u/lapatrona8

Hi! I started my first ever PsA treatment (for severe yearlong flare) and first biologic about 2 weeks ago with Taltz.

It was going great as far as experiencing zero side effects until day 12 and then I suddenly developed what turned out to be cellulitis -- rapidly formed hot, fire red rash over injection sights on stomach, 102' fever with sweats and chills, and severe fatigue. It was one of the scariest illnesses I've ever had. My doc said to treat it as a virus and that they'd never seen this reaction from Taltz, but I ignored and went to ER where I was immediately treated for cellulitis with IV antibiotics. It improved massively as soon as the antibiotics hit and I'm still finishing up a follow-on course of those pills.

I've used injector pens for GLP for years with no issue, I know how to sterilize the area and use needles safely, etc. I do see that Taltz lists cellulitis as a side effect with 0.1-1% incidence but can't find anyone mentioning it online.

I don't want to take another injection of Taltz ever, but I know I'll need another medicine option and I'm so anxious about this happening again. Has anyone had severe reaction to a biologic and been fine with another class? Anyone gotten cellulitis specifically and been okay with something different?

I live on a regular residential street in a suburb, with extremely clear home address labelling visible from the street like most houses. I am in fact one of only 2 houses on my street.

FedEx has always been reliable for me, but for the last 3 deliveries they've delivered my package to one of my 2 nextdoor neighbors. These packages are my lifesaving medicine (on ice) and I have no choice in shipper and no option for signature required via my insurance. Like most biologics, it is also not available by any route other than shipment either. I've verified multiple times that the address on the packages is correct, and it is just FedEx misdelivering.

Twice the medicine was destroyed because they left it at the wrong house in the sun. Even though I was watching for delivery like a hawk, they did not even mark it as "delivered" so that I could have immediately called and asked them to retrieve it, or even to go check the neighborhood myself. It's $8K med so when it goes missing it's a whole ordeal to fix with insurance.

How do I remedy this? Why is this happening? Is it a Google Maps glitch? Will a note on my file somehow force them to check the address before delivering?

Really, really stressed over this on top of the illness itself so advice welcome. Thank you!

I've been looking for a more affordable alternative to Chene after Diptyque price increases / quality decreases for SO LONG and I didn't realize it was right under my nose the whole time.

Stick Season from Ranger Station was the only candle I hadn't tried from their lineup because I don't really care about or listen to Noah Kahan...and to be honest I still don't. I found the official description to be sort of ambiguous and I was nervous to blind buy. But I finally did during Labor Day sale because why not? It is dreamy and so very close to Chene. The throw is a bit stronger as well, which is a huge perk.

It's a 10/10 repurchase from me! I hope they never discontinue the collab.

35F desk worker (non active) with a dilemma seeking advice on steps to take to prevent the unwinding of my life and career. It's long but I'm desperate and want to understand if I'm missing something here in terms of the horrible care I feel like I've been receiving from rheumatology field and what other options I have.

Here are the basic facts of my relationship with PsA:

-7 years ago in my 20s, began having weird joint symptoms after norovirus infection -- neck, upper and middle back, legs. Went to many doctors who mostly said anxiety. Saw a rheum who pointed me to a geneticist, who diagnosed Ehlers Danlos hypermobility. Had a full spinal MRI that flagged multilevel thoracic stenosis as unusual finding but nothing else. Symptoms died down around 1.5 years in and I learned to self manage with cane, PT, etc, figuring hypermobility was cause. Only abnormal labs at this time were always elevated CRP (10-15 range, mild elevation) and elevated d-dimer.

-December 2025 I started getting really bad rashes on scalp, in ear canals, under arms. Annoying but not lifechanging. Derm dx'ed with psoriasis and gave hydrocortisone cream. Around same time my dentist during cleaning, unprompted, expressed concern about my lymph nodes and swollen neck, and some oral ulcers I've been getting, and told me I needed a thyroid scan. I did that and it was normal.

