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LUPUS UK
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Confused!

Hi All, new to this platform. Goid to see so much support.

I have been under investigation for 4 years, first for MS now lupus. Positive ANA , facial rash, flair ups when stressed or tired. Extreme fatigue. Most days i woke feeling like I had done a heavy session at the gym. When i have flairs my joints swell. Rheumatologist said he doesn't feel it is lupus but treating me for lupus to see if any change. I have had steroid injection and also on 400 mg of hydroxychloroquin. This was about 5 weeks ago. I have felt so much better since having the injectuon. And drugs. So in my eyes knowing my body and the symptoms it is clearly lupus.

Im just so frustrated with the whole process now.

Anyone else been in similar situation?

Xx

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Hi Sallmell and welcome :)

Lupus can overlap and mimic slot of conditions so it is hard to diagnose. The rheumatologist is probably trying to rule out other issues, there is a condition called UTCD or mixed cognitive tissue disease, which is an autoimmune disorder and treated like Lupus but just means you don't meet all the lupus criteria.

If you are already feeling better after treatment that would suggest an autoimmune issue. I know it can be frustrating not having a name for what you are suffering however be glad you are being treated for it! I would keep a diary of your symptoms and when/ why you feel better and worse.

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Thanks

I thought lupus was an autoimmune disease? X

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It is, sorry if I caused confusion! I just meant to be diagnosed with it you had to meet certain criteria. Here is an NHS link: nhs.uk/conditions/lupus/

I meant even if you don't have lupus or it is uncertain as long as they know it is a autoimmune disorder they tend to get treated very similar.

You can find more info from the lupus UK website :)

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Thanks lovely. As you say, im just glad now after 4 years to be treated

X

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Welcome. I’m somewhat new as well. Unfortunately it all presents very scattered and we have to wait for more symptoms as time passes to get a definite diagnosis. It can be a very long process. For me it was almost 20 years because right in the middle of things I went into remission completely. (Thankfully bc I had kids in college!) Sometimes its a day at a time and sometimes it’s 60 seconds at a time. No matter what labels you get you will always deal with a new day, every day.

This is a wonderful group of people.

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Thanks for your post. I thought I was long with going on 5 years. I agree with you no 2 days are the exact same. I am grateful now to actually be receiving treatment and feeling like a healthy 45 year old and not like an old woman struggling to move.

Xx

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I really feel for you, as you have scary symptoms but no clear diagnosis. Apparently, lupus and MS can present very similarly in neurological symptoms and on scans. This has to be a big worry for you. Know that your doctors are trying to determine which it is and not there may be easy answers. It seems like a real dilemma for rheumatologists and neurologists.

That is good you are responding to treatment. You might want to ask what the significance is of your fast response. I thjnk steroids are used in both illnesses.

Because your case is so unclear, you might want an opinion at a lupus or MS center.

Lots of people here who are thinking of you and understand the very difficult position you are in.

Keep us posted, and keep getting good.

K

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Thanks so very kind x

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Hi, Sallmell. I used to be on hydrocortisone IVs a while ago. It was bad. I barely managed to get up from bed to do basic everyday activities. I couldn’t eat, my joints were always hurting. I understand your concern, but unfortunately lupus is a disease that takes a while to be fully diagnosed, because the symptoms vary a lot from one person to another. It is not enough to have a positive anti-dsDNA antibodies test result or abnormal C3 and C4 complement proteins levels. However, even if all other options are excluded and you end up being diagnosed with lupus, you don’t have to be so stressed about it. Yes, flares are sometimes really bad, but trust me, things are going to be better. I have been diagnosed with SLE in 2016 and I currently am in remission. I am taking 10mg of prednisolone, 200mg of Plaquenil (hydroxychloroquin) and mycophenolate mofetil every day. I am taking care of myself, avoiding stress as much as I can, together with anything that may cause inflammation or flares. My joints are not hurting anymore and I feel better than I ever had in my life (except for maybe occasional fatigue, mild anxiety, weakness or anemia). Therefore I encourage you to be optimistic, to have a positive mindset and to believe that you are worthy of joy and happiness in this life and that no storm will last forever. Take care and keep us updated with your diagnosis. Always here if you need someone to talk to. Be brave! 🙂

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Thanks so muxh. I have learnt to manage the flairs amd I exercise every day just 40 min walking but better than nothing. I used to run but I can't manage it now its too much and find im more tired. I eat healthy and have lost weight as needed too. I feel so much better on meds x

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I’m glad to hear that. You are the only one who can ease this journey. Best wishes! 🙏🏻

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Hi there and welcome. I have a closely related rheumatic/ autoimmune disease called Sjögren’s which can also be misdiagnosed as MS because it presents so similarly in some people - very much so for me.

