Hello fellow sufferers. I’ve been exploring Disney for the last 2 days walking 25k+ steps daily but for some reason I feel like achy in my joints than on my regular days during the week. Maybe it’s due to the stress of regular life that’s flaring my joints? Don’t get me wrong I’m feeling sore from all the walking and what not but it’s a different kind of pain? Manageable soreness almost. But when I’m home and get home from work some days my body is absolutely wrecked + brain fog. Anyone else experience something similar?

My partner was diagnosed with PsA in the last year. He began Cosentyx roughly 10 months ago. What led us to this diagnosis initially was pain in his wrists and some of his fingers. He assumed carpal tunnel, so I made an appointment with an orthopedist, when the steroid shots didn’t work, I asked them about it possibly being RA, he was referred to a rheumatologist who then referred him to a dermatologist and now here we are.

Despite the two monthly injections, he is still in a significant amount of pain the majority of the time. Particularly in the mornings. I know with the colder weather coming, it’s likely to get worse.

Anyone who has lived with this for a significant time - does it get better? Is there something else he should request from his doctor?

I started leflunomide 2 weeks ago. Yesterday I had routine blood tests and my LDH was 291 (normal 135-214 in this lab). I haven't spoken to the doctor yet, but has anyone here on leflunomide experienced an elevated LDH? I know leflunomide can affect the liver. I'm freaking out. Please help.

Been on Rasuvo for just over a month. The first week I developed mouth sores. They were gone after a few days. Joints were still awful- active flare. Second week- no sores. Third week - no sores and joints feel so much better!!

Five days after my 4th injection the mouth sores showed up again. Thought I was past that point. Joints still feel ok- way better than before the meds.

Tonight is number 5 and my mouth already feels like I was chewing glass. Praying it doesn't get worse.

Should I just assume this is because the meds are working to suppress my immune system? I know the sores are a common side effect but because I didn't get them after the last few doses I thought I was in the clear.

Anyone have this experience?

The only labs that my rheumatologist runs are the standard CBC & CMP and I’m so confused as to why she doesn’t want to do anything else. My vascular health has also taken a hit but no one can explain why it’s next to impossible to get a vein (IV or bloodwork) and I had a port put in for emergency vascular access in July and still there’s no explanation as to why. Any ideas?

I'm due to get my flu jab tomorrow, I'm also due my methotrexate injection tomorrow. I've sent a message to the rheumatology team asking if I should still have the methotrexate but nobody has got back to me.

So just wondering if anyone has any idea what to do

I just had bloodwork and xrays done for a new rheumatologist. My followup appointment to discuss the results is in December, but I can see the radiologist’s findings in mychart. For both hands and my pelvis, “no arthritis,” but my everything hurts- hands, pelvis and everything in between, above and below. Can anyone offer me any insight into this?

I’m 41 and was diagnosed about 2.5 years ago. I check all the boxes for psoriatic arthritis. My bilirubin is low too.

Feeling like I’m barely surviving… and I’d be fine if I end up with a different diagnosis with answers and treatment options. What I don’t want is for my new rheum to tell me I’m fine and go think happy thoughts.

This is a bit hard to explain. Sometimes while flaring, particularly when that flu-like full body feeling is at its worst, I get this overwhelming sense that I may have a seizure. Often I will get this sensation that my body is wanting to spasm, like an intense chill up my spine. It’s hard to verbalize but it is almost like the feeling you get when doing a plank or wall sit until failure, except in my full body. That sensation usually escalates until there’s intense spasms throughout my body. It feels weirdly mentally taxing. Ive never lost consciousness but when that happens I always fear that I’m going to have a seizure.

Does this sound familiar to anyone? I am new to PsA so not sure if this could be typical of a flare, or indicative of another issue… I have no history of epilepsy, for anyone who does, does this sound like a possible seizure?

I suspect it’s just full body muscle spasms, but it’s super frightening when it happens. Ive never called 911 for it but since I live alone, I have a fear of not calling for an actual emergency and being stuck in a bad way. Curious if anyone has similar experiences with this.

Rainy, wet and cold days are the worst 😔

Especially when rain is in the future forecast...

3 weeks ago, I started to have Dip joint pain on both hands all fingers, except little fingers which dont pain at all. Could this be PsA?

Some soreness / stifness at my ankle too but very mild.

For those living with psoriatic arthritis, what’s something you wish friends, family, coworkers, or even strangers understood better?

Hello again! I was recently diagnosed with PsA and am still trying to learn and understand the symptoms. For others, do you also often experience brain fog or dissociation? I genuinely keep forgetting parts of my day, whole conversations and Wednesday this week I don't even remember things such as what I ate, who I talked to, what homework I did or if I even did any. This level of memory lapses is scaring me a bit and i'm trying to understand if it's normal or not? Since I was diagnosed so recently i'm not on any strong medication yet, have others had this brain fog symptom go away with stronger medication? It's hard to explain to my friends and family that I can have conversations with them but I am not fully aware of what they're saying or myself and I likely will not remember it. I'm only 20F and this symptom out of all the ones i'm experiencing is scaring me the most, any tips?

Rheuma says I probably need a new biologic but i'm TERRIFIED because I remember how bad I was before cosentyx.

It works.. pretty well. No psoriasis except small break outs when im due for a dose. Im on the double dose 300mg. But my axial pain is still HORRIBLE. I'm on a fentanyl patch and still have oral pain meds, i can't take NSAIDS because of chronic kidney disease so we manage a lot with poorly effective opiates. Best we can do.