-Jan 2026 I got norovirus AGAIN and my wrists started hurting so bad I couldn't pick up cups. Went to ortho who flagged wrist bone erosive scalloping in X-ray of both wrists, said I had RA, and sent me to rheum. This made sense to me because my dad has RA and my paternal cousins have lupus. CRP was mildly elevated at 9, all other labs normal.

- Went to asshole of a rheum who said actually I was totally healthy and who argued wrist bone damage was mechanical. Fine. I booked 2nd rheum opinion to tiebreak the specialist disagreement and waited for soonest appt 6 mo later. Went back to ortho who ordered MRI of wrists, which found TFCC tears in both wrists and "chronic impaction deformity" of radius. Ortho gave me cort injections, 15 mg daily meloxicam, and told me I needed second rheum opinion. All finger joints started hurting too around this time and my thumb is swollen and stuck in trigger finger position. Joints stiff on waking.

-in July, I woke up one morning to both ankles just refusing to work. Went to urgent care ortho podiatrist who ordered MRI that found bilateral edema, tendonitis and tenosynovitis in FHL and PTT tendons. "volume of fluid out of proportion with the joint" is noted. Podiatry ortho refers to rheum as well but will not comment on whether results are consistent with mechanical, inflammatory, or both. I can no longer walk more than a few feet at this point. Went back to first asshole rheum in desperation begging, BEGGING for prednisone dosepak or more testing or something -- and I brought my dad with RA who goes to the same clinic to improve my chances of being taken seriously -- and it did not work.

-Around this time, my back and neck started hurting and I could no longer rotate torso. I started feeling sick like flu every day, low fever every day. Started getting migraines again for first time since first flare. One day developed Raynaud's out of nowhere where even my lips and tongue turned blue along with my fingertips and feet, freaked out and went to ER where they diagnosed the Raynaud's, explained to me that it was not dangerous, and again referred me to rheum. I went back to ER the next week with the middle back pain and stiffness around bra-line making it hard to breathe and they told me daily NSAIDs had caused injury to stomach/reflux, and told me to discontinue. I did and the reflux improved but not the back pain. I took FMLA at this point from my remote desk job because of how sick and fatigued I felt. Once NSAIDs stopped, swelling became more frequent...socks no longer fit, can't pick up small objects like pills with my hands because of swelling between fingers, etc.

-Went to second rheum with photos of all my swelling, MRIs, labs, and a handwritten referral from ortho explaining why my bone damage couldn't be caused by mechanical means even if I were a middle aged construction worker going ham every day. Rheum initially says PsA is very very likely my dx and said he'd give biologic but then my bloodwork came back with CRP in normal range and based on this and his belief also that wrist bone damage was mechanical, he changed his mind. Most he would do is treat skin psoriasis with Skyrizi and see me in 6 mo because "people with psoriasis can develop arthritis at any time and I like to monitor" (💀) -- made clear that Skyrizi is for skin primarily and that it was unlikely to help my joint pain. Asked for joint focused biologic and he was not willing and said that I did not have inflammatory arthritis. Would not order further imaging. Insurance denied Skyrizi. FMLA almost over and I'm worse than when I first left.

This brings me to today, unclear on what the hell I'm supposed to do to be able to walk and use my hands again or not need 3-4 hours to "thaw" my joints from frozen state every morning when pain wakes me up at 7 am and I can't leave bed. PT makes it worse. Massage, steroids and NSAIDs make better.

Could I get the kind of mobility aids that seniors are able to access, and if so, how? If 3 rheums can't help me, who can, sincerely? What other explanation is there for tendonitis in both hands and feet without injury or sports? If anyone has had similar experience and advice for how to improve my quality of life when rheum is not moving the needle, please I would love to hear it! I feel like my whole life is falling apart and am almost in disbelief that no doctors appear willing to help even at this level of disability. I'm looking for steps to take that are in my control to self advocate or improve my condition. Thank you!!

Hi all! I'm new to this and went undiagnosed for 7 years before anyone believed me, and my recent flare has been so debilitating with both ankles and both wrists, plus neck and back swollen that I'm essentially bedbound and for the first time in my life had to take FMLA from my remote job. I'm 35 and very proud of my work...maybe even a workaholic...but also my only income.

