Recently I switched to a new rheumatologist affiliated with a cardio-rheumatology program (due to arrhythmia, cholesterol and valve issues). He ran a new blood panel on me, with a surprising result: My anti-CCP levels (tested twice before at almost 200) were now negative!
Several years ago, I had a moderately positive ANA (1:320) and a positive RNP of 1.4, and my primary care doc thought it might be MCTD. However, it has only been with this last blood draw that this finding reappeared, with a barely positive ANA (1:40) and a slightly higher RNP (1.7). As the current rheumatologist found no elevated inflammatory markers and no visible joint swelling, he believes I fall more under the category of UCTD than RA or MCTD.
So, not sure where I belong at this point. It’s important to me in that I’m wondering if the underlying autoimmune issues have contributed to my heart problems (and minor lung scarring).
Anyone out there in a similar quandary?
How do each of these diseases (RA, MCTD and UCTD) differ (or not) in their effect on the heart?
What to believe....and whom?
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RxMe
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Hi Rx. You sound like MCTD to me esp with lung scarring and persistently positive RNA. RA usually presents with joint pain with swelling - knees and fingers among many other joints. So doesn’t sound like RA.
Ive always thought the biggest difference between UCTD and MCTD is that UCTD has negative antibody tests which yours obviously doesn’t. And with ongoing symptoms, I’d still favor MCTD.
I hate when new physicians try to change things all around that have been established for years. There is usually a reason doctors label or treat patients a certain way and it’s based on experience and knowing your patient. I had to learn this the hard way and changed things around on a few of my patients when I first started practicing. Not a good idea as I found out. I’d give push back on UCTD diagnosis because treatment for UCTD and MCTD is different. There are things you can get approved for MCTD but probably not UCTD. If I’m wrong on this, please correct me.
This has been a whacky journey for me, for sure. I do not share your medical background, but your opinion does seem to make the most sense. Unfortunately, I have not had much luck in pushing back on medical opinion in general, but maybe I can convince this fellow. I’m fairly certain he did not review all my medical history before our first appointment, and never mentioned the lung issue at all.
Thank you for pointing that there is a different treatment protocol for MCTD vs. UCTD. I suspected as much! And it may make a difference in my treatment plan.
It sounds like you learned the hard way how best to implement treatment for your patients. Your patients are indeed blessed to have a physician so willing to work with them, and not necessarily dictate what “should” be!
I’m no board certified rheumatologist so take what I say with a grain of salt. Physicians hate being told their business. We like it when patients are more inquisitive than demanding. Then it lets us all travel at a leisurely pace to the conclusion of a diagnosis or treatment plan. Unfortunately, CTDs don’t really afford us much time to figure things out. They just hit us like a ton of bricks.
Maybe what I would do is take a list of questions you have for him. Prioritize your 3 most worrisome. I’d ask him:
What’s the difference between UCTD and MCTD? Follow up with if I have or had positive antibodies, can I still have UCTD?
What treatments are available for MCTD vs UCTD? I can tell you there is limited treatment options for UCTD.
If that doesn’t get him there then ask what would be needed (in his opinion) to garner a MCTD diagnosis? So if he says lung involvement, you got him hook, line and sinker.
Let him fall into his own trap. Maybe a little mind gamish.... but it happens the other way around much too often.
I bet if your went through these questions with him, he may have a light bulb go off. Then it seems like it was his decision to diagnose you with MCTD. Doctors value autonomy so when we (as in patients) demand things or insist on certain diagnosis/treatment, it will rub docs the wrong way. Doc egos are middle of the road to hugely inflated, which sometimes makes us write people off who think they know better. Esp since we study to be doctor for like 6-10+ years (here in the US at least). Don’t let them intimidate you. We are all fallible human beings who deserve respect. Doctors aren’t perfect even if they act like it. And younger ones are harder to budge because they are fresh off the assembly line.
Keep us up to date or if you get anywhere or get a definite diagnosis. xx
Will do...and excellent questions! At the very least, they may get him to possibly entertain another way of looking at the symptoms. Thanks so very much!🌷
UPDATE: Well, I tried....but it's like that old saying: "Meet the new boss, same as the old boss!"
The rheumatologist was pretty dismissive about an MCTD diagnosis--my lab results were too low, no "sausage fingers", and plenty of "normal" people are walking around with positive labs that mean nothing! (So why do rheumatologists even bother? And why are low/borderline positive antibodies reported at all?) And he completely discounted the lung scarring. So we never even got to how treatment for MCTD might differ (my bad...I should have pressed on!)
He did up my hydroxy prescription, even though I had told him I had been on an even HIGHER dose with no real diminishment of symptoms. He seemed not to have a genuine handle on my history, stating that I had several positive RF antibodies in the past--not true! (Only the anti-CCP). So methinks this guy was just dialing it in.
🤕
As a further slight, he said I probably did not need to be in a cardio-rheum program since my inflammation levels were coming out normal. But he could not explain to my satisfaction as to why I still had symptoms. ( My arrhythmias, heart valve problems and high LDL were "a separate issue." Hmmm....)
Uuuuuuugh Rx. I don’t know if you can switch providers or not. This guy seems like a total jerk. If you’re anti-CCP has been positive multiple times that does mean something and your RNP is positive which certainly helps with diagnosis. I say go on hydroxychloroquine initially because they’d probably start you on that regardless the diagnosis. Give it some time. I don’t know how long you tried it before but you have to give it 6 months at least IMO. Go see cardiology and hopefully they do an echo if you haven’t had one done recently.
I’m so sorry you were dismissed. It’s an awful feeling. Hugs. ❤️xx
I concur with your diagnosis: He is something of a jerk!
I have been on hydroxy consistently for over 3 years, and I suppose it has helped...but not too hopeful that increasing the dose (again) will provide any meaningful change.
Guess it can't hurt....
At this point, I'm doctored-out. Been radiated till I sparkle at night, and catheter ablated up the wazoo. Don't have to see this guy again for 3 or 4 months, so better to take my time and scope out if there is someone more in tune with a patient's needs!
Thanks, Jmiller623, for your validation, and gosh, just for being there!
If it provides any consolation, I did find a difference between 200 and 300 mg with regard to symptom control. Been on it 2 years now.
Hope you get some rest and relaxation. Always happy to support my fellow CTDers. Hang in there and just keep pushing health permitting. Night night (over here). 😴
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