There is a more specific panel than the first go-to ANA and Rheumatoid Factor antibodies which is called the ENA panel. This is usually ordered by rheumatologists and gives specific pointers to the person’s connective tissue disease profile.

So Lupus is actually only one of quite a few rheumatic diseases that present quite similarly. Your rheumatologist is probably looking to see if you have the Lupus antibody, anti dsDNA - because a positive ANA isn’t always specific enough to diagnose a person.

People like me with sister diseases such as Sjögren’s or Scleroderma also usually have positive ANA, as do some of the healthy population. There are also mixes and overlaps so quite a lot of us here don’t have a Lupus but may have overlapping diseases, symptoms and blood work. It’s very complicated but you certainly aren’t alone in not yet having a name to pin to yours.

The treatments are broadly the same for all these diseases, mixes and overlaps so try not to fret too much because the main thing your rheumatologist will want to know is that the treatments have worked - which in your case they thankfully have. This is fairly diagnostic in itself!

Take care and please enjoy the steroid break. 😊

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Sallmell — just re-read your post. Am I correct they ruled out MS?

To let you know that many of us have at some point had MS brought up, I was stunned when a new neurologist, an MS specialist, asked me if they had ever considered MS with me. And that was after many years with a diagnosis of undifferentiated connective tissue disease.

K

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Hi lovely, yes they ruled out MS x

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Well, I think that is very good! I read once that doctors hope it is not MS because the other conditions have more effective treatment. As TT said, it may not be specially lupus but in the same category. I think it is very encouraging that you are responding to the steroids!

Glad you have reached out. There are many of us with a variety of neurological issues.

K

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So glad I found this platform. Thank you all x

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I’m in exactly the same position. Had steroid injection and then now on hydro chlorine. I unfortunately at the moment don’t feel much better however rash symptoms and joint swellings have decreased.

GPS have called it systemic lupus. My first meeting with the rheumatologist he felt it was post viral because I had had shingles and flu. (I knew it wasn’t) I’m usually very fit and well working full time, training 6x a week and caring for 3 children.

I have positive ANA, negative DNA, boarderline Lupus anticoagulant, high ESR and some others but not sure and got a diagnosis the next time I saw him of undifferentiated which baffled me as I meet at least 10 of the criteria. Including positives bloods. I am also being treated for Lupus. So even with bloods that are pointing I think they are very cautious with diagnosis. It is still very early days for me so I understand airing on the side of caution. (I’m about 8 months in) I have had a second blood test now which show higher results so who knows may change when I see him. As my GP says the main concern is bringing down the inflammation in my body. I am having a biopsy on my parotid because GP thinks I have a more specific type of lupus that affects those glands. 🤷‍♀️ So maybe that will reveal some more answers.

I think the main thing is that you are supported and acknowledged for what is happening and how you are feeling.

xxxx

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Interesting that you have UCTD diagnosis when you seem to meet lupus classification. We have similar labs. My doctor’s reasoning with me is negative DNA and normal complement. Your word “cautious” is a good one. In the first years, they tend to watch closely to see how things develop.

Hope they find a medication that is effective for you.

K

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I definitely meet the classifications and he has seen all the evidence. DNA is negative in I think 60% of Lupus patients so I am slightly confused as to there being so much emphasis on this. I think if I’d have suffered for some time they may have diagnosed Lupus. My bloods have come back worse this time with Lupus anticoagulant boarderline again and that’s after steroid treatment so it will be interesting to see what he says when I see him again. Keep me updated on your progress :)

Best advice take photos and I documented a diary this helped me immensely! x

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I think with you he is still watching closely. I was diagnosed with UCTD many years ago when they were just recognizing the syndrome. Sometimes they refer to someone like you as « early UCTD » and me as « stable UCTD. ». It is the total picture. Even though the anti DNA is only positive in sixty percent of patients, it biases against lupus in unclear cases. It is confusing! But when I asked my doctor to explain it, it was clear why his reasoning. You might want to just ask.

Good luck with all of this.

K

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I’m currently being treated by Hydroxychloroquine to see if I have lupus rather than fibromyalgia. It is a frustrating process not having a specific diagnosis as I would really like to inform my work as have had a year of being very poorly and dragging myself in each day but it is a struggle. I’m so glad you are feeling a bit better! Sometimes I do feel a little better but haven’t been on Hydroxychloroquine for long and know it takes time. I think autoimmune conditions can be a bit sneaky at showing themselves hence all the uncertainty.

Hoping they get to the root of your issues soon :-)

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Thanks hun you too x

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😔. MS. Sounds very familiar with me. I have skin issues, muscle issues, fatigue, brain fog . To be honest it’s my skin problems that have kept me positive that it isn’t anything too serious. I’m currently diagnosed as UCTd with suspected Mysiotis. My body some days is like that of a 138 year old.

It’s good that you are responding to treatment. These illnesses are so complex and many of the mimic each other x

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