I was diagnosed through imaging with inflammatory arthritis by an orthopedic surgeon -- from MRIs and X-rays it is unambiguously autoimmune arthritis with bone erosion and enthesitis, swelling, etc. The jury is still technically out on RA vs PsA until I can see a rheum next month but I started having psoriasis (dx'ed by derm) at same time that flare started and am seronegative so I think it's more likely the latter.

I am so anxious about this waiting and not understanding the disease and how treatment works yet and also being on FMLA for indefinite period of time until I can improve enough to get out of bed. I've read that meds can take months to "fully kick in" but I'm wondering if they typically act faster on the most acute symptoms? How does this usually go for folks? I have liver disease so I suspect methotrexate may not be an option and that's about all I know. My dad has RA, but was diagnosed much later in life and almost immediately after his first mild symptoms...he's controlled by Plaquenil I believe.

I just feel scared about the work interruption and uncertainty and would appreciate any anecdotes. Thank you in advance!

Dealing with a whole lot of emotions as I come to terms with recent understanding that the last 10 years of pain -- constantly dismissed by doctors -- was never EDS at all, but rheumatoid arthritis. I went to so many doctors and finally got punted 5 years ago to a very kind geneticist who dx'ed hEDS. To be clear, I do meet the criteria for EDS/Sticklers type syndrome and beyond hypermobility it explained a lot of congenital issues like Deafness, vision loss, small palate, etc. I treated those as they arose growing up without issue, although having an explanation for why I'm so medically needy was a nice perk.

But I don't believe that EDS has ever caused me joint pain. I am just so, so distressed that I went untreated for so long because no one ever ordered imaging and I'm seronegative. I spent half of my 20s in debilitating pain because the healthcare system failed at every point. My parent has RA, even, and this was all still botched. Got punted around until last option was geneticist and then once I got that dx on my chart it was almost universally interpreted as hypochondria/anxiety by providers. I just couldn't win.

If you have joint pain and are young, do not accept EDS as the dx until truly every test (ie imaging) for arthritis has been done. I've been truly surprised at how antagonistic the rheumatology field can be. I think in the end, the EDS dx hurt me because it serves as a scarlet letter, in my experience, to rheums and other doctors. As soon as you mention it or list it in your chart, you're written off.

I'm looking for any practices *currently accepting patients* in the Pittsburgh area that use either a direct care/concierge model, private practice, or are patient-centric and outside of the traditional UPMC/AHN big systems.

Direct Care Pittsburgh looks ideal but I can see that none of their providers are taking new patients. I am having trouble finding any direct practices not already at capacity.

The doctors at AHN and UPMC et al aren't bad, it just is very clear that they are timed or overbooked. I am looking for:

-Good availability for occasional questions, documentation requests, and sick visits within the week

-30-60 min initial visit and then established patient visits that are generally not rushed

-Pro-science (e.g. pro vax, evidence-based...homeopathy is okay as long as it's not their core approach)

-Willingness to help patients with chronic, complex or autoimmune diseases coordinate care across specialists

Please let me know if this rings any bells! I am fully willing to pay for access beyond insurance coverage because it's turned out to be more expensive burning through copays for useless rushed visits than it would be to shell out for quality care that works the first time. Thanks, American Healthcare! 🙃

PS if you joined a direct care practice from wait-list and have insight about length of that wait, please share!

I have used medical troches / legal rec edibles (other states) for a while but I'm new to RSO. Right now, my dose ranges from 15-40 mg and no matter if sublingual medical troches or legal gummy edibles, I feel effects. 40 mg is highest I've ever consumed and sometimes it's too high.

I'm interested in RSO and purchased Grassroots Full Spectrum 10 mg capsules a few weeks ago. I took a single 10 mg dose the first time and felt nothing. Today I tried 30 mg and again... nothing. I see only praise about this particular product so I'm not sure if I'm doing something wrong or if RSO capsules are unreliable? Is purchasing the syringe and dosing sublingually or filling my own capsules better? Did I get a dud? I'd really love to be able to try different strains with oral med route and RSO seems to be the way, but it's the only totally ineffective item I've tried from our program so far. It's really puzzling me.

