u/iVegMac

For those of us with cardiac involvement either from Sjogren’s or perimenopause or whatever else… should we avoid xylitol and just have dry mouth ? Apparently pilocarpine and cevemiline have cardiac side effects, too. I am quite fed up with Sjogren’s, y’all.

How long do you give pip Flecainide to work before going to the er?

Any other ladies have an issues like this? I get PACs for days or weeks between ovulation and menstruation, then I’m fine the first few days of menstruation, and near the end i have AFib. If AFib is triggered by changing hormones levels could HRT stop AFib? Or make it worse?

Can anyone recommend a therapist that can help with health anxiety from chronic illness and compounding medical complexities? I would prefer a female who isn’t religious based and must have someone who is in-network with UHC. If they do EMDR that would also be great.

I’m in southern Indiana so north of the river is fine as well as in Louisville. Thanks in advanced!

Hi, i (39F) have Sjogren’s disease and have started having aFib (once in July and last night) though I’ve had random palpitations for years. I have only been under anesthesia once for a colonoscopy and it made my autoimmune disease flare up for about 6 months. Having another flare for that long plus just being all around terrified of surgeries and anesthesia makes me super anxious and hesitant to have an ablation though it seems like the best option for me especially since i really need to be on a DMARD.

So tell me all of your success stories if you’ve had an ablation. (If you have a horror story, please go somewhere else i don’t want to hear about that i cannot take my Valium and i WILL spiral.) Help me find some courage and bravery to just get this shit done.

My rheumatologist was hesitant to start me on any meds at all because i don’t have high inflammation markers or joint issues on imaging. Most of my problems seem to be neurological/cardiac and likely stem from ANS issues. But after i had an episode of aFib she said we could try plaquenil.

Well, i had aFib again and my cardiologist/electrophysiologist wants me to be on Flecainide twice daily and that can’t be taken with plaquenil. 🙃 i don’t think she will swap me to anything else because she seems uncomfortable with treatments which is nuts (she haas highly recommended in my community sub).

It looks like IVG is most helpful with ANS issues. I am waiting to get into a neuroimmunologist, ENT and gastroenterologist. I have a pulmonary function test soon and am getting a heart monitor soon as well.

Anyone else with aFib? Or ANS issues? What meds do you take? What has helped you most? And who has helped you most (which type of Dr)?

A little background first, May 2025 i took my dogs to hike at a lake. They picked up over 40 ticks EACH despite it being a well maintained concrete pathway, despite them being on preventatives and despite us not going off trail.

August 2025 we lost our 7 1/2 year old dog to an immune mediated brain stem disorder. October 2025 our 10 year old dog started throwing up 2-3 times per week. Took him to the vet and he was diagnosed with Rocky Mountain Spotted Fever and proteinuria without CKD. Vet wanted us to see a specialist for the vomiting and gave us meds for the RMSF.

Specialist, said the meds for RMSF weren’t long enough or strong enough and upped the dosage and lengthened the course. Specialist still went ahead and did ultrasound and blood work along with ACTH. We were told our dog has Cushing’s and pancreatitis. They switched his food and wanted us to start Vetoryl. I looked into Cushing’s and RMSF and felt like he probably didn’t have Cushing’s based on symptoms vs his presentation and i found that RMSF can cause false positives in many tests.

Took my dog to the reg vet 2 weeks after the meds for RMSF were finished (mid Jan 2026) and we did LDDST, it was negative. My vet wanted us to see a specialist again. So we went to specialists #2 (March 2026) who looked over everything and also thought our dog does not have Cushing’s and more likely has IBD than pancreatitis due to pancreatic lipase testing and malabsorption panel.

Started b12 supplement and started soaking his food in water and hand feeding small meals 4 times a day. Vomiting decreased but was still present. April 2026 we started laser therapy for IBD twice weekly for a month, then once weekly for a month. Mid June to mid July he didn’t throw up at all so we thought the laser was working. Tried to change to once every other week and he started throwing up once a week again. Vet said to see specialist again but wanted us to try yet another specialist.

Just took him to Specialist 3 who also agrees no Cushing’s and did an abdominal ultrasound and X-rays for stomach/esophagus. My dog has zero remarkable findings in his ultrasound and X-rays and most of the things seen on the ultrasound from Specialist 1… not present on this ultrasound. Was specialist 1 lying? Did RMSF cause these issues seen by specialist 1? What in the world is going on here?

We are starting my dog on a course of locally acting steroids and if that doesn’t help we will try an endoscopy but guys I’m at a loss. Has anyone experienced anything similar ?

If you’ve seen both, even briefly, what kind of Dr did you feel you got the best care from?

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I first started having Sjogren’s symptoms in 2010, diagnosed in 2018, on my 4th rheumatologist due to previous rheums moving then me moving, I’ve gone mostly unmedicated specifically for Sjogren’s since 2018.

