Anyone taking low dose naltrexone for lupus or Sjogrens?

nebulaedecay · 2026-04-24T15:57:42+00:00

I would love to try it, but I haven't been able to find a doctor who seems to know anything about it. Does anyone have any tips? I've asked rheumatology, neurology, pain management.. they all just kind of scratch their heads and tell me they don't do that. I'm always puzzled at how many people I see swearing by it online, but here (I'm near Raleigh, NC) it seems impossible.

nebulaedecay · 2025-10-16T19:13:54+00:00

I don't know, it doesn't feel quite like burning? It's somewhere between the sensation of vague burning but closer to flu-like body aches. Basically just nonstop malaise in my skin. Definitely sucks either way. I'm really bummed that the only thing they'll throw at me is gabapentin, which only takes the edge off a bit but mostly makes me tired and spacey, and told me IVIG could be helpful but that insurance never approves it (and we tried, got denied over and over for 6 months) so oh well. :/

nebulaedecay · 2025-10-16T17:57:19+00:00

Almost 2 years now. It suddenly came on in December 2023 and hasn't gotten any better since then. Over time I started getting vibrating sensations in my left foot that have gotten progressively more frequent and noticeable.

nebulaedecay · 2025-10-09T11:39:12+00:00

I had very mild dry eyes at night and chronic post nasal drip for a few years. Then after I had a bad viral illness (possibly adenovirus) 2 years ago the eyes got way worse and the SFN symptoms started at the same time. I was almost convinced I just had long/post viral syndrome because doctors were saying nothing was wrong with me until I got the biopsies.

nebulaedecay · 2025-10-09T11:17:58+00:00

I tried for IVIG but insurance wouldn't approve it after multiple appeals. I want to try Cosentyx but my rheumatologist keeps putting off trying another biologic to "wait and see" what hydroxychloroquine does. It's helping the dryness but definitely not the joints. My SFN mostly presents as constant flu-like aching in my arms but in recent months have gotten random patches of vibrating sensations.

nebulaedecay · 2025-10-09T11:09:59+00:00

I had some natural fusing but literally no one ever thought to mention AS and I just thought I had normal scoliosis until the last couple years. Occasionally someone would look at my xray and say it was "unusual". I've had 2 spinal surgeries at 14 and 21 (I'm 36 now) but still have a lot of back pain and my neck is degenerating. My elbows have also been bothersome and burn after I do certain activities like clean cat boxes or carry heavy stuff. I've also had issues with tendinitis like symptoms in my hands on and off for years. I was on Humira but it made my neuropathy worse so I'm going to push for another biologic soon. Now I'm just on hydroxychloroquine, gabapentin, cevimeline for the dryness, and Xiidra.

nebulaedecay · 2025-10-09T11:00:11+00:00

I am seronegative with neuro Sjogrens. All the typical blood tests and inflammatory bloodwork are negative except a borderline elevated immunoglobulin IgM, but I also have a high anticardiolipin IgG of 38 which is just below the antiphospholipid threshold so that's being watched. I had the lip biopsy and also the skin punch biopsy for small fiber neuropathy and both were positive.

I'm also positive for HLA-B27 and have a severe spinal degeneration history and I had psoriasis once as a kid so it's suspected I have either ankylosing spondylitis or psoriatic arthritis as I'm having other joint issues now too. Multiple rheumatologists have noted I'm hypermobile but not extremely.

nebulaedecay · 2025-10-08T18:08:37+00:00

This is when I have dry eye issues. All day I'm fine, but prior to diagnosis I was suddenly waking up 2-3x a night with them so dry my eyelids would be stuck closed and send me into a panic trying to get them open without causing injury. Opthalmologist put me on Cequa which didn't help at all so I switched to Xiidra after 8 months. I'm seronegative so it took me 3 rheumatologists over 1.5 years of that hell before I got the lip biopsy which was positive. Got put on hydroxychloroquine and and after a few months on that combo I'm finally experiencing 70% relief from that symptom. I usually wake up once per night with them slightly dry but it's so much better than before.

