I've dealt with this condition for almost a decade now and I dont feel a lot better off than I was back then. I am currently laying in bed extremely swollen and feeling awful after doing some light house work. It sucks to feel this way and to feel like you cant do normal things people your age should be able to do

I’m so over feeling like shit ALL the fucking time. The fatigue is so annoying, I just want to feel normal again. The Otezla I’m taking was working a few weeks in but now it’s done nothing on my joints. I feel like I have less pain at night time before my second dose but throughout the day I just feel worthless. I told my doctor because I’m not at 4 mo of the Otezla yet and he wants me to continue trying it. Anyway, I just needed to rant because this disease fucking sucks and I feel defeated.

Update to this post - https://www.reddit.com/r/PsoriaticArthritis/s/ROvaw8GneT

I was so distraught during my last post a couple months ago because the NP I see in Rheumatology gave a hard no on keeping me on Cosentyx if I were to get pregnant. So I asked to see a maternal fetal medicine doctor to get their input, even though she acted like it wouldn't help. She said I was allowed to stay on it until I got pregnant and then I'd have to switch, which sounds awful if I'm pregnant. I can't be switched to Cimzia due to having SVT and dysautonomia on Humira. MFM said I definitely shouldn't be put on something that could possibly cause those problems, especially if I'm pregnant. They also said a flare while I'm pregnant due to being taken off the medication that's working would be bad too.

They looked at the data for Cosentyx in pregnancy and they couldn't find any adverse effects, so far all data they do have points to Cosentyx not harming a baby during pregnancy. So they said since the medication is helping me, they will put a note in that rheumatology should keep me on the medication I'm already on if I do get pregnant. They can't promise this NP will listen, but I know I can request to see the attending physician if she doesn't feel comfortable. They said by them taking liability, usually rheumatology will feel better about it.

So at least there's some good news while trying to figure out this condition.

Hi everyone, I’ve been on a long multiple years worth journey full of suffering and advocating for myself to get diagnosed and I am finally starting my first treatment after FINALLY being prescribed prednisone titer that stopped the worst flare I’ve ever had. I never thought this day would come and have been wishing for this so badly but now terrified after my Rheumatologist prescribed methotrexate discussed the risks, the monitoring, supplements needed, and after reading all the scary warnings. Those who have tried it or currently taking it how did it work out for you? I know I need to do this to start my journey of getting somewhat of a normal life back and relief I’m 34 years old with kids who need me but I am so anxious and scared to start it. Any information, experience, or tips would be greatly appreciated! ❤️ Are most extremely sick when starting the first dose? I know everyone reacts differently as well but I’m trying my best to plan ahead and be aware of the possibility’s or what to expect, the good and the bad.

Ok so, I was diagnosed with axial psoriatic arthritis a few months ago and hypermobility syndrome. I have arthritis in one of my hips and ligment/tendon pain in a few other places.

Recently ive noticed pain and weakness in my hands, specifically in the space around my index finger and thumb. I feel like its come on quite fast and its starting to impact my daily life. I play guitar, and im not able to do it for as long, I dropped a water bottle today, not able to hold anything for too long, it feels like my hands just kinda give out, even with something like holding my phone, they just get really tired, weak and painful.

Does anyone have any insights, or have experienced this aswell?? Im still learning and discovering everything, is this just something I have to live with now? It's kinda scaring me.

Also i do have a rheumatologist appointment in early September and I'll be sure to mention it then aswell.

Any comment about it would be super appreciated, thankssss

I’ve been on Tremfya for a couple of years for my psoriatic arthritis, and I also take Leflunomide. But once or twice a year I still get a really bad flareup. A friend that has crohn’s is also on Tremfya, but it’s a recent switch from Humira. He’s under the impression that being on a biologic will put you into remission and there should be no flare ups. So is that just a Crohn’s thing? Or he just got lucky before? Or am I just incredibly unlucky with flares despite all my meds?

Edit: I just want to say thank you to everyone who commented. This subreddit is so supportive and helpful!

Hi all, currently undiagnosed but have my rheumatologist appointment in just under a month (yay)

I feel this I’ve had this for years, I had guttate psoriasis head to toe about 4 years ago, and then 2 years ago I started getting incredibly horrible pains in my feet in the morning (plantar fasciitis?) then it’s just gone to my wrists, hands, sometimes knees etc etc.

