Yesterday had my first in-person visit with my rheumatologist in a year and a half. I handed him a 3- page synopsis of all my joint and related issues (only because I would kick myself later for having forgotten certain points!), and had an alarming number of vials of blood drawn. Most of the lab results are in, automatically generated.
Over the past 4+ years, I have had confusing lab results, ranging from possible MCTD (2 positive ANAs, speckled, with +anti-RNP), to 2 highly positive anti-CCP (no RF). But apparently, I did not fit into any one neat box, so diagnosis has been UCTD. So far, this latest round of labs is looking “normal”—no raised inflammatory markers, a mildly positive ANA (speckled-again!) Yet still plagued by joint pain, stiffness, dry mouth, dry eyes, dry nasal passages, dry skin….dry, dry, dry! (All very Sjogren’s-like.)
I have been faithfully supplementing with Vitamin D3 for the past year or more. Would that cause all these markers to go negative? If so, why would a person still feel so…crummy?
Incidentally, I happened to come across some research that seemed to tie a positive anti-CCP to Sjogren’s. (The rheumatologist quickly shot down that idea! But he’s another story….)
Welcoming any input. Thanks! 🙂
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RxMe
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Apparently, Vitamin D3 (2000 IU) and fish oil (1000 mg) can both significantly reduce the incidence of autoimmune disease...and I have been on both for quite some time! It may explain the normal lab results...but shouldn't one feel more healthy then?
Hello and welcome to the land of unknown . You sound like me in a sense . Ok all I will say is I have speckled as well and labs appear all normal as well although a litany of symptoms over the years . Do me a favor , ? Look up medical medium Anthony Williams on the gram . Peruse his page and then you will start drinking celery juice on an empty stomach . Why ? It brings down inflammation and kills pathogens . I did manage to lower my sjogren markers which were not high really. 2.2 cut off is .09 . At any rate you can also try Goodbye Lupus ( Brooke Goldner) but it’s drinking smoothies and salads like allDay . That’s too hard for me . Look into either one . Either way doctors cannot help these conditions . Well mine could not at least Best of luck
Thank you, Simonebirds! I have looked into Brooke Goldner’s protocol, too…smoothies are ok now and then, but each and everyday? Not my cup o’ tea, either! I have heard of the Medical Medium, and now would be a good time to investigate further!👍
This is my third rheumatologist in 5 years, and I’m belatedly reaching the same conclusion as you. They really don’t know how ( or want?) to treat people who fall between the diagnostic cracks. And to think NONE of the sad lot ever bothered to test my Vitamin D levels!!!! (Only my gem of a PCP did so, and the levels have been suboptimal each time!)
Sometimes I think we patients stay more current on the research than the rheumatologists! 😙
It’s like they want ppl to be sick . Well judging the world it’s what’s happening exactly. Pray you use his tools medical medium . Look I got symptoms still from time to time but I a way better than before . Look him up .follow the gram page . He has amazing books . Chelsea juice on empty stomach first step with his teaching . Reason . It breaks down viral debris . Then it’s foods like parsley , kiwi celery specify to sjogren . He has life changing food book . Anazing, thyroid healing . Liver cleanse ., myster behind mystery illness ( first book ) and celery juice book . Amazing . Hope this helps .
The following excerpt is from a study the American College of Rheumatology did.
Patients with Sjögren’s syndrome (SS) and negative SSA/SSB serology (ie. seronegative SS) have phenotypic characteristics different than seropositive ones, and thus may constitute a disease subset with a unique pathogenesis. Since these patients are older and have a lower frequency of hypergammaglobulinemia, rheumatoid factor, hypocomplementemia, they might be expected to have a more benign phenotype. However, recent reports highlight that these patients have more severe pain and a higher frequency of small fiber sensory neuropathy. We sought to determine if self-reported neuropathic pain was more prevalent among primary SS participants of the Sjögren’s International Collaborative Clinical Alliance (SICCA).
I am currently seronegative, but am still treated for Sjogrens.
Lari, that is an interesting twist and many thanks for the reference!
(I told the rheumatologist that I have been experiencing a burning sensation in my toes on occasion, and maybe that is a sign of small fiber sensory neuropathy?)
The ophthalmologist put me on Restasis for dry eyes for 6+ months, all to no avail. And for dry mouth, the rheumatologist wrote a script for Cevimeline. The side effects outweighed any benefit, so that pretty much put the kibosh on my “Sjogren’s treatment”! (Still maintained on HCQ, however.)
Do you ever feel like a “bad” patient in that your labs don’t corroborate a handy diagnosis? Almost as if you might be imagining all the symptoms — or do you sense the rheumatologist does not take you seriously? I’ve had a swollen submandibular gland since January (affirmed by my PCP), and the rheumatologist never examined it even after I mentioned it. And he could not observe it since I was forced to wear a mask the entire time!!!
Restasis did not work for me either. The best thing ever for my dry eyes was to get my four ducts cauterized. Helped more than anything else and I don’t have to take medicine. I use xylimelts every single night for dry mouth…can’t live without it. Do you use those?