Hey all! Recently purchased 3" soft SOL topper for my *extremely* firm 2 year old mattress (https://www.mattressfirm.com/pressuresmart-20-firm-11-mattress/5637368826.p).

I had a 1.5" memory foam topper on for 2 years and it worked fine until this year when I was diagnosed with rheumatoid arthritis. I have always like the firm side of things because it keeps me in alignment but lately I'm having trouble sleeping because my hips and shoulders specifically in side sleeping are feeling too much pressure. I went 3" instead of 2" out of fear that my weight (250 lb) would just flatten 2" completely and negate the benefits, and also because my mattress is so firm.

With the 3" soft topper so far it *feels* a lot more comfortable and definitely helps relieve hip pressure. The shoulders though are only feeling minor relief, it still feels too firm there. I'm worried if I go soft enough for my shoulder I'll lose support on the hip (because weight) and my body will hammock out of alignment.

So I'm wondering if maybe Tulalay might be better? Or 2" instead of 3"? It's not an ultra expensive mattress; at some point Tulalay gets too expensive in queen and I begin to near the cost of a whole mattress replacement.

I am stuck mulling my options without good ability to try them out. I'd even be open to suggestions for mattresses that brick and mortars sell with Tulalay that might give me at least approximation of what it feels like vs Dunlop, etc. Or maybe what I'm needing wrt shoulder pressure relief is just not something a uniform density topper can address with my weight and sleep position, and I should just keep this 3" that I have for the relief it does provide and knowledge that it's the best I can do.

Please let me know what you might do here!

Tldr; do I keep this topper that relieves a lot of pain but not all or is there a better option that can address it all?

I'm looking for recommendations for ingestible *only* options for enthesitis (tendon inflammation pain) from psoriatic arthritis.

And the bonus q: THC has worked for joint pain for me by way of, I think, distracting me rather than directly improving pain. This is what I want. However, with tendon pain flares specifically I've noticed that the morning after using THC the pain is significantly worse. I'm not sure yet if this is coincidence + morning inflammation or some kind of unintended side effect from THC. If the latter, I was wondering if it's maybe a dehydration thing since my dry mouth and eye gets pretty bad from THC? Is that totally off base, or is there something I can do to mitigate? I can't find much mention of this online so I'm still unsure of what I'm experiencing. This is part of why I'd love suggestions for any products that might give relief for muscle pain specifically.

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Thanks!

What options are available when you are months away from rheum visit and rapidly worsening?

Quick background: 35F went into Ortho in January for sudden severe bilateral wrist pain that doc immediately identified as autoimmune arthritis. He referred me to a rheum, I waited 3 months to see one, and then the rheum simply...did not believe Ortho and sent me home. Ortho ordered MRI imaging that first rheum refused to order and this confirmed inflammatory arthritis.

I have now booked *another* rheum appt with new provider. I called everywhere and the soonest rheum slot I could find was early September...3 months from now and 9+ months into the pain onset. I'm on the cancellation wait lists already and taking Meloxicam 15 mg daily.

Not having solid use of my wrists has been challenging but doable. Last week, though, I woke up 10/10 ankle pain and I went back to Ortho to learn I have PTT tear totally out of nowhere -- like wrists, no triggering injury. I'm awaiting MRI to understand how bad and my left ankle is starting to do the same thing. I cannot walk. I am overwhelmed at the thought of being unable to walk or use my hands for 3 months. I'm also alarmed at the fact that it's clearly getting worse fast and the consequences, as in the ankle, could be major surgery. I can't even get care options from the foot Ortho until MRI comes in, and *that* is also booked out to late July.

Is there any kind of urgent care or triaging process patients in my scenario can try? I am near tears every day in desperation here.

Hi there -- just relocated to Pittsburgh/western PA and am looking for any local groups specific to our region. I've checked FB and Google and not seeing anything but holding hope that it might ring a bell for someone in here.