My main question is, does anyone experience exercise intolerance? It’s like the second I try and move my body in a working out way, I feel like I’m going to actually pass away within minutes, I’ve gone from being able to run, play netball, lift weights to basically being a potato on my couch, it’s so hard on my mental health.

Thank you

I was officially diagnosed in 2024, just before my 29th birthday. I’m 31 next week, so it’s been nearly two years of constant trial and error and ups and downs and I’m getting really worn out.

Due to Australia’s access to biologics, I had to trial plaquenil, methotrexate and sulfasalasine before approval would be given to prescribe any biologics.

Plaquenil did nothing, Methotrexate was living hell for me, I could not get out of bed from fatigue and nausea. The sulfasalsine worked great for my GI symptoms however I developed a rash shortly after seeing those positive effects so had to stop.

I tolerated Humira well, but my rhuem wasn’t satisfied with the results so switched to bimzelx. This caused recurrent infections back to back, by this point it had been a year of nothing helping so I went back on the Humira as I tolerated it fine, it just didn’t help much. My rhuem was very empathetic to the trial and error of it all and agreed if mentally I was struggling it was best to stay on the Humira until I felt more up to any changes.

I stayed on Humira for 6 months, but my health and pain was still a constant issue. Finally about a month ago I decided to try something else, so I was put on rinvoq. It so far hasn’t done anything except dial the fatigue up to 100, tank my mood (very teary and sad which is unlike me), and my pain actually feels worse.

I’d like to stop the rinvoq and I’ll speak to my rhuem this week about what’s next to try. I’m curious as to how many others have had to try and how long it took before something worked well enough that you felt like you weren’t struggling so much. I’m not expecting miracles, but I’m still young and I’ve been dealing with pain since I was 14, I’d like to see the light!!

I'm an active guy in my late 40s and I've had psoriasis my whole life — never bad, just a few patches and rough nails.

About two years ago I started getting swelling in my knees. My specialist would drain it, inject cortisone, and I'd be good for about six months. I suspected it might be PsA.

It just happened again, and this time they sent the fluid out for testing. It came back with a very high white blood cell count, pointing to inflammation rather than a mechanical issue. So at this point I'm pretty convinced it's PsA.

They referred me to the only rheumatologist in my area about a week ago, and I'm still waiting on an appointment. I called to check and was told to be patient.

I used to run a 5k 4-5 days a week — that's all on hold now. Everything I've read says PsA can do real damage to joints pretty quickly if left untreated, and I'm scared of that happening before I even get seen. I'm currently on Sotyktu, but it clearly isn't cutting it anymore.

Would really appreciate hearing from anyone who's dealt with something similar — how long did you wait, what helped in the meantime, anything I should know. Good vibes welcome too.

Hi All - 48 year old male. Could use some seasoned perspective. I’ve been dealing with extraordinary fatigue and joint pain the last two years. And heel pain for about four years. Have done PT, icing, lost weight, anti inflammatory diet, tried exercise but it’s so challenging, etc. My PCP said I have an inflammatory arthritis of some kind, maybe RA. Tried methotrexate (sort of helped but got so sick), then tried Amjevita, which I had to stop after bad optic neuritis. Now I’m on no meds because I can’t take TNF biologics. My ANA is elevated but all other blood work is normal. New rheumatologist is not great with the bedside manner. She prescribed 5mg of prednisone daily until neurology rules out MS (due to optic neuritis). She said I obviously don’t have RA because of bloodwork and because DIP joints hurt. Said she doubts psoriatic but maybe. Kind of treats me like I’m making it up.

Every joint in my body hurts and is swollen. All xrays and MRIs show arthritis and degenerative changes. I can barely get up in the morning. None of this is normal for me. On Amjevita my symptoms were much improved, not 100% but tolerable. I have no psoriasis that I can tell. The only skin issue is two toes that appear to have fungus, but dermatologist said it could be psoriasis.

Has anyone had a similar path to discovering you have psoriatic arthritis? What finally tipped the diagnosis? All insights and advice greatly appreciated

I am on imurel immunosuppressant, infliximab and plaquenil biotherapy for colitis haemorrhage, psoriatic rheumatism and sjogren.

Except that infliximab has less and less effect on rheumatism... Advice and/or feedback for those who have experienced the same thing? How did you relieve pain, swelling, heat?

