Anyone with MCTD?

PeridotEyes

Mixed Connective Tissue Disease.

https://www.mayoclinic.com/health/mixed-connective-tissue-disease/DS00675

 

Its rare, but I was hoping to find someone who's TTC or is pregnant with it. I've had it for years but was just diagnosed officially (I had thought I only had Rheumatoid Arthritis). Now, we know its probably the reason I had so many losses and delivered DD 7w early. 

Just hoping to find someone out there. 

ProcessofBecoming

You have found someone! I was given a "possible diagnosis" of MCTD, based on the presence of RNP antibodies in my blood (level is now at 6.3, but the absence of any other antibodies, save for elevated ANA 1:160). Thus far, as I knock wood and everything else around me, I am largely asymptomatic, save for some aches and pains here and there, but I also wondered if my first miscarriage was due to the disease.

I do not take plaquenil or any meds (I am going the natural supplement route, with acupuncture and qi gong thrown in for good measure), and I try to avoid gluten (although with the nausea of being pregnant, the past few weeks have been a big FAIL on that front). I eat mostly organic and hope all this stuff helps.

I'm now 12.5 weeks' pregnant, and have my NT scan tomorrow. I remain excited and terrified of what the outcome of the scan will be, but can only hope that things keep going well. Besides the autoimmune issues, I have Advanced Maternal Age (I'm 40) to contend with, so if I can get this baby here, I know how blessed I will be!

Would love to know more about you and how MCTD is treating you, as well as your pregnancy(ies). I am trying to remain positive and optimistic through this pregnancy, but as you well know, that is easier said than done. I just hope my body cooperates and lets me have a healthy baby!!!

Bookwormyone

I do to!  I was taking Plaquenil pre-pregnancy but stopped when we started TTC.  My rheumatologist said it's ok to take during pregnancy but I chose not to.  I am considered high risk, and have ultrasounds every four weeks.  Starting at 30 weeks I'll have NSTs twice a week and BPP if needed.  I see a perinatologist in addition to the regular OB and also had a fetal echocardiogram. 

So far my pregnancy has been uneventful.  This is my first pregnancy and first baby, so sometimes it's hard to tell if I'm starting to have MCTD symptoms or typical pregnancy issues.  I had carpal tunnel pre-pregnancy which my rheumy says can be related to MCTD, and it's been pretty bad so far this trimester.  I have a lot of fatigue and joint/muscle pain, but again, it's hard to tell what's typical and what isn't. 

Just an FYI, I had my NT scan come back as increased risk for NTDs.  I'm 26, so age wasn't a contributing factor.  I was a wreck for over a week until we could have a level II ultrasound, but the baby looks perfect.  False positives are pretty common with this test whether you have issues or not, so try not to freak out until you know there's a reason to (easier said than done!).  So far my little girl looks perfect.  Even with the false positive I'm still glad we opted to have the testing done.

The perinatologist did say that with autoimmune issues in general you can be more likely to develop pre-e, and IUGR, but the increase isn't huge and he stressed that with close monitoring there's no reason to think I can't have a perfectly healthy baby. 

Good luck to you both! 

angie0000

hi.  my phone is acting up so please excuse the typos. i was diagnosed with mctd 2 years ago. my hubby and i desperately want another child but i am afraid of developing pulmonary hypertension which i know is fatal when pregnant so i am looking for success stories. i am 36 and also onl yearsy have occasional pains now but 2 years ago i had a pretty painful flare. i would love to hear how you two are doing as i am hoping i may still have another child. i was a surrogate in 2006 and delivered a healthy but small baby girl. never even heardof mctd then. my own youngest is 10 and the need to have another baby is huge. good luck ladies.  

Carey07

I have lived with the symptoms for over 11 years...but was just officially diagnosed at the John Hopkin's Lupus Clinic with MCTD, Raynaud's, La+ antibody, MFTHR & antiphospholipid anitbodies.  I am taking Plaquenil 400 mg, baby aspirin, Folbic & a prenantal vitamin daily + Vitamin D weekly.  So far, I have had NO LUCK with TTC!!  It took a while to "conceive" naturally & my 1st pregnancy was an ectopic   We tried a monitored IUI afterward = BFN.  Moved to a new clinic for an IVF cycle = developed OHSS / no fresh transfer.  Frozen embryo transfer #1 (2 day 3 embies) = BFN.  FET #2 (3 day 5 blasts) = Chemical.  Currently, back to IUI's at clinic #1. We have 5 embryos left in storage.  I'm terrified to use/waste them in me, but can't afford a surrogate just yet. I'm only 28 years old & can produce a good number of great quality eggs, but my body has not had any success with implantation in the right spot.  JHU doctors claim MCTD can't cause infertility, my RE disagrees. However, when I approached my RE about intralipids, heparin/lovenox and/or steroids, I was basically shut down.  I am so frustrated.  I haven't really found anyone else with MCTD who is TTC, as most are already pregnant...which is promising.  Good luck to everyone!!! 

Bookwormyone

So sorry you're struggling, Carey07.  I wish you the best of luck with TTC. 

How is everyone else doing?  I think I'm beginning to flare .  My bloodwork looks good so far, LO looks good, but every day I'm waking up in a little bit more pain.  I start NSTs this week and have a regular OB appt. on Friday so we'll see what they say.  Hopefully if I'm going to flare badly it won't happen until after I've delivered.