Mixed Connective Tissue Disease

[nancarolyn]

Does anyone have MCTD?

[Ianrussell69]

Hi yes I was originally told I had lupus but after a yr they changed the diagnosis to mctd aparantly the Meds did not change hydroxy and methatrexate with folic acid plus pain Meds there are plenty of people here who know far more about it than me and will help you

[nancarolyn in reply to Ianrussell69]

You have help already. Thank you for sharing that. Nan

[Ianrussell69]

Yes I was lucky I went to a dermatologist and he refured me to the rumi department I’ve been going to the rumi for about 21/2 yr although it’s not a quick diagnosis it can take along time although they were quick to put me on hydroxy

[Mean-time]

Yes, I was diagnosed in 2003. It can be pretty lethal as it encompasses many diseases. I have skin and joint problems, have acquired (in 2008) interstitial pulmonary fibrosis, scleroderma, dermatamyositis, raynauds, rheumatoid arthritis and now sweets syndrome just recently. I’m functioning well, on 2 liters of oxygen 24/7 since 2015, now on 3 liters. The good thing for me is that I’m now 80 years old. In 1996 I had a heart problem n ended up in ICU followed up by 7 stents in my right coronary artery. With meds, Lipitor, mycophenolate, on n off of prednisone for flare ups. I am functioning well, am strong in mind n body....I don’t know your age, but feel getting all this later in life is easier, as all my children were married n on their own. I’ll be praying for you. Make sure you have a good rheumatologist, have your heart n lungs checked yearly n God Bless You Nanno

[nancarolyn in reply to Mean-time]

Thank you for sharing with me. It has really helped. I have much the same. My biggest problem is trying to deal with pain and weakness. I give in to the sofa more than I want to. I am 68 and my children do give me motivation, when needed, but only to a point. I ask for help after cooking for Christmas and Thanksgiving. And that is progress for me. I always said a prayer of thanks when younger and could walk across a field to watch a soccer game for one of my kids. It was hard then, but I sucked it up. Now my health is worse and harder, but I am not ready to give up yet. My social life is doctor visits and sometimes want to cancel, but try to make myself go. I do have a strong faith and trust in God. You are inspiring and thank you for your prayers. I have been putting off seeing the vascular doctor and you have given me the motivation to make the appointment. Take care and God Bless You. Nan

[Blizlee]

Yes! I was diagnosed with mctd 5 years ago. Was put on hydroxychloroquine which has helped hugely. After about a year they changed diagnosis to lupus as I had a red rash over the bridge of my nose but treatment didn't change at all. From what I can gather, lupus and mctd are very similar with similar symptoms and treatment. Xxx

[nancarolyn in reply to Blizlee]

Thank you for letting me know I am not alone with this. lately with more problems it can get overwhelming. Take care and God bless you.

[Paul_Howard Partner LUPUS UK]

Hi nancarolyn ,

If you would like any information about MCTD, we have a factsheet which you can read/download here - lupusuk.org.uk/wp-content/u...

[bones-bones]

Yes I apparently have this as well as Sjogrens. I was given Hydroxychloroquine when I was first diagnosed with SS and then about 3 years ago Mycophenolate was added. I have had to stop taking Myco now for about three months as I am on Chemo. For the first few weeks it wasn't a problem at all but I now have the rheumatic pains which I had before I started taking it. I'll just have to take painkillers for now.

This too shall pass ......I hope ! I am 74 and getting a bit too old for this !

Mycophenolate made all the difference to me.

[nancarolyn in reply to bones-bones]

Thank you bones-bones. I appreciate the information and will look into mycophenolate. Good luck to you and God bless you.

[Lizard28]

Yes I have been diagnosed with MCTD, altho it has taken about 6 years to get there. It's a difficult one to diagnose as it manifests itself in different parts of your body, it's like an overlap of several other autoimmune diseases.

[zzcat]

Yes, I too was given this diagnosis, about 20 years ago. The hydroxy. Worked so well that I asked to go off of it. Big mistake. It all came back with a vengeance and I have never been in remission again.

This bucket of diseases as I call it can have many faces, take it seriously. Mine just happens to be lupus, RA, anti phospholipid, ranauds, and my latest not so favorite cerebral vasculitis.

Please, do take care and take this diagnosis seriously.

[nancarolyn in reply to zzcat]

Thank you. Been dealing with this most of my life. You have given me support so I do not put off making doctor appointments or cancel, which I have done. God Bless You.

[Maureenpearl]

I have been diagnosed with MCTD in 2016 which has damaged my lungs (Pulmonary Fibrosis) I now use ambulatory oxygen and unless i'm sleeping or sitting still I have to use the oxygen at 6 litres per minute since 2013