MCTD vs SLE

[BearAble]

Question: is there any difference in the treatment of MCTD and SLE? Here's why I'm asking...

I visited my GP after developing Raynauds and what I thought was RSI in my hands/wrists early this year. My ANA test came back positive, along with a positive RNP result. My GP referred me to a private rheumatologist, who checked me out and found a few things I hadn't noticed (poor tear production, dilated nail bed capillaries, puffy/swollen fingers, myalgia). He mentioned MCTD and sent me off for some more tests.

During my second appointment with the rheumatologist, we discussed test results and the only potential concern was lung function (heart and kidneys are fine). He then changed the diagnosis to SLE while commenting that a diagnosis of MCTD is controversial. Thing is, when I initially read up on MCTD, the symptoms seemed a perfect fit. SLE seems less of a match as I do not have any rashes/light sensitivity.

I guess if the treatment is the same then it doesn't really matter? I started taking hydroxychloroquine on Monday.

Thanks for reading! Any opinions?

[Hidden]

Hi - I'm not quite sure why your rheum said that "a diagnosis of MCTD is controversial"? If you have the autoantibodies to make this diagnosis then a diagnosis of MCTD would probably help doctors to recognise signs of other connective tissue diseases sooner. I'm not sure that it matters in treatment terms and your rheum is the expert of course. A professor once told me that no one person's Lupus is the same as another's.

My diagnosis sits somewhere between Sjogrens, RA, Scleroderma and Vasculitis presently and I've failed to tolerate four DMARDs to date - I'm five years in and my ANA has only recently shown positive. I'd settle for any diagnosis that would allow me to try more immunosuppressants just now as I fear joint and organ damage. That said, I'm also pretty fearful of further allergic reactions to drugs so being between diagnosis has its merits! Good luck with the hydroxy and take care. Twitchy

[Bronagh2015]

Hi BearAble, I started off with a firm diagnosis of SLE then after a few years when Raynauds, Sjogrens and swollen hands developed my diagnosis became MCTD predominantly SLE. I believe this happens quite a few people and my treatment is the same or similar to others with just SLE. Also my rashes and severe sun sensitivity only developed about 5 years after diagnosis. Hope this is of some help. 🙂 Bronagh

[Paul_Howard Partner LUPUS UK]

Hi BearAble ,

We have a factsheet called, ' LUPUS and Mixed Connective Tissue Disease' which includes information about treatment - it may be of interest to you. You can view and download it from our website at lupusuk.org.uk/wp-content/u...

It is important to bear in mind that lupus is a very varied condition that doesn't affect everybody the same. Not all people with lupus will have rashes and light sensitivity. There is also potential that these symptoms could develop at a later time.

If you would like more information about lupus we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

[jackaboo]

I have sle without any rashes or sun sensitivity and have been diagnosed nearly 10 years. Hope you get some answers soon and the hydroxy helps xx

[Oliveoi]

See, this is exactly why I’m confused. When looking at everybody else’s symptoms compared to mines I am showing more SLE than UCTD. My skin on my face, too embarrassed to ever go out. Difficulty driving on days when the sun is out because it affects my eyes so bad and then I end up itching from the sun and end up with tiny red head rashes that look like bites but are not then under my skin I end up with dark blue spots that look like bruises. The doctor thinks I’ve got lichens Planus. It’s lots of things going on with me for over 40years and because I got angry with Gp to test me for Lupus that eventually it came back positive. All the comparisons I’ve seen with Lupus symptoms that other people with Lupus have I have also yet my diagnosis is UCTD. I’ve had my gallbladder removed. While I’m having my pancreas checked because I have a lump that needs to be monitored, same cysts found in my breasts. Fatty lumps under my skin, as well as other obvious symptoms of lupus, Plus UCTD is not classed the same as Lupus or MCTD because with UCTD no one cares because we’re a mess that cannot be contained according to honest doctors opinions.

So yes, very frustrated with my diagnosis. 😒