hi. Am I alone in this world?

[andreiab]

looking for a community that represents me. Mixed connective tissue disease?

[OldTed60]

Firstly happy new year to you and secondly - no you’re far from alone. I’m sure you’ll get plenty of replies here but you may also want to join the SRUK and Myositis UK communities so as to have all bases covered. I mainly use the SRUK (Scleroderma & Raynauds UK) community because I have Systemic Sclerosis/ Scleroderma. However I was initiatally misdiagnosed with RA, then (primary) Sjogren’s and then MCTD/ Overlap CTD. There seem to be quite a few here and on SRUK who are diagnosed with either MCTD or UCTD so you should feel at home on either or both/ all these communities. You can follow as many groups on here as you want (and unfollow) as feels right. But SRUK is also for those who have Raynaud's - which I see from your profile you do have too. Also many of us with Systemic Sclerosis have severe GI involvement so you may get support and advice about your gastritis as well there.

[andreiab in reply to OldTed60]

Hi. Wasn’t expecting a reply tbh. Happy new year to you too. Thank you, this really helps.

[OldTed60 in reply to andreiab]

You’re most welcome. I had planned a good long lie in after seeing in the new year but woke early and couldn’t get back to sleep. I’m sure you’ll get plenty more replies here but as it’s New Year’s Day they might come a little later! 😊

[Jrob14]

my husband very recently diagnosed with MCTD it’s been a very difficult stressful journey-hoping for treatment now to help his numerous symptoms n slow down damage to organs. Hope you have good drs n get answers soon

[Krock1]

I was diagnosed with MCTD in 2016 and found this site shortly after that. The posts have been very helpful over the years. The people here are very supportive and I wish you well in your journey.

[Pastel63]

Hello,

I wanted to share that I also suffer from mixed connective tissue disease with specific antibodies (anti-SM/RNP, speckled pattern). This condition is also known as Sharp’s syndrome, and it’s a rare disease. I joined this lupus-oriented forum because it’s really difficult to find one specifically dedicated to Sharp’s syndrome. I'm french.

I completely understand the challenges with treatment. We are often given protocols designed for other diseases, such as rheumatoid arthritis, but they don’t always work well. Personally, I take cortisone, Plaquenil, and Leflunomide (ARAVA), but I struggle with this combination. I’m somewhat corticosteroid-dependent: cortisone works very well for me, but it comes with significant side effects. Doctors are constantly trying to reduce the dose, which often leads to flare-ups in my case.

I also feel there’s a lack of understanding in follow-ups, possibly because this condition isn’t well-known. For example, I had a hospital stay due to chest pain and breathing difficulties. They discovered a pulmonary nodule, likely inflammatory. Despite having high CRP levels (indicating inflammation), my physical symptoms don’t align with the classic visible signs of inflammation, such as those seen in rheumatoid arthritis. This often feels underestimated. My pain is very real—whether in my hands, shoulders, or joints—but it’s less visibly dramatic, which may explain why my treatment isn’t adjusted much.

I feel that my current treatment isn’t well-suited to my condition, but I can’t manage without cortisone. I hope you’ll find support and answers on this forum. You’re definitely not alone.

Wishing you all the best for the new year!

[YT02]

Happy New Year.After a lot of searching, it is great to see your message and replies. I too have MCTD and would love to join a MCTD community but not sure how to do it as a new member and this is my first message.

[Halfwayuphill]

Hello andrelab and happy new year.

In can understand your confusion as to which group MCTD falls into and why doesn’t it have a group of its own. The problem is it’s a bit of a troublesome diagnosis as many uk rheumatologists prefer the term UCTD or RNP positive UCTD and others use MCTD. The most important thing is regardless of what the name of the illness is you are seen regularly and are treated seriously. I have had this disease for 20 years now and have been seen every year. In the first few years it was every three months then six months. My symptoms have always been more Scleroderma. I had sudden onset of Raynaud’s, problems swallowing, talking, nausea, debilitating migraines and of course fatigue and weakness. Over the years certain things are better including the choking, properly due to taking PPI’s and my gut problems much worse. The hallmark of MCTD are high levels of RNP antibody course speckled. Those diagnosed with lupus or scleroderma can be RNP positive too but with lower levels and accompanied by other antibodies.

OldTed’s suggestion of following the forums for Scleroderma and myositis are good and also I find the lupus one too. SRUK are very helpful as well.

Good luck on your journey and let us know how you get on

[Bee_E]

Hi Andreiab,

Happy New Year!

You are definitely not alone. I was diagnosed with SLE in 2015 after a long, painful and stressful journey. I was prescribed Mycophenolate, Hydroxychloroquine and Prednisolone. I have managed to reduce the prednisolone to a low dose of hydrocortisone which I am trying to reduce further but it is a slow, and again often painful process.

This forum has been really helpful and supportive during this journey.

Stay strong 💪🏻

Xx

[CecilyParsley]

Hi andreiab no you are most certainly not alone. Many of us here, myself included were diagnosed with UCTD and / or MCTD prior to being diagnosed with Lupus or other Autoimmune Conditions so you will find someone who has been or is currently at the same stage as you are. This is a very supportive group and someone will always try to help xx

[Potatoheat]

Hello. No you are not alone. My original diagnosis when I had Reynauds and frozen shoulders was MCTD which settled with hydroxychloriquine and Voltarol!! This was 30 years ago. Was fine for 10 years then flared up as pericarditis, so now my problems are lung, heart and digestive involvement plus other annoying niggles. I don't have the severe pain and fatigue of Lupus which they say I now have. But as my GP once said, everyone is different with this disease. I now take azathioprine and prednisone low dose, with BP meds and beta blocker. So, don't think you are alone. Most of us started off with confusion including the Drs. I'm sure they will get you pinpointed soon and on the correct meds. Stay in touch ❤️

[RxMe]

Seven years ago, my PCP looked at my symptoms & picked up on an elevated ANA & anti-Smith/RNP (speckled pattern) and suggested it might be MCTD. Sent me packing to a rheumatologist who added livedo reticularis to the symptoms, but changed the diagnosis to UCTD as the labs she ran did not confirm MCTD. A second rheumatologist thought I might have lupus or RA as I developed high anti-CCPs two years in a row. A third rheumatologist dismissed MCTD since I never had the “sausage” fingers, so here I am: UCTD, kind of betwixt and between.

The disease has retreated over the years, helped by hydroxychloroquine and even a months-long course of LDN (goodbye, livedo!). Have not been able to banish the dry eyes, dry mouth, unfortunately. Guess whatI am getting at is that things can change with any autoimmune diagnosis, and sometimes maybe for the better. 🤞