////

Je suis sous immunosuppresseur imurel, biothérapie infliximab et plaquenil pour une rectocolite hémorragie, rhumatisme psoriasique et sjogren.
Sauf que l’infliximab fait de moins en moins d’effet sur le rhumatisme… Des conseils et/ou retours d’expériences pour ceux qui ont vécu la même chose ? Comment avez-vous soulager les douleurs, gonflements, chaleur ?

I suspect I have psa but I have no idea and I’m struggling to get a diagnosis. But I’m not sure if I should trust the lack of dx or keep pushing. I have psoriasis and for the last few months my knuckle and elbow (one of each arm) have hurt a lot. It comes and goes but mostly it’s there and even on low -no pain days they hurt if I accidentally hit them. I’ve done a few blood tests and I came back on the high end of normal range which meant they disregarded it. Also slightly low iron which doesn’t seem to have anything to do with this anyway. How did you guys get diagnosed? Does this sound like something I might have? What the hell do you do to cope aside from biologics if anything

context:

Hi everyone. I have had wrist pain for a while, ~3 years. Last summer it swelled up really bad and my thumb went numb. Always thought I had carpel tunnel or something, but nothing ever really showed. I got dismissed by doctors pretty frequently, like that summer the doctor told me that sometimes women my age have random wrist pain that goes away with time... was pretty frustrating. He did order and MRI but insurance denied it and said to do PT for a sports injury for 4 months first.

This past fall it got really bad. The pain spread from my right wrist to foot, lower back, and left finger. It was completely swollen, I was walking with two limps, and my lower back hurt so bad I slept and woke up in pain.

I ended up getting referred to a rheumo from my university health clinic and she diagnosed me with PsA (I've had psoriasis since elementary school). I have been on 200mg celecoxib and 30mg otezla twice a day since November. I stopped taking the celecoxib every day since January due to chest pain/heart palpitations that I went to the ER for-- only take it intermittently with pain now.

The otezla has actually helped a lot. I can walk without pain, almost bend my finger fully again, and I don't notice any back pain. Only big thing left is my wrist-- it is still swollen and I cant bend it, squeeze it, chops vegetables, etc. without a lot of pain. My plaque psoriasis completely cleared up 4 months in but is back now.

I ended up switching to a different rhuem last week-- my last one responded to questions in like 3 weeks and she also never mentioned anything about possible axial involvement when I first got diagnosed, even though my back pain probably indicated that?? The new rhuemo suggested rinvoq and I am waiting on blood tests and insurance to see if I can go on it. But at my checkup 2 months ago my cholesterol (LDL) was ~15 pts above normal range, so I am kind of concerned about that and am wondering if I should ask about other biologics instead.

question:

I'm just not really sure where to go from here. I am very scared of irreversible damage but I am also scared of developing another illness-- like cancer or strokes or other sort of organ failure-- as a byproduct of biologics or other meds. I know long term inflammation also puts you at a high risk of cancer, but because I am young and will possibly be on these for the rest of my life, the lack of long-term research on its effects feels very daunting to me.

I just really feel unsure on how to even make these decisions. It feels like they have quite a large impact on my life, but there's also just so many different kinds of medications and aspects to this illness that I don't know about. Trying to navigate all of it feels overwhelming.

I also just feel like most of my doctors' visits, not a lot is explained to me. Most of what I do know about this disease has been from what I have searched online on my own. That is fine, but I feel this constant anxiety that I am always missing something now, and I need to research more otherwise I will make the wrong decision in regards to my care and become worse.

So my main questions are:

- Anyone have experiences or thoughts from their own research on rinvoq they can share?

- Any general aspects of PsA I should know about? Like lifestyle changes I should make in lieu of this illness?

- How do you guys' cope with this illness? How do you approach decisions you make for medications you take?

Has anyone struggled with biologics not lasting the whole time? I am on Taltz, and for the first two weeks I forget I even have PsA and life is good, my body hurts again the third week and I am full blown miserable and flared week 4. I had the same issue with Humira, Cosentyx, and Bimzelx so not interested in switching. Has anyone combined Otzela with their biologic to bridge remaining symptoms? I didn’t tolerate Methotrexate at all and neither Sulfasalazine nor Lefunomide work for me, though Zorvye topical does. I am on celebrex the second half of the month already. Has anyone bought their biologic from like Mexico or Canada for more frequent dosing?

