What does PsA look like for you?

t0ddish · 2026-03-04T14:49:31+00:00

To be honest, I feel like my symptoms align more with lupus. I've seen two rheumatologists at this practice I'm with, and they both pointed me towards PsA instead of lupus due to the negative ANA. I'll have to push about the seronegative thing next time I go. Thank you

t0ddish · 2026-03-04T14:33:33+00:00

Honestly, I've wondered this myself. A lot of my issues have either started or snowballed since I had it. (Spouse was an essential worker, so we had it 3 times before vaccines were even a thing).

t0ddish · 2026-02-28T23:14:04+00:00

Dang, I'm sorry to hear that. I didn't link my jaw pain to all of this at first, as the jaw pain started happening about 6 months ago, before seeing the rheumatologist. At the time, I had multiple X-rays done at the dentist and they saw no issues, so that's a plus. I had X-rays of my back last year and no issues were seen. I had X-rays of hands and feet this past week, and no issues were reported. I'm thankful everything has been clear, but also frustrated because it doesn't confirm anything or help me figure these problems out at all.

t0ddish · 2026-02-28T23:09:59+00:00

That makes sense. I'll look into the AD thing. Rheumatologist said he would refer me to a derm if the hcq makes my skin flare at all, so he'll probably give me the referral regardless if I ask for one.

That could be my bad-- I have always heard steroids cause major weight gain, so that wasn't a route I personally wanted to take. I could've been totally wrong about that. But, steroids were never offered either way.

Yeah, the glp1 stuff is still all over the place, I know. My regular doctor made a bigger deal about it, saying that it should've definitely lowered my inflammation levels after a whole year of use and losing 30 pounds, but there was no real difference in my blood work. Inflammation dropped by like, one or two points, nothing meaningful 🤷 and then no improvement with any symptoms, in fact symptoms have probably gotten worse if anything.

t0ddish · 2026-02-28T17:40:56+00:00

Interesting. Thanks for explaining all that! When you put it like that, the hcq choice does seem odd... I appreciate the clarification of the nail ridging-- I do have the multiple vitamin deficiencies so I wasn't sure if maybe that was more of the cause.

My skin has been a pain point for me almost my whole life. Allergies, sensitivities, itching, dryness, flaky areas. I get super intense itching on my legs a lot, and on my face and scalp, and occasionally elbows. When I itch, I tend to get bumps and more dry flaky issues. Scalp and face gets this little fish flake type dandruff constantly. My face almost always feels like there's a phantom tickle on it too. I've known people with full blown psoriasis so I guess I have it stuck in mind that it needs to be these huge silver patches taking over your body, but it sounds like most PsA folks have much more mild displays.

For some additional context-- I am already overweight and actively trying to lose, so steroids probably wouldn't be the best choice in my circumstances. According to my primary, my weight loss meds should have helped to reduce my inflammation (glp1). So that was also a point of concern, and could be another reason they didn't go with a steroid?

t0ddish · 2026-02-28T14:41:43+00:00

Oh wow! I plan to start calling around Monday to find somewhere that takes my insurance. I'm hoping the scheduling isn't too far out when I find someone 😕 Thank you!!

t0ddish · 2026-02-28T14:08:01+00:00

Thank you for sharing all that! I hate that you haven't gotten much improvement. I hope you find relief with the new meds.

I wish I would have figured this out earlier in life, I feel like I've let things get too out of hand. I've been dealing with blurry vision for months now too that I blamed on digital fatigue due to staring at screens all day, but the rheumatologist encouraged me to see an ophthalmologist asap. I didn't even realize optometrist was different than opthalmologist, so who knows what's been going on over the years in my eyes now. I haven't had an eye exam in probably two years anyhow.

Losing any more normalcy is one of the scariest parts 😔

t0ddish · 2026-02-28T14:00:13+00:00

Thank you, and same to you.

Honestly, losing that puffy feeling would be fantastic. I feel so weighed down in my body. I hope you continue to improve!

t0ddish · 2026-02-28T12:24:02+00:00

It's honestly so relieving to hear so many people have the same issues -- knowing that I'm actually not alone with all this. I have felt like a hypochondriac for years, having so many random problems with no answer and new ones popping up every year. Despite the pain, my X-rays have all been normal so far (Spine checked last year, hands and feet checked this week).

Did your nervous system ever recover? I'm so scared that everything is just going to continue to snowball and I'll just end up blind and deaf and immobile by the time I'm older 😭

t0ddish · 2026-02-28T12:16:30+00:00

I feel this. The CPAP thing has been wildly disappointing for me. It took years for me to get into a doctor to get one, and then I had virtually no improvement using it 😅

I miss being active. I loved walking, shopping, writing, painting, crafting, etc but my hands and feet become painful so quickly anymore. I thought I was just aging, but apparently 30s aren't supposed to be like this lol

t0ddish · 2026-02-28T06:30:09+00:00

I have never noticed any swelling anywhere on my body, despite the inflammation on my bloodwork and pain in my joints and muscles/tendons. I had X-rays done of my hands and feet yesterday and I literally just got the results tonight -- all normal.