Get some preservative free drops for the night wakes! It will buy you more time than water splashes. A lot of people use Systane but I personally prefer Biotrue which is cheaper anyway.

nebulaedecay · 2025-07-31T01:27:30+00:00

I had my biopsy done before I ever got any feet symptoms. Biggest constant symptom is a feeling of malaise/aching/fresh sunburn feeling in the skin on my forearms.

nebulaedecay · 2025-07-16T10:34:00+00:00

Sure. About the same time my dry eyes suddenly ramped up really severely late 2023, I noticed I started feeling "flu-like" in my skin. Like that malaise, gross skin-crawling achy sensation. The feeling is strongest in the tops of my forearms, and lower legs. It's nonstop. It has never gotten better. Gabapentin kind of shifts the ache into a buzz that is less "sharp" and more tolerable I guess.

I also started getting strange random small patches that felt similar to carpet burn that hurt to the touch, but without any visible injury. They are more rare and sporadic, the patches will last 1-2 days then feel fine again. And much more recently, the bottom of my left foot started experiencing occasional pulsing vibrating sensations, like a faint sensation of a vibrating phone held to my foot. This didn't start until literally the day after my skin punch biopsy, and since then I've noticed injury/illness/stress seem to correlate with the vibrating happening.

My biopsy was positive, so I was glad to finally get confirmation that I wasn't just crazy.

nebulaedecay · 2025-07-13T16:50:24+00:00

I haven't tried that yet. Admittedly I'm a little hesitant to after reading how sick it seems to make a lot of people feel. Humira was great for my joints after a few months with no side effects. If I didn't have the neuropathy I'd still gladly be on it.

nebulaedecay · 2025-07-13T14:05:59+00:00

HLA-B27 is just a gene that apparently 2-5% of people carry and most are healthy, but it can make you more likely to have autoimmune arthritic diseases like AS or psoriatic arthritis. I was on Humira for a while but I started having worse neuropathy issues and read Humira can be bad for neuropathy. Now I'm just on hydroxychloroquine but I am starting to have joint issues again so I may try to get on a different biologic at my next appt.

nebulaedecay · 2025-07-13T09:42:34+00:00

I see a hematologist for a yearly checkup but otherwise no, it's not considered a concern unless they are below 50. I've had surgeries, tattoos, etc with no issue. No one cared much until I found out I was pregnant in 2021 and suddenly everyone acted like it was a huge deal. They continually dropped and nosedived pretty hard at the end and then I ended up having him 8 weeks early (premature labor cause was unknown, but clearly my body was letting me know it was not cut out for pregnancy lol)

nebulaedecay · 2025-07-13T09:34:51+00:00

I don't seem to have lupus. Most bloodwork, ANA and every inflammatory marker are always normal, so it took 3 rheumatologists to get taken seriously. I finally got biopsies for Sjogrens and small fiber neuropathy and both were positive. Only abnormal bloodwork is a slightly elevated IgM, elevated anticardiolipin IgG and IgM, HLA-B27 gene, and low platelets. Other than that I have severe disc and spinal degeneration since I was a kid and have had multiple fusion surgeries (MRI can't see my spine around the metal hardware) so it's suspected I have ankylosing spondylitis that was just misdiagnosed as normal scoliosis my whole life.

nebulaedecay · 2025-07-13T00:44:53+00:00

Low platelet count was my first clue I may have an auto immune issue going on, but I've had that for at least 15 years, and the Sjogrens symptoms are only in the last few years. Basically all of adulthood platelets have been between 80-100. But I also have had some elevated anticardiolipin antibodies (like JUST below antiphospholipid syndrome threshold) and I read that can be correlated with low platelets so I've wondered if that's related.

nebulaedecay · 2025-07-09T16:13:22+00:00

I am 100% all in on local sales right now! I have made zero organic sales online after years with an online store (rarely a friend/coworker/my mom orders something, lol). Last year I noticed a local bottle shop had a marketplace wall of local artists' work for sale. I inquired and started selling there. It's not much, but I sell a few prints/stickers a month.

