r/Autoimmune

Hello!
I guess I am just curious what does one do if you have a positive Ana but then your titters come back as less than 1:80 with no pattern- essentially negative. Especially if you are symptomatic not only physically but it’s really ironic my iron panels have plummeted for no reason, along with elevated liver enzymes. Maybe it’s unrelated

How does one advocate for themselves in this situation and not get blown off?? I was pretty much told it’s not bad enough yet for rheumatology to do anything.

Prednisone is a steroid prescription. Was it one full dose throughout seven days or were there days included for tapering/lowering the dose towards the end?
Did they prescribe it to only help narrow down an autoimmune diagnosis? Abnormal positive Ana.
And did it help?

Background story: Since 6 years ago I have felt very fatigued, brain fog, had some frequent mouth canker sores, and had some joint pain. I was tested abnormally positive for blood marker ANA, while also tested for most autoimmune conditions and negative for those. My pain and symptoms have persisted and worsened with also now having itchy skin and meanwhile my ANA bloodwork continues to be positive. So this rheumatologist I started seeing prescribed me one week of prednisone. She said to help narrow down what I have or to know what medication she can prescribe me to treat my pain. However, a previous rheumatologist who also wanted me to have prednisone for one week (which at the time I was too scared to try), he also prescribe me one week of it I believe or maybe a few extra days but what I do remember for certain - is that he prescribed it to me about a week with tapering down the dose towards the end. I’m wondering why this rheumatologist prescribed it without tapering/reducing the dose towards the end. She didn’t seem attentive nor caring in the appointment. I fear she might not care about tapering down because it does seem like it helps to lower the prednisone amount after a week trial.

Recently got dignosed with non radiographical axial spondyloarthritis

I am in early 30's

My rhemutologist calls my as mild

I have no morning pain or stiffness or night pain

I have no overt erosions ,no fatty metaplasia , no scelrosis

Clean blood markers and no symptoms other than back pain

I was dignosed solely on billateral sacrolitis with edema more on illac side than sacral

My stiffness is guarding in low back that's goes off by bird dogs instantly

My pain is in only in movement like bending down etc

I have no problem laying down or sitting as long as I want

Very little to no fatigue

However the abolsuute worst part about my disease it's never ending

It's the weight of dignosis

The fact that it will keep getting worse as time goes on

I simply don't see the point of living anymore. Everytime I take med i think what's the point? It won't heal me

I started taking upacidyn one tablet a day just from a day ago

I simply don't see the point of living anymore

I have low key given up i hardly leave my room anymore

What I want is never happening and simply not possible, I don't see the point anymore

Edit : my blood markers are crp 2.5 and esr 7 tested 2 days ago

What do think think this kind of treatment could bring when it comes to autoimmune disorders? Are you hopeful that it could make a difference? Are there certain autoimmune diseases where Car at Therapy looks more promising?

Hi!

So, they suspect that I have SLE or MCTD due to my symptoms and ANA pattern.

My issue is that they can’t diagnose until all boxes are ticked and I don’t know when that will be. I’m currently in a flare that has been lasting for a year now. Rheumatologist, immunologist, neurologist and GI specialist are all treating different symptoms. I just really want to be able to move my body more but my joints are killing me.

It’s my shoulders and knees mainly. However, it cannot be seen from the outside and my inflammation blood markers are fine as well. They did find bursitis in one shoulder about a year ago (without being able to see anything from the outside). I had steroid injections, which helped my shoulder until it didn’t anymore.

Rheum won’t do more imaging due to it all looking fine from the outside but the pain is only getting worse (and spreading tbh, wrists, fingers, elbows, ankles and hips) and keeping me up at night.

NSAIDS are horrible for my stomach so I can’t take them when I need them. Diclofenac gel it is.

Is or was anyone in a similar situation and what did you do? I just want to move my body so bad.

Thanks!

I hear people talk about flares a lot and I don't know if I have them because for the last 3 years I have continuously gotten worse. Some days I feel okay, but never good. When I feel okay I typically overdo it and pay for it for days afterwards. My biggest concern though is that I have exhaustion like I've never experienced before. I will wake up in the morning maybe around 8 and my eyelids feel like they weigh 100lbs. My body feels like someone is holding me down. I can't keep my eyes open and I fall back asleep. For hours. I wake up and it happens again. Today I slept until 2pm. Then I felt okay. This happens 1-3 times a week. Last week 2 days in a row I couldn't get out of bed until 1:30 and 2:30 and then I still go to bed at a normal time and sleep normally the next night. I honestly feel as if I have been drugged. This seems insane to me, but is it? Or is this just my life now?