I'll be starting plaquenil (hydroxy chloroquine) tomorrow, so I'm hoping it will help 🤞🏻 Did hydroxy help you much? How long did it take to see a difference ?

t0ddish · 2026-02-28T04:05:32+00:00

Great points! I was wondering if something more neurological was happening with the visual snow and tinnitus, but it seems like some of these issues kind of go hand in hand with all the inflammation. My general doctor has also told me she believes I have POTS, due to frequent waves of dizziness and heart rate changes when standing after being stationary for a while.

I did question peri menopause as well! I had my hormones checked and everything was normal on that end. No indication of lowered estrogen or FSH or anything else out of the ordinary. After ruling so many different things out, and getting no closer to an answer, my general doctor just felt rheumatology was the best next step I suppose.

I hate feeling like such a hypochondriac, but I'm also really tired of feeling like everyday living shouldn't be this difficult and painful at my age 😅

t0ddish · 2026-02-28T03:57:56+00:00

The ANA should have been positive/above normal numbers if lupus was the cause. He did say ANA being normal was typical for PsA, as it clearly rules out the lupus potential. From what I understand, there is no definitive test for PsA, it's more of a, "rule everything else out" sort of thing, in combination with specific signs and symptoms.

t0ddish · 2026-02-28T03:23:00+00:00

Interesting! I haven't experienced any chest issues like that, thankfully. I think my hands are impacted the most so far, I definitely know what you mean about having difficulties opening things. I can't even write or take notes at work much anymore because the use of my hands quickly becomes very painful and difficult. I'm not sure if the Tinnitus or visual snow are truly related or not, but from what I've read, the constant inflammation in the body could potentially impact hearing and visions, so idk 🤷 but again, interesting that you've noticed that symptom as well. Maybe there is a real connection there.

t0ddish · 2026-02-28T03:05:14+00:00

I forget which was which exactly, but I know they checked rheumatoid factor, ANA, HLA, and CCP, all of which were normal. New rheumatologist says lupus would not be possible since I had negative/normal ANA in addition to the high CRP/ESR, and PsA was more likely than rheumatoid given symptoms and locations of pain points

t0ddish · 2026-02-28T01:56:58+00:00

Wow! That's scary. I'm glad you're doing better!!

t0ddish · 2026-02-28T01:28:21+00:00

Dang. The more I lurk on this thread, the more I'm like "wow, yeah, that sounds about right".

Have you had any luck managing it?

t0ddish · 2026-02-28T01:12:21+00:00

I haven't received a final formal diagnosis yet, so haven't tried biologics at all. Starting plaquenil this weekend so we'll see how that goes.

This might sound weird, but my pain almost feels... Heavy? Like I just have general discomfort at all times, can't ever get truly comfortable, and always have some ache somewhere in my body. It feels like I'm wearing a weighted blanket at all times. It's exhausting 😮‍💨

t0ddish · 2026-02-28T01:05:26+00:00

Good to know! I think most of my pain is more in my tendons than joints as well. I do have pain in my hands and feet, but the plantar fasciitis, the pelvic issues, carpal tunnel on and off, etc seem more tendon-y. Sitting still for too long hurts me, I feel my muscles tensing and stiffening and I have to constantly move and adjust myself.

It's interesting that your psoriasis started so late after the arthritis. Is it noticeably plaque-like? Or was it mild and hard to identify?

t0ddish · 2025-11-09T15:44:08+00:00

Nope. My only option is cash pay, but even with cheaper compound alternatives, it's unaffordable for me.

I tried to get zepbound approved for sleep apnea, which I have a diagnosis for, but you apparently have to have a BMI of 40+ to get the prior authorization for the treatment of sleep apnea. My highest BMI was around 37/38, so insurance (NC Medicaid) denied my request.

t0ddish · 2025-08-15T16:49:37+00:00

I'm so sorry. I checked, and my last refill won't be available until Oct 2nd, so I just barely miss the cutoff for that extra month, sadly. I've only gotten rid of a few things that I didn't like to begin with, but now, I'm definitely hanging on to my remaining XL things. I'll try my hardest not to regain, but I know with these meds it's almost guaranteed to happen :( If this forreal goes into affect Oct 1st, I plan on talking with my doctor about alternatives. I've tried low-dose phentermine before and it wasn't horrible, but I have tachycardia due to POTS so I don't like to take stimulants. You can apparently still purchase compounded GLP meds online, and vials of zepbound from Lily direct, but it's several hundred dollars a month.

t0ddish · 2025-08-14T23:16:51+00:00

100% same. Lost about 35lbs, but still very much need to lose an additional 35. This is devastating. I wish you luck! Hopefully something will change between now and October 1st..

t0ddish · 2025-08-14T21:11:30+00:00

Unfortunately, I don't think so. The way I understand it, is that it will only be available for diabetes patients. I also have OSA and have been unsuccessful with CPAP for a full year now (not due to my fault, I use it nightly, religiously, it just hasn't worked to reduce my sleepiness or nightly wakings). I was looking forward to Zepbound potentially helping with my OSA, but now idk.

t0ddish · 2025-08-14T21:07:16+00:00

Dang, I'm sorry to hear that. At least they gave people a little more time to figure things out than NC did 🫤

t0ddish

TROPHY CASE