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Autoimmune - Advice?
So my therapist recently suggested that I (23f) attempt to connect with fellow people dealing with chronic illness (particularly in the realm of autoimmune diseases/disorders) because of the frustration that I'm currently dealing with pertaining to my symptoms, potential diagnoses, etc.
Anyway - here's the situation. After almost four years of experiencing a sudden onset of symptoms - such as tachycardia, dyspnea on exertion/feeling like I can't get a deep enough breath, unexplained weight gain, excessive sweating/inability to regulate temperature, more recently some upper back pain and cracking joints, general fatigue, etc. - I'm finally in a place where I have a decent enough job and health insurance that I was able to get a rheumatology referral.
I went to the rheumatologist, and, after speaking with her for all of ten minutes, she told me she didn't have a very high suspicion of any autoimmune disorders. And as the blood tests that we did that day started coming back normal one at a time, that initially seemed like a fair assessment. Totally in-range thyroid, rheumatoid factor, CMP (except for ever-so-slightly low Carbon Dioxide, but I was told not to worry about that since it was barely out of range), C Reactive Protein, Sed Rate, and CBC+PLT+DIFF. But then my AntiCCP came back through the roof. For reference, a negative AntiCCP would be less than 20 units, and a "strong positive" would be anything greater than 59 or so. Mine was 133. In short, we're now looking at Rheumatoid Arthritis.
Honestly, at first, I was actually rather relieved that we at least had a lead. I'd been diagnosed with dysautonomia and IST at my cardiologist a little over a year ago, and my pulmonologist and I discovered about nine months ago that my windpipe is very narrow; but we couldn't really determine a reason why for any of these things. So I thought that maybe RA could be an explanation. But now I have all my specialists telling me that they don't really know if RA would be causing my specific symptoms or not, since RA is more about joint inflammation (from my current understanding).
In terms of testing I've already done, all my EKGs/ECGs always come back clear. My latest exercise stress test was technically fine (even though I felt like I was dying the whole time) - I just had diminished exercise capacity, increased wall motion, and my left ventricular wall segments showed thickening. A chest x-ray I had a while ago showed clear lungs. I just recently did x-rays of my hands and wrists, and there's no joint erosion so far. I did a PFT with pulmonology last year, which is how we found out about my airway being narrow; and I just did a repeat PFT that I'm currently waiting on results for. I'm also waiting on results for a sleep apnea study (if this is relevant, my left leg has been Charlie-horsing quite frequently lately, especially in the middle of the night). I've had a tilt table test done and it was normal, so this probably isn't POTS.
Also, I don't know if this is important, but I run out of breath/sweat very easily even when doing mundane tasks like dishes. Going up stairs is especially difficult, even just a single flight. Movement makes me feel overheated, even in the winter. I'm currently on a beta blocker, but my heart rate still gets higher than I would like when I'm moving at all.
Since I'm already in the thick of medical things, I want to ask my rheumatologist for some follow-up tests to rule out any other possible autoimmune disorders, because I want to make sure we're covering all our bases, since the ways in which my body is malfunctioning on a daily basis still don't make total sense to me. I've been doing some research and thought about asking about myositis, but I'm just not completely confident in advocating for myself at this point, since I feel like I still don't really know anything. I'm also wondering if y'all have any other suggestions for other possible problems I could pursue asking about? I'm just confused and stressed out and a little sad.
If you stayed this far - thanks for listening.
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So sorry for all you are going through. Both my daughter and I had symptoms very similar to yours and she was 27 at time of her most severe symptoms. The Rheumatologist ran all the classic tests and we both tested positive for an “early Sjogren’s test.” Here is more info about what we learned:
“Your Sjogren's panel result came back with an elevated level of carbon anhydrase VI antibody.
As we discussed, American College of Rheumatology has not yet incorporated this panel /antibody into making a definitive diagnosis of Sjogren's. But it's notable to find this antibody with your dryness and multiple symptoms.”
In summary, we both ended up being diagnosed with Sjogren’s and multiple autoimmune diseases and are undergoing treatment now with hydroxychoriquin. I also have developed Rheumatoid arthritis and selective primary immunodeficiency. I get IVIG for that every month.
The hydroxychloriquin meds really helped both of us. We still flare and go through tough disease periods, but are out of bed and have some quality of life back. Sjogren’s and dysautonomia foundation information helped us a lot, and the amazing Drs at Mayo! Praying for you!
