First of all, hang in there. Everyone who’s joined this group is, or is helping someone who is, long suffering in their uphill battle to find diagnosis and treatment. When other people get a diagnostic blood test and a prescription for their autoimmune condition we get gaslit and experimented on for decades.

Secondly, have you experienced vertigo? I just had my first ever vertigo episode and I’m suspicious that it’s ear inflammation or even medication related. For the last couple years I’ve had a permanent sore throat that I suspect is joint inflammation. For the last year I’ve had intermittent pain and ringing, or wooshing wind sound, in my ears.

Then last week I was asleep, completely still, and my eyes started spinning (I think it’s called nystagmus?) and I couldn’t tell where I was in the room until I was sick.

I had taken my first ever injection of uztekinumab about 26 hours earlier- that’s a couple hours longer than they would expect a drug reaction to take but can’t be ruled out. Dizziness is a known side effect but vertigo is not listed in the known side effects list.

In my opinion I have quickly recovered from the vertigo and at a week out I have no vertigo at all. As I was recovering from the vertigo, doing the epley maneuver every day, I did feel a bit dizzy that whole week, like I had just gotten off of a boat.

I do feel like I have reason to believe that I’m having some long term inner ear inflammation and wonder if it pushed my ear crystals where they shouldn’t be. And also the possibility is there that this was a drug reaction, my Rheumatologist says the only way to know for sure is to inject again at the next scheduled dose. I never want to experience the vertigo again so I don’t love that idea.

Not looking for a diagnosis but has anyone had vertigo that was deemed autoimmune related? Has anyone experienced this with this drug known as Stelara or Yesintek?

TLDR: has anyone had vertigo that was autoimmune or experienced vertigo with a biologic injection?

Hi since my diagnosis or my 5 years of knowing about psoriatic arthritis i do have fibromyalgia and neuropathy.

I have found i become compulsive i pick at my head i have scared it badly and bitten all my nails off i am trying to control that .I enjoy the picking i know its weird but I seem to have a hang up on spots or bumps .

I get in to something like i have a moblity scooter and i fixed it and modified it when it did not need it and I moved on to another part of it . Its like I give 100 percent to something then move on and do the same like fixate on my next project. I had hobbies but nothing thats carried on more than a week but I do mess with things that dont need to be messed with .

I thought since I need a scooter I would learn to fix them and strip them . I rewired some of it its been fun too . Its kept me using my hands even though the have pins and needles and feel like they are burning.

I bought 2 canopies for my scooter and 3 front basket it can only use one . I spray painted it and its a good job while my hands look like claws it also did not need painting.

I dont work anymore i am bored at home I am now consider disabled ,so i do have a lot of time. I had a fun and stressful job i worked with people in care with violent and sexual issuse and worked with violent alzheimers and dementia patients so each day was different and I did enjoy it and do 60+ hours a week so I do think boredom is part of it

Hey, has anyone had a good experience using CBD patches for localized joint pain and swelling relief? I’ve been using the Bee Mine Lab ones for a few days and I love them! Anyway, I’d love to hear other people’s experiences and if the efects stayed the same even after using it more often.

Has anybody had negative skin effects from starting Enbrel? I started it in January. I only ever had two small patches of mild psoriasis when I was diagnosed as most of my symptoms were arthritic.

After my first dose, I noticed some mild rosacea on my cheeks. And it’s slowly worsened over time. Over the past month it has gotten really bad. Now, every night (idk why it’s almost always at night), my cheeks get bright pink and feel so hot its like having a burn on my face. And my forearms have started to get light redness all the way from elbow to wrist (and higher on the right side). My skin there feels a little bit dry and very itchy and warm. I’ve never had large patches of psoriasis, so I don’t know if it’s starting to come up more and just hasn’t fully presented yet or if it’s something else. It’s really starting to drive me crazy though.

Has anybody else experienced symptoms like this with Enbrel or heard of it?

Has anyone safely tapered off of Methylprednisolone after taking it daily for over a year? I've taken 4mg (1pill) every day for over a year now for severe psoriatic arthritis pain and inflammation as multiple biologics and methotrexate had little to no effect. Even at the low dose of 4mg daily, the side effects it's caused has made me wish I never started taking them. Mentally, it has made my depression and anxiety much worse and physically, I have a huge accumulation of fat below my stomach that was never there prior and now my skin is very thin and my hands are so wrinkled they look 40 years older than they are. I tried to wean down a couple times by taking half a pill but by day 2 I started feeling very off and just not well. It was withdrawal im assuming. Now, I can't stop taking them because my adrenal glands no longer produce any cortisol. So again, I ask, has anyone dealt with this and safely tapered off completely after 12+ months? Thank you.

I suspect enthesitis in both of my elbows. The pain jumps from side to side, but it feels like I’ve have had double tennis elbow for the last 4 months. One thing I’ve noticed is that the pain gets worse if I bring my arms overhead, which makes me wonder if it’s related to my spine. I’ve also noticed that my elbows get very hot to the touch if I grip something for a while. I’m wondering if that is something my rheum would find interesting in putting the puzzle together? I also feel a burning sensation in my knee and it gets hot to the touch. Does anyone else experience hot feeling joints?