I don't know what is responsible. I have hyperparathyroidism, Hashimotos, CFS, fibromyalgia, Sjogrens, Psoriatic Arthritis, Spondylitis and bilateral sacroiliitis. Lots of inflammation, but not sure if it's one of those things or something additional. Haven't started any meds yet outside of my thyroid meds I have been on for many years.

Anyone else whose fatigue is like this? I have always had some fatigue from Hashimotos, but not to the point that I literally can not keep myself awake no matter what. Sleeping in for me used to be 9am.

Hi all! I am 24F and started accelerating down this fun autoimmune path ~2 years ago. My diagnosis is UCTD, but I am also officially diagnosed with Sjogren's -- there is enough else going on in addition to the Sjogren's (likely progression into SLE, Hashimoto's) that my rheum is keeping the UCTD label for more broad treatment for now.

I've been on Plaquenil a little over a year now, and while it has definitely helped maybe ~60% with symptom management, I have been having new additional symptoms emerging on top of the HCQ with an increasing frequency of flares. I am still young, just finished undergrad and starting grad school, and I am having days when I can't lift my arms above my head, walk properly, write my name by hand. I can't be on the beach with my friends without being incapacitated in agonizing pain a few hours later. I've started having glossitis on my tongue, patches just falling off, difficult time eating due to salivary pain. My bloodwork keeps adding additional positives with each retest.

I will be meeting with my rheum again soon, and I imagine she will add something on top of my HCQ. But -- given my age and how fast my symptoms are progressing and breaking through my current treatment, I am concerned about quality of life dealing with this rapidly progressing disease for decades... Are there lifestyle adjustments or things I should be implementing now to help the longevity of this situation? A certain type of exercise, supplements, lifestyle adjustments, medications? I have been trying to up my vitamin D and wear sunscreen, I even based my choice of grad school on an environment with less cold weather since that aggravates my joints, but it feels like the disease is outpacing me. I considered myself pretty fit and healthy before this, and always pictured trying to remain healthy into old age which feels like an unachievable goal at this point

i read so many conflicting reports about it so idk. is it really effective? i have hashimotos & and antibodies that indicate autoimmune gastritis (but no deficiencies)

she claims that i can get more autoimmune diseases if i don’t keep the diet

how valid is this? any resources?

My doctor recently put me on a autoimmune diet, because of high inflammation I'm experiencing and told me i might have to follow this for the rest of mylife. Looking for guidance on what food I can eat. Lot of places are suggesting red meat but I am vegan

And I wanna know about how you all are copping with autoimmune and following a restrictive diet

It took three years for me to know what worked - because it was a Covid infection that got me sick so I’m politically inconvenient to talk about in the UK ( shout out to other Covid sufferers).
Who else had an autoimmune directly they can link to Ann infection - mine was ten days onset after Covid.
For reference I have autoimmune dysautonomia with SFN - had remission but relapsed now trying more treatment combined with plasma

There’s a lot going around about how autoimmune disease can be caused by profound stress, emotional trauma, etc.

If someone is dealing with unresolved trauma around a long term relationship ending and repeated betrayal and disrespect in their close relationships, how would they heal that? What if they stopped trusting people because of unfortunate luck with the family they were born into and not finding close relationships that felt emotionally safe and they stopped feeling safe or connected to anyone anymore?

36F | 5’2 | 150 lbs | PNW, USA

I’ve been dealing with a 4-year multi-system mystery: symmetric joint pain in my hands and feet with 2+ hour morning stiffness that improves >90% on prednisone (and relapses with every taper), childhood-onset Raynaud’s, lifelong dermatographism, chronic dry eyes/mouth/skin, recurring swollen lymph nodes with low-grade fevers and night sweats, chronic leg swelling, photosensitive rashes, unexplained petechiae/bruising, and chronic nerve pain/tingling. Again, this has been going on for FOUR years.

This spring things escalated. Chronic hives that lasted days. leaving bruises behind, culminating in an anaphylaxis ER visit in May, which still broke through despite a high dose prednisone burst after the ER.

Through all of this, my ANA, RF, CCP, ESR, and CRP have been normal/negative every single time, which meant years of being bounced between specialists. At one point a previous rheumatologist diagnosed Sjögren’s clinically, then left the practice. No SSA/SSB, no lip biopsy, nothing to back it up.

