advice

[Ell5]

Hello!

I havnt posted before but was looking on the lupus Uk website and wanted some advice if possible.

I have been struggling with weird symptoms for a while since my son was born 4 years ago- ( then cot covid and was really unwell so was all put down to long covid)

I have positive APS antibodies, raised IGM, dsdna 28, low c3, negative ANA, weak positive ro52 and scl, etc. All done by the covid clinic who then ref to rheum and discharged me.

I have been waiting for a rheumatology appt for a while and havnt got a diagnosis of anything yet..

For the last 3 weeks have been feeling really unwell, so tired, no appetite, metallic taste weight loss, nausea, burning eyes, really stiff, sore fingers but also with bad abdominal pain I could add more! . Is that something that is a sign of a flare up? Its really hard to know what to be concerned about and what not to be as feel in limbo feeling awful.

I am a nurse and hard to navigate and don’t want to waste anyone’s time and don’t want to end up in ED tbh but have 2 small children and need to be well! I do feel like am going crazy as general blood tests/obs etc are ok. Have been taking hydroxychloroquine since June. If I do get a lupus diagnosis, does it get better?? as am fed up of feeling so awful!

Thankyou for reading any advice appreciated/ or what to ask the rheum team specifically? Xx

[StriatedCaracara]

I ended up being diagnosed with Undifferentiated Connective Tissue Disorder UCTD after having had covid and long covid.

I had POTS and arthritis previous to covid but then many of the symptoms of Lupus were added to this after covid.

I was discharged by local NHS Rheumatology based on bloods. I had positive ANA but negative dsDNA. The consultant said that UCTD was too difficult for to diagnose.

Then I came across the 2019 EULAR ACR Classification criteria for SLE. This only allows one thing to be scored from the left and right column in the table below.

I was scoring 6 on the left side and nothing on the right side

A positive ANA is an entry criterion which people don't always have too.

ncbi.nlm.nih.gov/core/lw/2....

(Although this is meant to be used just for research maybe some are using it to restrict caseload. Who knows?🤔

In the past sero-negative Lupus diagnosis was possible. I'm not sure if patients being referred since the 2019 classification criteria came into being, are getting 'sero-negative lupus diagnosis' much at the moment. Have not come across research on this, and nothing posted here on the subject.

I hope the criteria get quickly updated so the wider group is helped sooner.)

Although I don't have health insurance, I went private for second opinion as I felt so poorly. Family helped.

I emailed / phoned the London Bridge Lupus Centre telling them my situation and they advised.

Appointments after that set me on the right course and it is possible to be referred back to NHS. No regrets.

One blood I might get repeated is antiRNP as I think my symptoms may have small elements of SSc and Polymyositis, as well as SLE.

I'm on vitamin D as well as hydroxychloroquine. I think low vitamin D levels contributed when I got covid. So that was monitored.

Hope you find the right place to go. Take care. Hope you feel better soon.

[dg70]

Sounds like a flare. You need to speed up your rheumy referral as once you see them you have a point of contact for when you feel a flare up. At least you're on hydroxy which should bring inflammation down, however, hydroxy is not working for me now and I'm on the highest dose I can have. Its the first line of defence before they bring in other drugs to try and stabilise you. I have all negative bloods except pre-diagnosis my dsdna measured at 50 although all hospitals use different scales of measuring. This got my lupus diagnosis and my sjogrens was diagnosed from symptoms alone. The moral of the story, if you're bloods are negative it doesn't mean you don't have an autoimmune condition as many of us are negative. Keep a diary and take pictures. Make sure the Rheumatologist you are seeing is an expert in autoimmune, Lupus especially. Most of us go private at least once and more often at the start to get the right diagnosis from an autoimmune specialist rheumatologist who knows what they're seeing and doing, as many don't! Your journey may not be easy in diagnosis and treatment but once you are, you can get contact with the rheumatology unit helpline whenever you have a flare coming and they usually reply and prescribe within a couple of days. Sorry but autoimmune conditions do not get better even with drugs but they are manageable and being a woman as you age it gets worse usually. We just have to hope they find better and more effective drugs as time goes on. Fatigue and joint pain can be the worst to deal with. For me that's constant and has been for nearly 20 years now. You can get remissions but for me its only a day or two then back to sleeping in the daytime to keep going. Read up and be prepared and get a support system in place to help with the children and be ready to alter work patterns as this may become harder as Lupus progresses (if you have it). Rest when you can and pace yourself as this is a long haul condition with a lot of ups and downs.