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4 ReactionsHas anyone considered Pulmonary Arterial Hypertension?
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1 ReactionI don't think so! I just came back from the rheumatologist this morning and I have an appointment with my pulmonologist this afternoon, so maybe I should bring that up with her.
Has anyone who has PMR had drastic hair loss thanks to prednisone… Thank you
I have had PMR and hair loss but not due to pred. It was due to being very ill from a Crohn's flair resulting in appendicitis. A dermatologist was able to diagnose it. He prescribed 10000 mcg of biotin daily. That did the trick but it was slow. The PMR came sometime after the flair and wasn't involved. I recommend seeing a dermatologist.
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1 ReactionI've been thinking about this for a long time and seems like a good time to bring it up. Try to remind yourself that just a diagnosis and a name of a disease does not make your condition an outside invader that your body has to fight. In a sense, we are all doing it to ourselves. So it can be looked at more "holistically" if you will. Just a thought to keep in the back of your head. It's not about "fault" but about self-understanding.
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2 Reactions06/01/2025 Hi guys - thank you for all your support, validation, and suggestions! All of the above has been extremely helpful and uplifting as I've been navigating this.
I followed up with my rheumatologist and my pulmonologist recently. My pulmonologist has ordered a chest CT for me since my latest breath test came back a little better than my original one but still not fantastic (and it looks like my airway is still pretty narrow). I'll be getting that done on Tuesday morning, so I'll keep y'all posted.
My rheumatologist is currently dismissing my high anti-CCP as a "red herring" because a trial of prednisone didn't help me (it gave me a little more energy but didn't diminish my pain, DOE, or the like; and it also gave me a really bad cough for some reason). I don't feel comfortable with dismissing the anti-CCP or a possible RA diagnosis, especially since I just got another high inflammatory marker back (Complement C3) - which, from my understanding, indicates that my body is actively trying to fight something. So I'm going to get a second opinion in July.
Most my other tests have come back normal so far, including SSA, SSB, ANA, Complement C4, anti double-stranded DNA, etc. I think we can safely rule out Sjögren's and lupus at this point.
My CPK also came back normal, but I asked for a full myomarker panel anyway just to be on the safe side (especially since my Rheumatoid Factor came back normal but then my anti-CCP was through the roof, so I don't want to rule anything out without the more detailed/specific testing first). Those results might be another week or two.
My rheumatologist thinks it's fibromyalgia. I don't disagree that that could be a factor, but I also don't necessarily agree that that's "all." If anyone has thoughts, feel free to let me know! I'll update again once my chest CT and myomarker panel are back.
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1 ReactionYou’re welcome. Wow I’m so sorry for what you are going thru. I have MCTD wt overlap scelderma. Was diagnosed in January. I’m just now starting to feel it. Having my first flare up. I wish I had something knowledgeable to tell you. I’m just learning about it. Good luck us!!!!
I will tell you this be patient.
Document everything going on with your body. I have known since a very young age I had autoimmune problems. I took IVIG from age 10-18.
After, all these years at age 63 tested positive for lupus, Sjogrens, and Hashimotos. It is not an easy simple road believe me. My 40 year old mad me start taking pictures of my face. I had the lupus rash tested negative. This anarchy tested positive. They rely on labs, X-rays and so forth but in my experience listening is a problem and they focus too much on labs. Lupus never affects each patient the same way. The doctors were looking for the typical textbook description.
I am glad you are getting a 2nd opinion. My journey with rheumatologists has taught me that they have to look at really "fuzzy" pictures of our health and these can be interpreted many ways. I was with my 1st rheummy 4 years with strange labs and no diagnosis until I got a 2nd opinion. It was PMR (which I privately agreed with) so I went with him. But soon I realized that he wasn't looking very hard for anthing else, so I waited to my treatment was winding down and found the one who diagnosed Sjogren's plus Small Fiber Neuropathy (with help from a good neurologist). I am now being followed for my Sjogren's by the neurologist as he has become an expert in Sjogren's and my rheummy stopped seeing me due to an insurance chage. I decided to stay with a doc I could trust who was trying to stay current rather than a new rheummy I know nothing about. It's always a crap shoot, isn't it. From what I can see, you are tunneling through it with your head above water and that is inspirational. Go and do, I say.