It's been a bummer reestablishing care in new city -- feel like I'm starting the cycle all over again with no one believing in or having basic knowledge of hypermobile connective tissue disorders -- and want to find recs for PTs and the like for ongoing care (not diagnosis, already have it).

I am mid 30s, lifelong EDs. Was mostly restriction growing up but eventually tipped over to BED after grad school and I've truly tried it all. I did Emily Program IOP maybe 8 years ago before my insurance kicked me out after less than 2 weeks (I hate UHC 🥲). I've been seeking treatment for this for 10+ years, basically, and not finding anything that works is the #1 barrier to quality of life.

Have been on Zepbound/GLP-1 since pre-boom, 4-5 years now. It has helped my health but the side effects are not great AND it has done zilch for BED thoughts or eating the way it has others...if anything have just pushed some of the food obsessive thoughts to similar thoughts but about shopping, stupid boomer phone games, and perfumes. I still have BED behaviors, the side effects are not enough to stop it and it's clear to me now that my issue is driven not by physical hunger versus not but by my brain and BED thoughts. Phentermine, when I was allowed to have it for the 3 months doctors will prescribe it, was miraculous. My brain functioned differently and I finally could focus on work. Since then I've become skeptical that maybe I've always had ADHD. But I'm also unusually high achieving so I've never really had reason to be examined or pursue that avenue.

I know that getting ADHD dx is hellish but also I understand Vyvanse is approved for BED treatment. My question is, how do people go about broaching this and with what type of doctor? Did you ask for ADHD or BED purposes? I have a telehealth therapist right now, GP prescribed my long-term SSRI but no psych at the moment. Many offices I see have policies about not prescribing stimulants including Vyvanse. I'm nervous about being seen as a drug seeker. Also nervous to bring up worried about ADHD because I know Tiktok has made self-misdiagnosis a thing and doctors are wary of it. Please share what worked for you if you've tried to access.

I was diagnosed by geneticist with hEDS about 5 years ago after general pain in my legs and torso -- symptoms aligned more with Sticklers but genetic panel was clear and so this was the dx. It is unambiguous that I have congenital connective tissue something or other so this works for me.

After dx I understood things a bit more and self-managed well as needed. Fast forward to December 2025 and I suddenly have bilateral ulnar wrist and finger pain. It's so severe I can't lift a cup, so I see an ortho who takes an X-ray in office, walks in, and tells me I have inflammatory arthritis and need to see a rheum. This makes sense to me because my dad has RA and the onset is so sudden. But when I went into appt I fully expected it to be EDS related and was hoping for a splint rec or something.

3 months later I see rheum, he does his own X-ray and says it's clear and that there's nothing wrong with me. As usual, all rheum markers negative except high CRP. In this time, my ankles, feet, toes on both sides have also suddenly both started hurting in same way and giving out along with all first joints on both hands, feels like they've been smashed with a hammer and I'm getting skin pain around arms and wrists.

I go back to Ortho and he says, I don't know what rheum is talking about, it's bone erosion. He shows me an X-ray on the tablet compared to normal and it certainly *looks* like my wrist bone is wack but I again have no radiology literacy to understand how clear it is to experts whether bone features are inflammatory or mechanical. I am in a spiral because I can't read x-rays and don't know who to believe. Ortho orders wrist MRIs for next month to help clarify and I'm anxiously awaiting those. Meloxicam helps but only if I take daily 15mg and I'm wary of that as a permanent solution because of stomach side effects.

I don't know which way is up because of this ping pinging between doctors but daily pain level is SO much worse than it was November 25 and before and it's like it was a switch. I am only 35 so I want to ask the EDSers here if it's ever typical to have hand and ankle symptoms like this that are SUDDEN onset around this age as part of EDS aging? I've never had finger/hand pain myself but obviously know that's a thing EDS folks experience. The pain doesn't relate to movement, is at rest, and is worst at night and when waking up at which point I am stiff and need to "thaw" as I say. I am using a cane to help my ankles.

Please tell me if this aligns with your experience! I always imagined EDS to be more gradual and triggered by movement.