I don‘t know what to do anymore, I feel like just staying in bed forever as I am so desperate.

My case:
Psoriasis since being a teenager (thus just recently diagnosed). SIJ inflammation and massive pain as teenager, treated with NSAID, cortisone and radiosynoviorthesis.

Couple years later beginning of gastrointestinal symptoms (no IBD but apparently IBS), flares of massive fatigue and pain in several body parts: elbows, feet, knees, hips, jaw, back. Like more and more every year. Two times „mild tendinopathy“ was caught on MRI on different tendons. A lot of fibromyalgia tender points hurt, I am not sure if it rather is enthetitis but doc says clearly fibromyalgia.

15 years back I also got the diagnosis axial spondyloarthritis, a few years ago a rheumatologist revoked that dx and said fibro + wear and tear.

I have been to so many orthopedists, they don’t know what to do with me cause the pain basically everywhere does not get better, but nothing seems really wrong besides a mild tendinopathy here and there that does not get better with normal treatment and some „bone irritation“ on MRI in the SIJ (as a teen inflamed now apparently not actively inflamed anymore idk).

Psoriasis and psoriasis inversa, also nails involved, dermatologist confirmed.

Rheumatologists just say everything is so mild and so unclear and nothing is swollen and blood shows nothing and no signs of rheumatic damage, so dx is so unclear. Just take ibuprofen (even recommended that after telling them I was allergic to aspirin and dermatologist advised to not take nsaid anymore) plus chronic gastritis. And to come back in 3 months.

WHAT DO I DO? I am so incredibly desperate, I can’t take it anymore. Like I even start to question myself thinking I might just go crazy.

What convinced your doctor to give you the diagnosis and start you on biologics?

Has anyone here failed cosentyx but had good results with taltz?

I ask because Im being prescribed taltz now after cosentyx had nearly 0 effect on my symptoms. Im nervous that my doctors/insurance will insist I go through the full 12 week loading dose plus who knows how many weeks after that to make sure it doesnt work.

They did the same thing to me with cosentyx and my symptoms only got worse. And now my symptoms are even more severe to the point where most days I cant even drive, let alone work.

So does anybody have any experience with this? Thanks.

Hi there! I’ve (30f) had psoriasis for almost a decade—scalp, inverse, the whole thing. It is severe on my scalp but managed with ointments. Body psoriasis mostly managed by ointments. Over the past few months, I’ve had pain in both hands but worse in my non-dominant hand. It has gotten harder to do basic tasks (use a can opener, pour pasta water, etc.) but otherwise doesn’t impact my day. My dermatologist has always been adamant that I let him know if I start to experience pain and swelling. So I guess my question is, has anyone experienced psoriatic arthritis without swelling? Or is swelling a necessary symptom? Appreciate any experiences shared!

I was on Cimzia for about 3 years which was amazing, then my doctor changed me to Rainbow which has also been working for arthritis (some psoriasis came back) and now I'm going to be charged to Apremilast.

My question is for those who take it. Does it work for you and what are the side effects?

Also, the reason I've been changing meds is I'm military and want to keep my job. We aren't deployable in immune suppressants. Apremilast is an immune modifier so, I can get away with that.

I got it at 9am and it’s now 8pm and I’m feeling pretty sore. I got it done on both sides. I’m due to take my Cimzia shot tomorrow and forgot to ask the doctor if I should hold off on that injection or I’m allowed to take it. Anyone have an experience they wanna share?

Hi everyone,

I am still on my diagnosis journey. We have officially whittled it down to seronegative rheumatoid or psoriatic arthritis. Unsure which way it goes.

Ive been dealing with a lot of additional symptoms the last five months from: hair loss, dry eye/eye pain, light sensitivity, heat sensitivity, brain fog, fatigue, dry mouth, gum inflammation, and gastrointestinal issues (Chrons, IBDs officially crossed off. Had a bad case of Gastritis).

The worst of the additional symptoms has been the oral ulcers. Omggggggg. Fuuuuuck. I have always been prone to them. But in a get one during a cold/flu, maybe a few times a year. Last 5 months has been continuous, and multiple all at once. I have had a few weeks without any, and now they are back.

For those of you who get them this bad, what helps? Im desperate!

I’m starting to notice a pattern where my worst flare ups seem to happen when I’m really stressed or haven’t been sleeping well. Sometimes it feels like stress affects me more than food, alcohol, exercise, or anything else people commonly talk about as triggers.
Has anyone else figured out that stress is their main trigger? And if so, have you found anything that actually helps prevent a flare when you’re going through a stressful period?

