LUPUS UK

London lupus center appt

I saw Dr Kaul yesterday at the London Bridge Lupus Centre - He diagnosed me with Undifferented Connective tissue disease, which may or may not turn into Lupus, but doesnt think I have full blown Lupus at the moment but do have symptoms of it. He also thinks I may have discoid Lupus due to the rashes on my body so I will have to have a biopsy on that - I have got to have a few more blood tests back at home then go back and see him for a follow up appoitment.

He wants me to start Hydroxychloroquine again and see how i get on with that or start another drug ( Cant remember what its called) similar to Hydroxychloroquine.

Not sure how to feel about the appt as i still feel like im in Limbo if I am going to get Lupus eventually

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Hi Leanne

Welcome to the undifferentiated connective tissue disease club!. There are many of us on here in it so your in good company!. It must feel a bit overwhelming to get a diagnosis and it's good you're starting treatment and will be well monitored as you need to be with this diagnosis!.

I can just say that the dominant symptoms for it are lupus ones , it's just that there are others too that your body produces so it's like it can't make up its mind which to be!. It doesn't mean you will get full blown lupus as I've had this diagnosis unchanged now for thirty years!. If your diagnosed with discoid lupus then that too you can stay with over time, doesn't mean you'll get the systemic lupus illness but does need close monitoring for any changes!.

I hope the Hydroxy helps, it is good for the skin . It will take a while to start working so I hope you'll be ok while it kicks in. Hope I've helped and keep us posted how you get on. X

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If you mean Dr Arvind Kaul, I met him at a lupus lecture last week, have to say he was incredibly knowledgable, I’d have more faith in him than my own rheumy, it can take a while to get a positive diagnosis and not something done lightly.

Hydrochloroquine are the meds normally started on for lupus, RA and UCTD anyway (before going down steroid route) and your post said he already thinks there’s discoid there so he hasn’t dismissed anything, sounds like he’s being thorough more than anything in trying to establish the extent.

He told us early use of hydro can halt the diseases progression in many cases so I think you should go with it seeing as the treatment would be the same initially anyway?

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Dr Kaul is great. I only saw him once but was very impressed (he mentioned the term psychosocial to talk about managing stress!).

I still don't get the UCTD/Lupus difference. Anyone here understand it?

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Hi treetop

It can be very confusing but UCTD is a collection of illnesses including lupus!. It means your body is producing symptoms of them and can't make up its mind which to be. The illnesses are RA, scleroderma and some myosotis and Vasculitis thrown in!.

Hope your doing well and this explains it for you. X

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Ah I see. Thank you and likewise x

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Treetop33, did you see him at a lecture?

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No a consult.

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Thats what i am confused with too - When i first saw my rhumy year ago he diagnosed me straight away with uctd and said it will develop into lupus - ( so i assume its a mild form of lupus?)

A professer took the diagnosis away from me this is why i have been to the lupus center for a correct diagnosis.

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Hi I am an elf

These conditions are very confusing and we're both right and both wrong. I was wrong saying UCTD includes myosotis. It does include symptoms of RA, scleroderma and lupus hence the term undifferentiated as you rightly said. MCTD includes myosotis.According to Triona Holden's book talking about lupus'. MCTD means you can have symptoms of lupus, scleroderma and myosotis!. Very similar. It's a milder disease than SLE , less likely to affect your kidneys and has these four main features!. Raynauds Phenomonen,Arthritis and myosotis. This anti RNP antibody must be present in blood for a positive diagnosis to be made!.

Both conditions have in common the fact they need regular monitoring in case of any changes!.

It was thanks to the forum that I got info and a proper understanding of UCTD as a diagnosis. For years I thought it wasn't a proper one. Thanks for your reply and hope I've made it clearer for everyone. X

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Don't t look on uctd as being in limbo land. It is a diagnosis in its own right and is treated in the same way as other auto-immune diseases. It means that doctors need to be aware of other disease characteristics that may not typically occur in lupus. Many people's conditions do not go on to further differentiate. It is the treatment not the title that matters.