The rheumatologist I went to for just one visit was just awful. He knew very little or nothing about Sjogren’s or Interstitial Cystitis (which is likely associated with Sjogren’s in my case). He said there was nothing anyone can do about Sjogren’s anyway. He was awful, and I never returned.
My urologist prescribes my paquenil, and my PCP believes I have Sjogren’s (seronegative). PCP is also who ran the ANA test. She is a believer that you should go by clinical symptoms and not chase lab results down.
I had a sudden onset of swelling and extreme soreness below my right ear below jaw last week. Diagnosed it myself as an infected parotid gland or blocked salivary gland. Applied hot compress, massaged it, and sucked on sugarless hard candy (sweetened with stevia) per advice I saw online.
Sjogren’s is very understudied. I’m making a generalization here and maybe an unfair one, but it seems rheumatologists deal mostly with rheumatoid arthritis and lupus. One is hard pressed to find one who is well versed on Sjogren’s.
Fascinating! I am seronegative as well but have clinical symptoms of Sjogren’s and am treated for Sjogren’s. My ANA test is 1:320 speckled. My symptoms include dry eyes (four tears ducts are cauterized); dry mouth; hoarseness; and interstitial cystitis. I recently found out I have lung nodules but am not certain they are connected. Also have hashimotos.
My lip biopsy was negative but negative results do not mean you don’t have Sjogren’s either.
I take paquenil, D, zinc, C, Quercetin, curcumin. fish oil, magnesium, and NAC.
Oh, my goodness, LindyK! You sound almost like a lost twin!
My first ANA was likewise 1:320 speckled. Except for the interstitial cystitis, I have pretty much ALL the symptoms you have had…including a recent biopsy for a lung nodule!
I also take Plaquenil, Vit. D3, Vit. C, zinc, fish oil, NAC, magnesium (also K2, calcium & digestive enzymes). I’ve read that Quercetin can mimic the role of Plaquenil, so I didn’t want to overdo it! And being on a blood thinner, curcumin is a no go for me, as well, but supposedly a great anti-inflammatory.
As for doing a lip biopsy, I am afraid of injuring one of the nerves in the lip, which apparently is a real possibility….
Wow, Reply to RxMe, we do sound like twins! I am not a fan of the lip biopsy and since having mine have learned they are quite unreliable for these reasons (that you are likely aware of):
A negative finding does not rule out Sjogren’s. False negative results may occur due to problems with the biopsy sample, the reading of the sample, or an inadequate number of representative glands. Early in the disease, inflammation may not have developed into clusters of cells that qualify as foci. Late in the disease, atrophy and scarring may predominate. The focus score may drop to < 1 as the disease progresses.
I believe any number of the possibilities listed above could have led to my negative result. The ENT who performed the biopsy was not experienced, as I live in a rather small town and he could not have done many of these. Also, I think I have had Sjogren’s for a long time and that the last possibility could apply to me.
If I had known what I know now, I wouldn’t have bothered getting the lip biopsy. I agree nerve damage is a real possibility. It’s been about 8 months since I had it, and my lip is still numb.
May I ask what the results were for your lung nodule biopsy? I’m a little worried. I have three small nodules on the right lung that were recent incidental findings on a kidney CT scan. I’m being referred for follow up and haven’t yet seen a pulmonologist. Since I’ve known about the nodules, I learned Sjogren’s can affect the lungs. I have been wondering whether I’ll just be periodically monitored via scans or if a biopsy will be recommended.
I had a solitary pulmonary nodule. (SPN) in my lower right lung, discovered incidentally on a heart CT scan. (You can follow my previous postings on the Lung Cancer Support group on Health Unlocked, if you like.)
Since the size was over 1 cm, and due to other factors, I had about a 20-30% risk of cancer—moderate risk. I elected to go for the biopsy rather than live with the uncertainty of periodic scans.
The biopsy was a piece of cake; I barely felt a thing. Fortunately, the surgeon was able to aspirate tissue through my back, so no need for a bronchoscopy.
Happily, the nodule was benign (yay!), so you’d think End of the Story. Not so fast!
Because of significant scarring that was found in the lung, I still have to go for periodic CT scans! Apparently, there is such a thing as Lung Scar Cancer! If you have scarring in the lungs, cancer may be more apt to develop in those areas, perhaps due to a diminished blood supply to the scar tissue.
You might want to check if that is an issue with you. If so, you may want to think twice before going through a biopsy (not medical advice!).
At any rate, lung nodules seem to be fairly common. And the great majority of them are totally innocuous. Generally speaking, I think the major concern is if they start to show accelerated growth, are over a certain size, present with an irregular shape, or show retraction in the lung parenchyma.
As opposed to a solid nodule, ground glass lung nodules may require up to 5 years of surveillance, as I recall.
Now I’m wondering if Sjogren’s may increase one’s chances of lung scarring? I think that’s true for RA.
I hope this helps, and I hope this nodule business will not be worth fretting over after all! 🙏
Please keep me posted. Happy to throw in my 2 cents!