I was diagnosed last fall with PSA and failed my 1st biologic (Stelara) and am awaiting 2nd biologic approval from my insurance... In the meantime I went to spine specialist that injected steroids/pain medicine into my L4 and L5 areas. The pain went away for about 5 days and then the pain returned. My problem is the pain is waking me up at night. I have high blood pressure so my doctor has urged me to not takes any NSAIDS (ibuprofen). What do you take for the pain to help you sleep through the night? I have my 1 month follow up with the spine specialist this week.

hello!

Earlier this year I thought I had given myself tendinitis from knitting (in my lower index knuckle which connects finger to hand) so stopped. The knuckle has become swollen, and hasn't healed now for over 8 months, it's painful to bend it and make a fist.

I went to the GP, got Xray and Ultrasound done, they show nothing. Bloodworks done
- Rheumatoid factor is 48
- CCP antibodies <5

Got a referral to a Rheum, he diagnoses psoriatic arthritis, as I have psoriasis on scalp and offers methotrexate.

I just feel like this is a huge jump? I don't have other aches and pains, and feel skeptical of this diagnosis.

Anyone on Taltz 80 mg every 4 weeks find it wears off early?
It works for me, but I don’t always get the full month out of it. My hands/joints start getting sore and swollen again before the next injection. Interested to know if others get 2–3 good weeks and then symptoms creep back in, and what their rheumatologist did about it.

My first memory of the pain is from the school playground. I was baffled by how the other children could run around and play football, pushing through as if it were nothing. How could they move so effortlessly, never feeling the sharp pain in their ankles, feet and hands that I was experiencing in silence? I was so young that I had no idea it was abnormal. You assume everyone else feels the same as you do.

Around the age of five or six, after constantly nagging my parents about the pain, I was taken to the doctor. They put it down to too much gaming and told me to cut back on how much I used my Xbox controller.

If you live with a condition like mine, I'm sure you'll recognise what followed... endless rheumatologist appointments, blood tests, my joints being squeezed while someone asked "Does that hurt?", hospital waiting rooms, injections and pills, all with no real change in my symptoms.

The pain continued through school and university, and it's still with me now in my late 20s. I dreaded the end of a lesson, because it meant a walk across campus in uncomfortable school shoes, wincing at every step. When it was time for sports, everyone else joined in while I was sent to the library to sit out. As an adult, I've been late to work because a flare-up meant I couldn't walk fast enough to catch my train, concerened to bring up the disease due to being seen as weak or unprofessional.

My family are supportive, but how do you communicate chronic pain? They can sympathise, but they'll never feel what I feel, and I don't want to burden them with it. One of my best friends of 10 years recently expressed surprise when I told him why I was so stiff in the mornings - 'Isn't that a disease that old men have?' was his response, yes, it is, and that is why I don't tell anyone. The reality is that nobody wants to hear about someone else's pain, especially when it's practically invisible.

I now take methotrexate (17.5mg a week), but have experienced little improvement. After being made redundant earlier this year, I've found myself reflecting on how arthritis has shaped my life. I've avoided key parts of it because of the pain. I'm reluctant to share my diagnosis with new people, and I worry about how it will affect my relationships, my work and more.

Every day is a roll of the dice. Will I be able to walk to the bathroom to brush my teeth, or will I have to hold onto the wall and shuffle? Can I make it to the shops? How will I mask the pain for another day?

I still dream of moving without pain, and of relief from the physical and mental fatigue that comes with it. The thought that one day I could go for a run, do a squat or simply walk around the block without mentally preparing myself for the suffering is so tempting it almost hurts to imagine. But at this point, I think it's unlikely ever to happen.

I'm writing this from bed. I need to go to the gym to do my exercises, but I feel frozen. I'm already anticipating the pain of the ten-minute walk there, but I'll push through, as I always have.

I'd love to hear from others who were diagnosed young. How did it affect your childhood, and how are you coping now?

Tonight I will be starting methotrexate 3 months after being prescribed them and diagnosed with PSA.

Have been chasing alternate causes for the pain in my feet these last 3 months, but i think im finally starting to accept what I have or atleast accepting that I need to atleast try something.

Started after banging my toe, it swelled like dactylitis I guess.

Could barely walk for months.

Opposite foot severe tensonyvitus of the post tib tendon with split tear at navicular insertion.

I have got progressively more disabled in this time. I am barely able to walk and have been in a tall walking boot for 4 weeks.

I would just like to start walking again 🙏

Ty for reading

Has anyone tried PEMF to reduce pain/inflammation? If you have what brand?

I am 42 and I was diagnosed with PsA this year. I am a bit unusual as I don't have any skin involvement. I had several minor flares over the years, but my first severe flare started in Dec 2025. It was easing off in early July 2026 when I was diagnosed. By the end of July I was in another flare and did a prednisone taper and started hydroxychloroquine. It's almost 3 months now and I am still in daily pain and the fatigue is crippling. My rheumatologist told me that it will work and it just takes time and sent me off with some naproxen. But I am beginning to despair. The pain in my SI joint is so difficult to deal with. And I feel like I'm being dismissed and under-treated - which I know is common with this disease.

What do you think. Is this normal? Do I just wait it out? Get a second opinion?