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I too have UCTD & have had it for 20 years. It is a definate diagnoses that can change or morph into a differentiated Connective Tissue Disease such as Scleroderma or Lupus, to stay the same as Clareb67 so rightly says. In some cases it can go away I've read too! I had the nRNP antibody for years but I'm now negative. Unfortunately that's not made a huge difference though. I started off with mainly Lupus symptoms but now have been told I have some signs of limited Scleroderma. You can have any of the symptoms of any of the connective tissue diseases but as Misty43 says, not normally organ related problems. My biggest problems are swallowing/digestive problems and fatigue. It took me a long time to realise you are really ill with just this diagnosis and doctors now recognise this. I kept thinking I was not explaining how I felt properly as it was impacting on my life too much as a mild disorder. I think in recent years rheumatologists treat this much more seriously and not just as a watching game for the real illness if it comes.

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I agree. My rheumy nurse is always emphasising the importance of keeping the disease under tight control ie my knees flare frequently and this is a sign that damage could be going on behind the scenes. I do have lung involvement but I hope not the life limiting type. I feel lucky that my kidneys don’t seem to have been affected.

Mine is such s hotchpotch of autoimmunity and includes myasthenic features too.

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Have you removed all sweeteners from your diet? All your symptoms can be produced by them.

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Here's a pretty good definition of UCTD:

hss.edu/conditions_undiffer...

I would say I have had this for 40 years, although before there was this diagnosis. I did get put on plaquenil, but I had been sick for 7 years. That did work for me and I went into a close-to-remission for many years. It had been affecting my nervous system early on, but that symptom also got better with plaquenil. In 2012, my neuro symptoms got worse. Now my diagnoses are lupus-like UCTD, anti-phospholipid syndrome (APS), and Sjogren's Syndrome.

With everything, we don't know what the future will hold. One piece of advice I'd give you is to follow the suggestions on sun-exposure, even if you don't think you are photosensitive. I have had new symptoms arise after sun-exposure when I didn't know I had a problem with the sun, or when I thought I wasn't currently having a problem with the sun.

One of the reasons I think UCTD makes sense as a diagnosis for me is because after these many years, my organs or good or not severely affected. That and my blood tests are either normal, or just barely positive.

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Hello.

I really hope some of the replies above have helped you to deal with this diagnosis. You do have a diagnosis. UCTD. You are not in limbo land. And now you have a treatment plan too. That is good news, although it might not feel that way right now.

I saw Dr K back in April, after struggling to get a correct diagnosis and adequate treatment plan locally. I found him to be attentive, kind, understanding, extremely professional and knowledgable. I know he has a great reputation and I think, from memory, he has very close links with one of the support groups in the London area. So he deals with patients inside and outside of the hospital environment.

I was so impressed by him, that I have booked to go back at the end of October. I was told by the clinic that people fly in from all over the world to go to the London Bridge Lupus Clinic. There are a few of us here who have seen him, not just me and Treetop33.

I hope that you are coming to terms with this and in time, you might feel better about the diagnosis you have.

Can I ask, did he mention Mepacrine? Only, he recommended that for me. It's the same family of drugs as Hydroxychloroquine. It's anti inflammatory. It's also an unlicensed drug and quite expensive. Luckily for me, my GP agreed and prescribed it for me. I take 50mg 3 times per week. It has helped me a lot. It helps with skin issues, aches and pains and lupus/SCLE?DLE. I have posted about Mepacrine, so take a look at my profile.

I'm happy to answer any other questions you have. I hope I have helped a little.

Best wishes

Wendy

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Thank you for the comment.

He is properly the best dr I have saw, so lovely.

Yes that is what he suggested i try if my Rhumy allows me due to how expensive it is, if not just start hydroxychloroquine again.

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I take the mepacrine and Hydroxychloroquine, (plus mycophenolate mofetil). Like I said, any questions just ask. Oh and the mepacrine has helped with my fatigue too.

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guysandstthomas.nhs.uk/reso...

That's the Guys and St Thomas' leaflet for patients on Mepacrine.

I hope it helps.

Wendy x

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