[dg70]

Oh and its good to join a group if you enquire on Lupus UK. The support and advice you can get from a group in your area is invaluable. Recommendations on doctors, diagnosis, medications etc.. and just general support has been so helpful to me. My group has whatsapp, zoom meetings and meets face to face as well. There are many who have been going through the same issues for years that can help so much, especially at the start of the journey which is where you are.

[Butt3rf1y]

Everyone reacts differently to the same medicine sometimes but if it is sufficient for you and what you are hoping for then sure you should try it ❤️🧡💛💚💙💜 Hope you feel better soon 😊

[Murp17]

I am oh hydroxychloroquine and have been for a while once you get a diagnosis of lupas they will give you the correct medication & it will get easier.

Sorry your going through so much try phoning rheumatologist and see if you can get a sooner appointment even a cancellation

Hope you feel better soon xxx

[BeeManShrop]

Hello So sorry to hear of the troublesome symptoms you are experiencing just now.

Firstly I am not medical but do have experience of the hydroxy used my my wife for the past 3 years. She has had RA for the past 20 years and had been treated with methotrexate.

You say that your dsDNA is 28 -- there are two types of test for dsDNA and both have different scales. Firstly, the Crithidia system shows any measure over 75 to be positive. Secondly, the Elisa system (which I think is an automated test) shows anything over 9.9 to be positive. The dsDNA test is a good indicator of Lupus. In my wife's case she was over 1000 (Crithidia) when she was very ill indeed (in 2020 -- 6 weeks in hospital with no diagnosis on discharge). Eventually, SLE was diagnosed and hydroxy prescribed (300mg/day). It took 12 months for the hydroxy to start to bring her dsDNA down then very slowly over the next 18 months. It took until Sept 23 before the dsDNA reached the "normal" range, by then the test was Elisa and she was 8.4. This is our story and it may be different for you but please try to be patient; it could take some time before you realise that your symptoms are improving.

The good news is that she is much better now than where she was in 2020 but there are still remnants remaining like fatigue and painful joints (but this could be osteoarthritis -- we don't know for sure).

Your rheumatologist is the person to put the blood results together with your physical symptoms to firm-up on a diagnosis that will put you on the road to recovery. The good news is that you are already taking hydroxy which should be beginning to take effect (albeit slowly) and you may not yet see the benefit.

Hoping this story gives you some hope that there is a light at the end of the tunnel.

Best wishes for a happy Christmas and a more healthy New Year for yourself.

[MusicalFurbaby]

Hi Ell5, what a horrible time you’ve been having! Yes, it sure does sound like a flare. A flare can mean anything from a worsening of daily symptoms to needing hospitalisation, so often when I experience more pain/sores/fatigue than usual, I theorise I’m experiencing a flare-up.

The bloods are complex so not sure I can help much there…but to your question of whether it gets better…it’s hard to say, as everyone is different, and there are many factors that affect the progression of lupus. For most of us, the disease is marked by periods of low disease activity (ongoing, stable symptoms) interspersed with flares (increased disease activity). So sometimes it feels like things are getting worse for a while, and then they get better, and then they get worse again…you get the idea.

It’s a good idea to stay in touch with your doctors and get reviewed if you do experience a flare, especially if you have any symptoms that worry you. There may be options the doctors can discuss with you. Hang in there, and let us know how you get on.