Thank you, RxMe, for sharing your story. Sounds like a scary ordeal and I’m so sorry you still have to go through the stress of periodic CT scans. Glad to know the biopsy itself was a piece of cake. I have three nodules that I know of that are 2-3 mm but I don’t know anything else about their characteristics right now. I will be scheduled soon with a pulmonologist and learn more. I only recently begun reading about the ways Sjogren’s can affect the lungs.
LindyK, 2-3 mm is thankfully very, very small. I don’t think a biopsy can be done unless the nodules are over 10 mm, so no worries about that procedure just yet!!!
It’s good to talk with a pulmonologist. Be sure to vet them beforehand and make sure he/she has a good bedside manner…the first two I consulted with were terrible, and created a lot of anxiety for me — even though they had all the right pedigrees!!! 😮
RxMe, thanks. Good advice about vetting the pulmonologist. Unfortunately I have run into those docs with bad bedside manners! They are indeed terrible!
I figured the nodules are too small to biopsy. The radiology report states “follow-up CT chest is recommended if patient is at high risk for lung cancer as per Fleischner Society guidelines.” Since the nodules were an incidental finding on a kidney scan, I am wondering if the entire lungs were captured because the section heading on the radiology report says “lung bases.”
LindyK, I wish you all the best! I meant to tell you how sorry I am that your lip biopsy proved to be inconclusive, and that you were left with a nerve injury because of it! As time goes on and our maladies multiply, we are increasingly at the mercy of the health care system. And sometimes their agenda does not align with our own, I’m afraid! I think it best to be quite skeptical of any procedure before jumping in with both feet….better the devil you know than the one you don’t! 👹
I think we think alike, RxMe. I think what’s happened in the last two years has shown that the health care system cannot be relied upon or trusted. I am not sure it can regain its integrity (in my opinion). That’s another conversation.
I am visiting my primary care physician on March 22 and she will be coordinating the referral to the pulmonologist. I need to start looking into who’s good and who’s not.
Yes, LindyK, it’s amazing how our experiences resonate, & how similar are our attitudes to the whole healthcare fiasco!!! It’s such a relief to find someone who has been there & done that!!! 🙃
I live in a city that has been very locked down for the past 2 years. Although the mandates have recently been largely lifted, most people are still masking up. It’s so dehumanizing. And I refuse to live my life in a constant state of fear. Having pretty much followed the FLCCC protocol for much of that time - and despite having an autoimmune disease (which one is open to debate!) - in all that time I have not had any viral/respiratory illness. So there’s that!
You are probably right about the CT having only captured the base of the lungs. My heart CT also did not give a very clear image of the nodule, since the focus was really not the lung.
Hence, “incidental finding.”
It’s so important to at least have a PCP you can trust. I hope yours can help steer you to a very good and caring pulmonologist. You may have to kiss a swamp full o’ frogs 🐸before you find the right one!
Speaking of trust (or lack thereof), as a post script, my rheumatologist is now suggesting I give azathioprine or Cellcept a whirl.
A cursory review of the possible side effects is enough to make your hair curl…if you have any left after taking them!!!!
I have never heard of the drugs you mentioned (azathioprine or Cellcept)…will have to check into those! But I’d be reluctant to consider taking anything with potentially wicked side effects.
I followed the FLCCC protocol as well. I reckon you didn’t get a respiratory illness because you were on paquenil!?
My “trusted” PCP refused to prescribe HCQ when I got the ‘rona in Nov 2021…saying “it doesn’t work; there’s no data,; there’s a shortage of it; I can’t prescribe it.” All lies, and I said “that’s not true” to each and every lame reason she gave. (This was before my urologist prescribed paquenil.) So, because the healthcare system failed me, I took it upon myself to locate Ivermectin, and I took it.
Thank goodness no one has tried to pressure me into getting the jab. (I would never.)
I refuse to live in fear, too. I never once feared the virus but what I did fear was the suppression of therapeutics.
Crimes against humanity are the only words I have.
Yeah, I am kind of nervous about upcoming scans…I try not to worry because I know the majority of nodules are benign…but I don’t know what’s cooking either. Guess none of us do. I know just how I have been feeling lately.
The only people I know who had the 'Rona were all jabbed. Of course, there aren't many like me around these here parts who aren't jabbed....! And as such, you certainly don't want to advertise your Jab Status, or you might risk social ostracism and hate. It's crazy. I don't detest people for being vaxxed. It's should be a choice, not a mandate. And an informed choice, at that!
Good on you, LindyK, for powering through and scoring the HCQ and the Ivermectin! Back in 2020, when the first studies were showing the possible efficacy of HCQ against the 'Rona, I did have some delay in filling my script at the local pharmacy. The pharmacist was preferentially giving it to medical personnel and their families. I can kind of understand that, but at the same time...no. And yes, I do credit HCQ with my never getting ill from the Koofie-Koo. Let's hope that we never have to worry about the therapeutics supply ever again.
Well, try not to worry too much about the scan. I have another lung scan coming up next month. It's on my mind, but with so much else afoot in the world, it pales into insignificance.
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