MDA5 positive

[Jrob14]

hi my husband has very recently been diagnosed with mixed CTD, with a lot of positive antibodies, one of which is MDA5. When I have read up on this antibody it has an association with interstitial lung disease (my husband has shortness of breath) and has a very poor prognosis especially in the first 6 months of diagnosis, however my husband is slowly improving after an extremely severe first flare up.

has anybody else been diagnosed with this antibody and has any information to share. Thanks so much

[OldTed60]

Hello. I think I replied to a previous post of yours here. I’m sorry that your husband has MCTD with the likely inclusion of lung involvement. Have you posted on the SRUK or Myositis UK groups with this question yet I wonder? Dermatomyositis and MCTD often fit more under these HealthUnlocked communities where others with same or similar can reassure you that early diagnoses and treatments can make a big difference. I carry just one Scleroderma/ Myositis antibody with a poor prognosis too but am doing well on Mycophenolate and Rituximab. So far I don’t have lung or cardiac involvement although I did prior to starting treatment 5 years ago. I was told by a rheumatologist that overlap CTDs have a better prognosis because carrying more antibodies tends to make the outlook better than carrying just one. I’m glad your husband seems to be recovering after his initial flare up. It sounds like he has a good rheumatologist so will hopefully do well now he’s diagnosed and treated.

[Jrob14 in reply to OldTed60]

thanks for all your support. This is so overwhelming and frightening

[OldTed60 in reply to Jrob14]

Is your husband as scared and overwhelmed as you are about him or do you maybe think it’s worse for you because it’s happening to someone you love and you can’t do more than read up and try to support him?

As far as I’m aware my husband isn’t particularly worried about me and doesn’t read about life expectancy of Systemic Sclerosis (which is worse than MCTD I believe) or even know the name of my rare scleroderma antibody (poor prognosis) so he doesn’t seem to get overly alarmed for me as a result. But then I’ve always had health problems and am probably fitter now than I was prior to diagnosis - which took 12 years from onset with plenty of misdiagnoses along the way. Even when it all started for me in 2011 with sudden onset of inflammatory arthritis and unintended weightloss, he didn’t read up or worry about me unduly - at least as far as I’m aware. I do l the reading and he does the care and emotional support in our case.

I did look up MDA5 because it was familiar to me but I couldn’t place it. And I could better grasp your anxieties until I read further on that it’s the first six months that are key and from the sounds of it your husband didn’t have years living with symptoms undiagnosed and nor is it a stand alone antibody for him? So I think it’s great that you’re learning up for support. However I’d really try not to focus on one antibody when he carries several and try to focus on the fact that “mixed” can have a better outlook and doesn’t have to be a doom laden diagnosis. My old Ophthamologist’s wife had MCTD and, following diagnosis decades ago, lived a very full life as her husband’s receptionist. I haven’t kept in touch with them since they retired and we relocated. But I did hear from a mutual friend that they are both now enjoying grandchildren and she’s pursuing her gardening despite her severe Raynaud’s. So please try to avoid reading anything that isn’t peer reviewed and instead consider joining the Myositis community here for support xx

[Jrob14 in reply to OldTed60]

wow thank you so much for your reply, it really touched me thst you took the time to write such supportive words, and I really hope you continue to experience better health now than before diagnosis.

No my husband is not unduly concerned about his diagnosis-he listens to drs and just ‘gets on with it’ however I do think he believes he’s going to get fully better once tablets start to work. Though drs do tell him it’s for life.

Think I over research due to being a nurse and wanting to know outcomes with certainty, but obv this disease is not like that

Thanks again your kind words have reduced me from being a quivering wreck

[OldTed60 in reply to Jrob14]

Aww I’m so glad if you feel calmer now. I understand about having been a nurse and I think it is often harder for the partner if they are the ones inclined to research more. Luckily for me my husband chooses to be an ostrich about my condition!

I see you’ve just joined the other communities as I suggested. Both groups can take longer for people to respond as represent much rarer diseases than Lupus. But hopefully you’ll get good replies over the coming days. Mycophenolate was a game changer for me when I started it 5 years ago and now Rituximab is too because my scleroderma gut means I don’t absorb oral meds efficiently. It was the years when I was undiagnosed and untreated that have caused some irreversible damage. I feel sure your husband will do well with diagnosis and treatment. I wish you both all the best. Hugs, OT60

[Jrob14 in reply to OldTed60]

Thanks so much and best of health to you too xx