This week I met with a new rheumatologist. It was night and day. She spent over 90 minutes with me, went through the binder of my records I brought, and actually found things on exam: moderate synovitis in both ankles, puffy fingers, bilateral leg swelling, plus shading leftover from the hives. She said she doesn’t think it’s Sjögren’s. She thinks it’s a “very real, very complex” autoimmune process and mentioned lupus, vasculitis, myositis, and connective tissue disease as possibilities. She ordered a huge workup: AVISE UCTD panel (the send-out lupus/CTD test), complements (C3/C4/CH50), ANCA, cryoglobulins, myositis panel (CK, aldolase, MyoMarker), SPEP, urinalysis for possible kidney involvement, and contrast MRIs of my hand and foot. She also said if everything comes back negative again, the next step is tissue biopsy; skin, lip, muscle, or vessel, because seronegative disease is still disease.

In the meantime, I still feel like shit. I feel like my body has a gigantic “check engine” light on that nobody can understand. I’m in the waiting room / purgatory phase and would love this community’s perspective, opinions, theories… literally anything! Many thanks! 🙏

Hi everyone. I have neuro-Sjögren’s, and I was wondering if anyone else with neuro-Sjögren’s experiences something similar.
Besides my dysautonomia symptoms, I have episodes where I feel extremely unwell, and the fatigue is completely out of proportion to the amount of activity I do. For example, if I simply get up to pour myself a glass of water or walk a few steps around the house, I feel like all my energy suddenly disappears. My muscles start to ache, and it feels as if I've done intense physical exercise, even though I've barely done anything.
This isn't just the dizziness or rapid heart rate that I associate with POTS. It's a completely different feeling, a whole-body collapse. I feel like I have to lie down immediately, not because I think I'm going to faint, but because it feels like my body simply can't keep functioning. It's as if every cell in my body has run out of energy.
During these episodes, I also have a terrible overall feeling that is very difficult to describe. The closest way I can explain it is that I feel as if I've been poisoned or intoxicated. I feel profoundly weak, nauseated, my muscles ache, and my entire body feels extremely unwell. Sometimes these episodes even happen while I'm already lying down and doing absolutely nothing.
These episodes can last for several days, not just a few hours, before I gradually start to feel better again.
Has anyone else with neuro-Sjögren’s experienced this? Is this considered part of the disease, or did you eventually find another explanation?

I have UCTD leaning sjogren's. I've been put on plaquenil and then cellcept added about six months later, been on them for about a year and a half and a year respectively. I work outdoors in very high temperatures every day, which previously was never a problem. But since going on meds, especially the cell cept, I keep having this problem outside where I will feel like someone is squeezing my chest, or like I can get a full breath but it's not actually giving me oxygen. My watch keeps track of my pulse ox and it does not drop during these episodes, my heart rate is always high but it's always within my normal range during these episodes. My CBC panels have been consistently normal since being put on meds, I am not anemic or anything. I drink about 100 Oz of water minimum on work days because I sweat profusely and add electrolytes as needed. I cover as much of my body in light clothing as I can and wear sunscreen on the parts I have to leave exposed so I don't die of heat stroke which is just my forearms. The cell cept has not had any apparent effect on me so I think I'm going to ask to go off it at my appointment later this month. I am not on any other meds this year that I was not on last year.

I wanted to ask if anyone has anyone had this problem with these meds, if so which one, and did it resolve when you went off of them? Is this more likely an evolution of my autoimmune disease? Is there anything I should ask about it other than mentioning it at my appointment later this month? Things that have helped you if you have this problem?

Hi- already diagnosed. Looking for input, I’ve been on HCQ for 5 weeks and suddenly my hair texture is different and the volume is much thinner. This is not my baseline.

If this happened to you, did it go away? And how long did it take?

What changed your life, minimized symptoms, made you feel insanely better, lose weight? Conventional medication? Eastern medicine? Woo woo theories? Eastern medicine? What exact testing, gut/hormone? Supplements?

For context, I have Hashimotos + hypothyroid. Although, I have many additional symptoms that are progressing and may not be related to hashis (maybe a new autoimmune?). Weight gain, headaches, purple/yellow around my eyes, extreme joint pain, rashes and hives, exhaustion no matter what, muscle weakness. Taking Levo 50mg and liothyroine 10mg, which has lowered my TSH but done nothing to help with symptoms.

Tested for lupus, ANA, sjorgens, RA, Lyme… all negative.

I will go any route and change my life but I need to find something.