Lupus or Mixed Connective Tissue disease? 🤔

[Susieliz39]

Hello everyone

I’m confused! (Doesn’t take much these days!) I’ve had a consultant review today and he referred to my diagnosis as mixed connective tissues disease. Previously, I understood it to be lupus. 🤷‍♀️ Are these the same, same group or do I know have MCTD and not lupus?? 🤔 Has anyone in here had any experience of this? We didn’t get round to clarifying this as we were busy discussing my ILD and now possible kidney involvement. 🙄 don’t suppose it matters really…. Lupus or MCTD, the outcome is the same……. just rubbish. But we all know only too well about that.

Hope you all have a peaceful and enjoyable Christmas 🎄and a happy and as healthy as possible 2023. Sue x

[PMRpro]

Does this help

mayoclinic.org/diseases-con....

I suppose I might call it Lupus Plus ...

[Susieliz39 in reply to PMRpro]

Many thanks for that PMRpro. It sums it up perfectly. I think Lupus plus is a good way to describe it. Complex beings aren’t we?! 🙄

[PMRpro in reply to Susieliz39]

I have always thought that a/i disease doesn't really come in tick boxes - each of us has our own particular version, you have Susieliz39 syndrome, I have PMRpro syndrome. It is always really symptom management anyway, no cure, but it seems to confuse doctors who don't appreciate the finer points and think everything should fit their textbook from lord knows when. You have/don't have x, y, z so it can't be ..." And don't get me started on age ...

[Lizard28]

I was diagnosed with MCTD, it seems to be an overlap of several auto immune diseases. Recently my dermatologist diagnosed skin lupus into the mix. Medication seems to be the same.

[Susieliz39 in reply to Lizard28]

Thanks Lizard. Yes, consultant did say meds or current dosage won’t change. Suppose it’s just my mindset that has to. I’m starting to wonder which,part of me is next to go wrong!

[Lizard28 in reply to Susieliz39]

Me too, there is always something weird going on in my body, best wishes x

[larainehudson49 in reply to Lizard28]

Hi, you've certainly hit the nail on the head! So frustrating when can't get an answer for so many symptoms! Best wishes

[CecilyParsley]

I feel for you Susie my diagnosis has changed repeatedly over the past 13 years. Initially Lupus and APS, then Lupus and Fibromyalgia, then Bechets and Fibromyalgia , then Lupus again, then UCTD, then Lupus, Bechets and Fibromyalgia , then Fibromyalgia and “ hysteria”, then UCTD and definitely no Fibromyalgia. I have had my current Rheumatologist for over three years and not met him but he prescribed medication over the phone. My symptoms remain the same. I hope you get some clarity and consistency. I know how frustrating and soul destroying it can be xx

[Susieliz39]

Oh gosh Cecily. I bet you don’t know if you’re coming or going with all those diagnoses! It is important to us to know what it is, even though the problem or treatment plan doesn’t change. It just adds to the stress of it all. And boy is it stressful at times! Take care x

[ExtremeDuvetDaze]

Hi Susie, my diagnosis for the last two years has been MCTD but I’ve gone from being diagnosis initially with Lupus 20 years ago then shortly after UCTD, 12 years ago it all got worse so it then became UCTD and Fibromyalgia, getting worse still I saw a different ( awful) rheumatologist 2016 who said I had subcutaneous SLE which I disagreed with so I got a second opinion and was diagnosed with SLE later that year but then that changed to Overlap syndrome then CREST and Overlap then back to UCTD and panic disorder ( never had a panic attack in my life so I challenged the rheumy on that one! )then finally MCTD… to be honest I don’t believe mine is MCTD because I don’t have the 3 conditions that make up MCTD which are SLE, Polymyositis and scleroderma, I think there’s a blood test specific to MCTD called RNP where you have elevated blood levels of this, I’ve never been tested for that as far as I know. I am off the scale ANA +ve anti centromere pattern and Anti Ro positive, I would say I’m more overlap with symptoms of SLE/ limited scleroderma and sjogrens, it’s something I wanted to challenge my rheumy on but he’s now left so whoever I see next I have to go through my whole history again which is exhausting 😖 my rheumy was very good to start with but his care has slipped the last two years and my last clinic letter he didn’t even mention MCTD but said maybe menopause could be responsible for my symptoms, he focused on that because I happened to mentioned trying HRT. I was beyond annoyed but now he’s left, maybe that’s a good thing!

I think whatever connective tissue disease it is treatment is still the same depending on symptoms and bloods but it’s just reassuring to have a diagnosis and one that fits better with what you’re dealing with, it all gets very confusing 😬

Diane 🌸xx

[Susieliz39 in reply to ExtremeDuvetDaze]

thanks for your reply extremeduvetdaze. You certainly have had your fair share of different diagnoses. And yes, it is very confusing! It’s interesting what you say about the three symptoms needed for MCTD, as other than Lupus, I don’t have them either 🤷🏼‍♀️ It doesn’t change what is but it’s reassuring to be able to give a name to all the symptoms. Take care, we’ll keep soldiering on, whether it be MCTD, Lupus or even blue spot syndrome! Sue xx

[ExtremeDuvetDaze in reply to Susieliz39]

It would be interesting to know how your Rheumy explains MCTD too, keep us posted .

Take care and yep we soldier on best we can 🤪

Merry Christmas

Diane💕🎄 xx

[chrisj]

I was initially diagnosed with SLE and went to the rheumatology dep for treatment for that and osteoarthritis.

Later down the line Sjogrens came into the mix and I was referred to the connective tissue dep for a time. A shuffle of patients recently meant I was put back in rheumatology....

I believe Sjogrens is primary now and thats checked out once a year at a dental clinic although I can discuss it in rheumatology as well. Its a bit confusing but they generally keep me informed.

Asthma as well I'm told is part of the autoimmune illness family. I've had that all my life but was never taken to see a gp about it and I just got used to being out of breath. It took an atttack to get me to see a gp to get it under control....lifes challenges xx

[Susieliz39]

Hi Chrisj, thanks for your reply 😊 these conditions are certainly challenging for us! I didn’t realise there was a connective tissues dept in some hospitals. I’m guessing there isn’t in mine, as I’m still under the same consultant in rheumatology. I don’t suppose the definitive diagnosis changes much really. My body isn’t playing ball, no matter what they call it! 🤦🏼‍♀️ I hope you have a relaxing Christmas. Best wishes for the new year x