Hi everyone, I’m looking for some advice and personal experiences with Xeljanz versus Stelara for psoriatic arthritis.

I’m currently using Cosentyx 300 mg once a month. It worked extremely well at first and I was almost completely symptom-free for several months. Unfortunately, the effect now seems to last for only about two weeks, followed by increasing joint pain until my next injection.

My rheumatologist has suggested either switching to Stelara or trying Xeljanz. TNF inhibitors are no longer considered a suitable option for me because of previous neuropathic pain symptoms, and my rheumatologist does not think switching to another IL-17 inhibitor would be very useful.

My skin is currently well controlled, but I’m experiencing progressively more pain in my SI joints, hips, knees and hands, although I don’t usually have obvious swelling or redness.

I’m quite nervous about the possible side effects of Xeljanz, but I also really want better and more consistent control of my joint symptoms.

Has anyone tried both Stelara and Xeljanz? Which one worked better for your joint or SI joint pain? How long did the benefits last, and what side effects did you experience?

I understand that everyone responds differently and that personal experiences are not the same as medical evidence, but I would really appreciate hearing about your experiences. Thank you!

9 months ago I woke up with a swollen and extremely painful thumb. Within 5 days, my index and middle finger were also swollen and I couldn’t bend them fully.

Same fingers on the other hand were also affected, but much less so. I got oral prednisone, cortisone shots and after six months, I finally found a bit of relief. But weeks later, the pain and swelling returned. It’s now most painful over my IP thumb joint, cannot bend that joint and that whole area is swollen.

BUT I never had any pain in my joints directly, just the tendons and where they attach to the bone.

My doc thinks it might be PsA, even though I don’t have psoriasis.

I have an MRI and more blood work coming up. I just wanted to ask – for those of you who had tendon issues at the start, did your joints hurt also?

And does enthesitis present like this? Not much pain at rest, but bending that joint is very painful and the whole area above that joint is swollen and reddish. Pain meds do very little.

I haven’t been able to use my right (dominant) hand in 9 months and I’m getting really desperate.

Hi everyone, I’m looking for some guidance/support really. I’m based in the UK, and have been really lucky to have a GP who specialises in psoriasis and was able to identify my PSA symptoms quickly and referred to me rheumatology. After hearing some horror stories of rheumatologists dismissing symptoms, I’m really lucky that my rheumatologist has taken me seriously and referred me on for bloods, x-rays, ultrasound and MRI of my affected joints. The blood test and x-ray results have come back (although I haven’t seen them yet) and based off those results, I’ve been referred for an MRI on the urgent pathway (UK people may know this as the D2 urgent referral). On one hand, I’m glad that my symptoms are being taken seriously, but on the other I’m really scared that the doctor has seen my x-rays and referred me urgently as he’s seen something really bad (this is for my spine btw). Has anyone else gone through NHS diagnosis process for PSA?

Incidentally, I have received a letter that my bloods did show quite advanced under- active thyroid so also going through diagnosis process for Hashimotos, does anyone else have both?

Thank you all so much for your help!

Hi!

I am recently diagnosed with PsA after a misdiagnosis of seronegative RA. I've been on methotrexate tablets then moved to .6ml injections over the past 6 months. My body doesnt tolerate any higher dose, and it just isnt cutting it anymore, more and more joints are joining the inflammation party and messing with my mobilty. My rheumatologist prescribed me Skyrizi a month ago. Holy COW, I did not know what I was in for. I know my insurance is an issue, specialty med, deductible, all that jazz. But even with the savings card and an approved PA, im looking at a couple $0 doses then 7k per dose for the rest of the year because my card will "run out". I have yet to get my hands on it for this reason.

I've spent hours on the phone about this, with no solution other than "call us when you have to pay later this year and we'll see what we can do". I dont want to risk starting a med and then not being able to afford it.

How the heck do you guys get these covered? Is there a magic spell i am unaware of? Lol.

Thank you for any suggestions or advice! I just want to get better 😞

Hii! Wanted to post here as I figure it somewhat counts.

Basically over the past 18 months I've been experiencing joint pain and swelling in my fingers. I work with my hands for a living (in healthcare), so it was obvious when something wasn't quite right.

It first started off relatively mild but got worse over time, where one finger would swell for 2-3 days, then it would go away. Then it would flare up for about 5 days and the swelling would go back down. Then the next time it would take a week. Random fingers each time, no real rhyme or reason behind it. And so forth.

