Link to copy & paste- in case you are interested :)

https://lupusnewstoday.com/2018/01/15/mixed-connective-tissue-disease-relatively-stable-milder-than-systemic-lupus-erythematosus-systemic-sclerosis/

This is good news for most of us! Thanks!
Mary Ann

Mary Ann - I think it is good news. Maybe takes away a little bit of the unknown.

I fear a change in direction with my health, and if I knew I would stay on the same path – that may be helpful.

I understand treatments are usually the same, but this study gives me peace of mind and I’ll take anything I can get at this point!

Especially since what I’ve previously read is that many doctors think MCTD is just the early stages of scleroderma. Anything that goes against that thought – is great news !!

I think this study shows what many of us have seen after years on this site. Those with lung involvement dont do as well. I personally see the remissions as they described in those without lung involvement. As times, My disease is gone! At other times, I feel awful, tired, joint and muscle pain, muscle weakness, dry mouth, red eyes, low white count........ In and out of remission. It almost seems like 2 different illnesses among us. Again, thanks for posting this!
Mary Ann

:))

Allie, thanks SO much for posting this! This is some of the first new information that's been published on MCTD that both seems from a credible source-- not an A-list, it ain't in Rheumatology, but it it's peer-reviewed, it isn't crap churned out by some PR firm -- and also that actually listed some useful information. Way to go! MAJOR score.

Okay, here's Katalyzt's take on this: First of all, you gotta look at the research the article is based on, which is here:

https://arthritis-research.biomedcentral.com/articles/10.1186/s13075-017-1494-7

There, we can see that this article is from Arthritis Research and Therapy and is published by an outfit called BMC. BMC seems to be one of these new, open-source publishing outfits-- they do a peer review, but they promise to do it "quickly" which is a yellow flag, but not an orange or red one. There are some new online outfits that would "peer review" a ham sandwich, but this doesn't seem to be one of them. BMC seems to be set up to provide alternatives to mainstream journals that make it almost impossible to publish, and BMC does not seem to be influenced by big money players-- they don't seem like they're shilling for anything.

Click on some of the different tabs... you can see that the cohort for this study was a decent size, but note that they're all in Norway, which both has one of the best health care systems in the world and also, Norwegians are just generally more healthy. (The US is not even in the top 13, obviously.) So the corresponding numbers here would be worse.

Just from poking around a bit, yes, Allie-- this seems to contradict the idea that MCTD is just an early form of slceroderma. There is a bit of research, though I think it's older stuff, that kind of suggests that, and that has never been what we've seen here. We've only had a small group with sclero-type symptoms, though some of us get a few lung changes that are vaguely sclerotic and do not always progress.

But to see the most exciting numbers, go down and click the tab for "results" and look at some of the charts. Ooh, ooh, ooh, there are a lot of people who go into remission, aren't there? Lots and lots of those (generally healthy) Norwegians are doing just fine. Even if the numbers in the US are a little worse, it's still great news!

But here's the most interesting part for me, buried in the results section, that is not even discussed: Look at the percentages for remission, extended remission, etc., on treatment vs. off treatment, and how those categories are defined.

By "on therapy," they mean heavy meds, like methotrexate and prednisone, and "off therapy" includes plaquenil and NSAIDs. I don't know why they set it up that way, but it's interesting, because the group that did NOT take strong meds like methotrexate IS NEARLY TWICE AS LIKELY TO GO INTO REMISSION as the group that does take heavy meds. The group that's less medicated less does better-- and a LOT better.

The authors don't say anything about this, and one can see why: We don't know if the people who took stronger, more toxic drugs like methotrexate did not go into remission as easily because their underlying disease was more serious, and they would never have gone into remission anyway, or whether the methotrexate provided only sporadic, short-term relief and may have actually made the patients symptoms worse over time (due to toxicity.)

But I think these results do reflect the basic idea that it's probably not a good idea to go to strong DMARDs (that's disease-modifying-antirheumatic- drugs) unless you have very serious symptoms. And it does seem like prescribing habits are changing in this general direction. It seems to me that back in 2010 or whatever, we'd hear about more patients who were prescribed methotrexate very early on in their illness, when they didn't even have lung involvement. And we haven't been seeing that as much here over the past five years or so, so it wouldn't surprise me if outcomes are better now than for people diagnosed 5 or 10 years ago.

Thanks so much! That was awesome!

I love your insight! I’m just learning how to interpret all the info I find online. This article seemed legit. I did also find the research and tried to understand it as best as I could. And I also thought it curious about the correlation between remission and medication. I’m guessing, as well, it’s because those who didn’t go on heavy meds probably had less symptoms to begin with and therefore more likely to go into remission?

I have my second rheumatology appointment next week at Mayo Clinic. Since my last appt, I’ve had lots of new symptoms pop up. Major muscle weakness & pain, joint pain as well. Also hair thinning (maybe due to stress!) and the weirdest is hoarse voice. Also swollen fingers & carpal tunnel.

So I’m curious if my rheumatologist will put me on medication finally. I had no organ involvement six months ago but that may have changed. I wonder if he’s waiting for organ involvement prior to putting me on heavy meds?

My first symptom was Raynauds, so I’m always nervous about a Scleroderma diagnosis:((

Yes I am agree that put on medication before organ involvement six months ago but that may have changed. if waiting for organ involvement prior maybe extended patients lifespan.
The internet says 85% of MCTD patients involved lungs. That's terrible and it prognosis is pretty scary. Seemed worse than Lupus or Sjogren's.
Xiao

My rheumatologist at Mayo says MCTD is less severe then if I was specifically diagnosed with scleroderma, lupus or polymyositis as MCTD usually is a bit milder. Who knows if he’s right?? With the muscle involvement I’ve had, he was pretty concerned that I was leaning very much towards polymyositis and tested me for about 17 different myositis specific and overlap antibodies. He said if I had any myositis specific antibodies that my treatment plan was gonna be very different. The only antibody that popped up was myositis RNP (thank goodness) . I cannot get away from that RNP antibody:(

He says that’s typical for MCTD and he’s going to give me a bit more time to see if my muscle involvement calms down before starting me on an immune suppressant. So I’m still dodging CellCept :)! But more blood work next week...

MCTD may be worse then Sjogren’s, IMO.