal physical function and being unable to stand up. It's that extreme. I literally can't stand if I don't take it.

I still flare on it now and then, mostly shall joints of the hands, but I'd agree with Coco that it's amazing.

I'd also never heard of the hair bleaching effect until recently. I've not noticed anything and I've been on it for over a decade.

A close relative has been diagnosed with RA and has had excellent treatment under private health insurance. She was told that research has come on greatly in recent years.
With exactly the same symptoms I was told that RA wasn’t worth testing for so just take Ibuprofen.
I keep hearing of people being dismissed without treatment by GPs and NHS consultants for different conditions. Thanks Tories, your intention to wreck the NHS and privatise sickness has been successful.

Oooh Coco, FuzzyPuffling, Honey, Juggler it sounds like hydroxychloroquine is the way to go. I've taken it as an antimalarial but can't remember any effects...maybe unpleasant on stomach...

MattMagnolia Can't comment much about politics and impact upon NHS on the back of this thread but am v grateful to my NHS-medic partner for analysing my bloods with such detail . My GP explained that it's not so much that they won't pay for testing, rather that at a certain level of detail, the GP will hand over to the rheumatologist, whose expertise is more appropriate for analysis.

I wasn't dismissed in any way - have been pushed up for rheum, if anything, I think. I don't have health insurance but have just been able to splurge on the odd private appt to make strategic use of the time...

Hey, others, I ordered Seven Seas joint care supplement which has glucosamine, omega-3, managanese and vits C,D,E. Supposed to be good for connective tissue and cartilage. Have (achy and cold) fingers crossed...

I take Vit D and Vit B, Omega 3 and magnesium.
I read that Vit D is one thing that helps to prevent/slow the progression of UCTD, and the other things are good for me too! No personal evidence, but it seems like a good thing (I'm largely vegetarian and it's not sunny enough here!)