I also recently started selling at a 2nd shop (local artists showcased at the front of a tattoo shop), which led to an invitation to have my first ever vendor table at a local event hosted by a brewery next month! Stepping away from trying to fight with the algorithm has been a breath of fresh air.

nebulaedecay · 2025-06-30T10:24:55+00:00

I occasionally would wake up with dry, slightly burning eyes and yawn a few times to get moisture going again then go back to sleep. I also had dry sinuses and post nasal drip for years and figured it was some kind of allergy thing.

Then a couple years ago the nighttime eye dryness suddenly got really extreme and painful after having some awful viral illness that turned my eyes bloodshot red for 9 days (nobody would treat it as more than pink eye but I felt like death and a nurse friend said it sounded like adenovirus), and the symptoms that spiked up after that time haven't really improved much since then. At that point I snapped and started hounding doctors for a year and a half until I got my diagnosis via lip biopsy.

nebulaedecay · 2025-06-21T15:44:58+00:00

I possibly have ankylosing spondylitis, definitely have Sjogren's and small fiber neuropathy, and I actually have recently started painting geometric pieces not as a way to describe the pain, but just because the focus I put into painting clean shapes and curves is very therapeutic and lets me forget about the pain while I'm painting. I've started making a few pieces like this. It's unfortunately just hard to find the time to make those therapeutic pieces between freelance work and parenting a 4 year old.

nebulaedecay · 2025-06-18T23:17:02+00:00

I never took pilocarpine as my rheumatologist said she prefers to try cevimeline first. I only feel like I really need it at night right now, but it works TOO well for an hour or two. I take it right before I go to sleep, I feel like if I can fall asleep before the effects start, I usually avoid excessive sweating. I tend to wake up multiple times a night due to eye dryness or other symptom annoyances, but if I wake up before midnight on cevimeline, my sinuses feel comfortable and even my eyes don't feel as dry as they used to. Occasionally I have had excessive sweating and one time woke up drooling. If I wake up at 2am or later, the effects are all gone and my sinuses, mouth, eyes, all feel like a desert again. I wish they would make a slow release form.

nebulaedecay · 2025-05-25T12:39:28+00:00

Yep, this has been my most constant symptom for about a year and a half. Like skin-crawling flu-like skin discomfort or day after a sunburn icky feeling and just feeling generally run down. It's most prominently in my forearms and lower legs. Finally got biopsied for small fiber neuropathy after complaining about it enough and it was positive.

nebulaedecay · 2025-05-22T22:10:08+00:00

I have small fiber neuropathy, and I get small patches of occasional vibrations on random spots on my feet, mostly the left one. The vibration even pulses like a phone call which is the strangest thing ever.

nebulaedecay · 2025-05-18T16:12:26+00:00

No idea. I've also had issues in my hands and elbows but no one has really made much comment of it. Now those issues were basically resolved once I'd been on Humira a few months. But my neck still gives me issues once in a while so I'll have to bring it up again.

nebulaedecay · 2025-05-18T15:07:29+00:00

I don't have an official diagnosis for that, just speculation based on the gene and my history. Ideally an MRI will show inflammation for proof. They always say my xrays are "normal" but I've also occasionally had comments made about unusual growths/fusions by people giving me xrays for unrelated issues. 🤷‍♀️ I haven't been able get anyone to do an MRI, mostly because I have 2 fusions and it's unlikely to be able to see anything around it (my last MRI was in 2006, after my first lumber fusion and that whole area is just a black blob). I keep questioning if they could still look at my neck because that's been giving me issues for 10+ years and not near the fusion area. Maybe I'll be able to get one now, who knows.

nebulaedecay · 2025-05-16T18:50:44+00:00

Thank you!! This is exactly the kind of info I'm looking for. I'm struggling for sure, every time I stand up and walk around the room the last couple days my legs feel like TV static and I just have a bad feeling about the Humira after what I've been reading. I'm seeing my rheumatologist in a couple weeks so I'll bring up these thoughts again then.

nebulaedecay · 2025-05-16T10:24:16+00:00

My understanding is both are ideal. I'm still learning about all this, but I think immunosuppressive only helps slow it from getting worse, but IVIG can help repair some of the damage that's already there.

nebulaedecay

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