Previous labs only showed elevated anti-SSA, current labs show high anti-SSA, high ANA speckled, and high anti-PAD4.

Symptoms are moderate dry eye, slightly more than moderate dry mouth, myofascial pain, random heart palpitations since 2020 with an instance of paroxysmal aFib w RVR a couple weeks ago, massive fatigue, headache nearly daily with onset around late afternoon to early evening, sciatic pain, rosacea, seemingly slow gastric emptying, mouth ulcers, dry skin, vaginal dryness, pain in my feet when walking for more than 10-15 minutes.

To complicate matters, i have factor v Leiden, adhd, asthma, binocular vision disorder, hypermobile spectrum disorder. Also myofascial pain syndrome and/or fibromyalgia and/or me/cfs but apparently you can’t test for any of that and it’s all the same thing 🙄

So, since i had aFib I’m on Eliquis and can’t take NSAIDs. Since i had/have aFib i either can’t start plaquenil and if i do i cant use Flecianide if i ever need it. I can’t currently take my adhd meds bc maybe that is what’s bothering my heart but then i can’t function without the adhd meds bc of the fatigue and the ADHD. Apparently taking Pilocarpine can also cause heart rate issues so should i even bother taking that?

My rheumatologist says my blood work doesn’t indicate that i have inflammation so she doubts Sjogren’s is causing the aFib but says i could have POTS. Cardio says i don’t have POTS but didn’t do a tilt table test and didn’t even send me home with a heart monitor after having aFib. Previous rheum said i probably have neuropathy but this rheum says i have to see neuro to get testing for that. So now i have rheumatologists, cardiologist, hematologist, ENT, neurologist and primary. New rheum also wants me to do pulmonary function test so i guess i may see a pulmonologist too. I feel like im adding more and more doctors and i feel like im just going to be bounced around between them all while they say ‘i did my part’ and nothing gets accomplished.

I’ve had Sjogren’s for over 15 years and just tested positive for anti-PAD4 IgG which indicates early RA. My rheumatologist asked if i had joint pain and I said i was honestly unsure because my myofascial pain is always bad. I’m constantly in pain so i can’t really differentiate. We did x-rays and ultrasounds which came back clear.

But I’m wondering what some early signs and symptoms were for you folks who have had it a while and can actually recognize the symptoms. I have been in more pain this year than I’ve been in the last 15 but i also tested positive for a high ANA for the first time and now I’m having some arrhythmia issues so i know Sjogren’s is affecting my ANS. Just looking to better understand how I’m feeling i guess.

For the first time in ten years (post diagnosis) i have a high positive ANA and anti-PAD4 iGg (used to just be positive SSA). Less than a month after getting a new rheumatologist and having these positive tests im stuck in the hospital due to aFib. Potassium is on the low end, creatinine is high, and i have a blood clotting disorder so now i need anti-arrhythmia meds and a blood thinner. My rheumatologist wanted me to see GI, neuro, and ENT. Now i have to add cardio, renal, and lord knows who else to the roster. So yeah Sjogren’s sucks. I can’t wait for these new Sjogren’s drugs to get fda approval.

I have done zero multiplayer quests. Is anyone available to play to help me out with that?

I’ve been having intermittent issues since 2010. Dry eye for a while, swollen salivary glands a couple times, mouth ulcers occasionally. No doctor’s ever considered it anything other than a fluke because i was in my 20’s.

In my 30’s i felt like i was dying and finally found a PCP who took me seriously and ran tons of blood work. High postive anti-SSA, low ferritin, low b12, low vit d. Got in with a rheumatologist but in the 6 months wait for my appt that Dr decided to move across the country so i only had one appt. I couldn’t drive myself the 2 hours to keep seeing a rheum so i just put it off.

Finally we got a rheum in the city i lived in and he seemed great at first. Then he started sleeping with his NP and i guess the stress of hiding that from his wife made him mean and unhelpful to patients. He tucked tail and moved out of state so there was once again no rheum in my city.

Then i moved out of state and a stressful year due to pet issues and housing issues. Finally decided to find a new rheum, she knew i had been positive for anti-SSA 3 times but did blood work and said ‘your blood work is normal, you don’t have an autoimmune disease.’ She didn’t even run anti-SSA so i got mad and didn’t go back.

Finally decided i better get my crap together before i turn 40 so i got in with a new rheum in a larger city. It’s crazy that it’s taken 4 rheumatologist to find one who knows what she is doing. She ran so many panels I’ve never even heard of and we are doing baseline imaging! Unfortunately though I’ve gotten an RA diagnosis (anti-PAD4 igG was highly positive) on top of my Sjogren’s diagnosis now. My ANA is positive for the first time as well.

Here’s hoping whatever medications she puts me on stops the RA damage before it can even happen and that my oh so sensitive body doesn’t hate the meds and react badly. If you have had terrible rheumatologist, keep searching! Ask your local sub Reddit for recommendations.