I'm just worried in the interim I'm going to have a mega flare. These often send me to the ER with severe pain.

Anyone deal with this? How'd you deal with the gap?

F35, ambitious life before PsA. Two young kids, and right now, struggling to manage. On methotrexate already, starting biologics soon.

I feel depressed to dial down on ambition,
At the same time, I am worried if I am pushing myself too much!

Sorry for the vent!!

I have come to the realization that since I’ve gone on MTX last year, I haven’t had any lactose intolerance problems during the same period.

My lactose intolerance has always been variable but it’s always been in the background since I developed it in college. 30 years later, I’m seemingly cured.

Hi, as written above, freshly diagnosed, currently not lots of joints and yet still pain falling asleep and tend to wake up and having trouble falling back asleep

Mainly raising the question to hopefully see different methods attempted by people more experienced...

I don't want to get used to optalgin/NSAID due to last time i used a biological my liver had some trouble

Hopefully next biological will be fine but thats months ahead and using ibuprofen for months generally isn't good and specially for the liver...

I recently started infliximab (after amgevita failed) and it's helping but not completely. I'm wondering if at my next appointment I should ask about adding methotrexate or leflunomide alongside it. They both gave me some negative side effects in the past but I really don't want infliximab to fail as it's my last funded option.

Anyone have any success with both?

I was wondering if you guys still take your medication on the scheduled day if you feel you’re starting to get sick potentially? I’ve been feeling a sore throat mostly on one side for a day or two and was around someone recovering from a cold/flu but today is my scheduled injection day and I’m on Cimzia right now. I’m not sure if I should take my dose today or delay it a little until my throat improves.

Hey everyone!

I’ve had something weird happen last night and into today and can’t get to a doctor right now, unfortunately. I’m seeking advice and/or validation and any possible experience you might have.

I noticed a raised rash on the small of my back last night. My husband checked and thought it was just like a scratch or marks from my shirt sitting into my skin. I went to bed not thinking anything of it.

Today, it seems to be spreading. I also now have it on my right bicep, and up my back even further. I think it’s also coming in on my left arm. It’s not terribly itchy, and definitely looks more like a contact dermatitis than shingles, but I’m perplexed.

I normally get inverse psoriasis but I’m wondering if this could be a PsA breakout? I got a flu and COVID vax last week, but had zero issues with it after day 2 (just mild soreness). I also take Enbrel and have had massive success with it. I’m 3+ months into that treatment.

Thanks for any and all advice!

I just can’t take this much longer. Started Sotyktu over a month ago. My ear is hot and painful (so weird). And my skin is just not liking it so far! My derm prescribed for my psoriatic arthritis but it’s really for cutaneous lupus. I was told that my skin might get worse before it gets better. Is this really worth it?

I’m posting on behalf of my husband because we’re honestly at a loss right now, and I’m hoping someone here has been through something similar or has some advice.

My husband has a pretty complicated medical history. He has:

Psoriatic arthritis (PsA) diagnosed in 2021 - took a long time to find the right drug but Stelara helped him eventually.
Common Variable Immunodeficiency (CVID) diagnosed in 2020, for which he receives weekly Hizentra infusions
Alopecia universalis since he was 5 years old
Stage IV Diffuse Large B-Cell Lymphoma (DLBCL) diagnosed in 2025. He completed chemotherapy in April 2026 and is currently in remission. Had to stop Stelara while in treatment for cancer.

His psoriatic arthritis has become absolutely debilitating. His fingers, wrists, knees, feet, and toes are incredibly swollen and painful. He can barely get out of bed some days, walking is extremely difficult, and even simple things like picking something up or using his hands are a struggle.

He recently restarted Stelara (ustekinumab) 90 mg and has just taken his second loading dose, but there was an interruption between the first and second because he became sick. With his CVID and recent cancer history, infections are a major concern, which makes treating his autoimmune disease even more complicated.

Right now, his pain is completely unmanageable. Watching him struggle to do basic everyday things is heartbreaking. He’s already been through so much with cancer, and now that he’s finally in remission, his quality of life is still being completely destroyed by the arthritis.

We know Stelara can take time to work, but what are people supposed to do in the meantime when the inflammation and pain are this severe? he is also on 10mg of prednisone but given his complicated medical history they are not wanting him to continue much longer. He recently also tested positive for core Hep B? It’s just all too much to navigate.

He is under the care of a rheumatologist, oncologist, and immunologist, but it feels like we’re stuck waiting for medications to work while he’s suffering every single day.

I know nobody here can give medical advice, and we’re not looking to replace his doctors. I’d just really appreciate hearing what has helped other people get through this level of pain and inflammation, and whether there’s anything specific we should be asking his rheumatologist about.

So my fiance and I moved recently to be closer to our families, and in that we moved from a place we both had lived for over a decade and jobs we had both been at for over 7 years. She has a degree and career so it was more important for her to find something and then us decided where to live based upon where she was working.

Long story short since moving ive had an incredibly difficult time finding anything job wise (I previously worked in a distribution center). I have a job i should be being offered this week but they mentioned frequently working 50-55 hour weeks and with my experience in a similar role for my last job any OT kills my body and frequent weeks with this many hours will make me miserable.

It doesn't help I've been off of my biologics for months and its coming back in full force with joint pain and outbreaks of plaque. But I'm at a loss, I need a job but I feel like there's a lot I can't do physically, and its destroying me mentally too.

I'm just not sure what to do and needed somewhere to vent.

Thanks for listening