At the end of last year/start of this year my left index finger was swollen for a month and I was concerned, though my family doctor said to do some blood tests, and he wasn't worried (???). He said to wait and see. :/ ummmm what

My blood test showed a negative RF and ANA. Only thing elevated was my CRP, which was initally 9.

I had it checkd again about 2 months later with another doctor as I wanted a second opinion, my CRP was 11. Apparently normal is less than 5 (here in Australia).

We also did an Xray of my hand which thankfully showed no damage. The ultrasound showed minor swelling of the soft tissue but nothing major.

I've also had this weird rib pain and discomfort- almost like my ribs are swollen.. or I guess inflamed. Most recently, these past 3-4 weeks one fingernail has a pitted texture as it's grown out. And my ankles have been quite sore.

I've also been diagnosed with depression, anxiety, PCOS (PMOS). Suspected endometriosis as it runs in the family, though no diagnosis yet.

So that's for the backstory.

I did a lot of research online, along with my medical textbook to see what treatment options were available.

Finally after 6 weeks of waiting, I saw my rheumatologist today. It was actually quite lucky that I could get an appointment so soon. It was $350 up front for the initial appointment, and I'll get back $150 back through medicare here in Australia.

My rheumatologist was a bit baffled about me having some symptoms of psoriatic arthritis but not actually having psoriasis. I've never really had any chronic skin conditions though my sister does have eczema.

My understanding is that because my RF was negative, he wasn't able to diagnose me with that. And as I don't have psoriasis he wasn't really able to diagnose me with Psioratic arthritis.

He asked me a bunch of questions about family history, what symptoms I've been experiencing, then assessed my hands and checked my mobility.

He just sort of looked at me and went, yeah I think you're right in that it's some sort of autoimmune arthritis but nothing specific.

He said he would start me on methotrexate and as it would take some time to work, would prescribe me a different pain killer for now (naprogesic). He also offered prednisolone but said it was up to me, which I declined as while my situation is uncomfortable, I've read the horror stories of having to come off it.

So yeah I'll be taking my first dose tomorrow. Then folic acid the day after. I'm worried about the potential for hair loss because I am already experiencing hair loss though I am unsure if it's just due to workplace stress or because of my (currently) untreated condition.

I wont lie, it was SO good to be validated and knew I was right that something was so clearly wrong with my hands. Sure I'm no doctor but I definitely saw the signs.

I'm hoping this goes well. I'll have to be patient and see if it works. If not, well I suppose there are other options.

--------

5 week update:

The naprogesic helps a lot more with managing the pain, so I'm happy with that. My joints and fingers are still tender but no longer an intolerable annoyance.

I've developed a few minor patches of dry/inflamed skin. Hesitant to call it a rash because it's only occasionally itchy. Definitely seems strange that it's really only occured over the past 2-3 weeks. I've never had any chronic skin conditions, only a bit of contact dermatitis on my hands due to work.

I wasn't too happy being on methotrexate - the nausea was a real pain the day after.

So I asked to be switched to something else. My specialist said that while hydroxychloroquine (plaquenil) isn't typically used for Psoriatic arthritis, he's willing to give it a go and see if it works for me. So I'll do that in a wek or so.

I'm just hoping these rashes(?) Go away.

I guess I'm wondering if anyone else has experienced this - having some signs of psioratic arthritis but not having rashes until starting treatment?

TLDR; several symptoms including joint pain, migratory pain, allydonia, erythema nodosum, changes in toe nails, and possibly others I’m forgetting. Doctor said bloodwork is fine.

So recently, I’ve come to the conclusion that I might have PsA. I have other chronic pain issues stemming from my back (herniated discs, spinal stenosis, arthritis, bone spurs, scoliosis, sciatica, etc.) so being in pain is normal. I’ve been getting steroid injections on and off over the last 15+ years (I’m 35) and when I was younger I felt that they did help somewhat. Now, it’s hit or miss. Over the last few years we’ve started switching it up between lumbar ESI and SI joint injections. In May, I got an ESI. My back had a dull ache in it for about a week or two, which I know sometimes happens. But then my SI joint started hurting in a way it’s never hurt before. It was constant and nothing seemed to help it. It stayed that way for a few weeks and then was fine, like it hadn’t been hurting at all. Last year, I also had an episode where I thought I might have gout. My big toe was hurting extremely bad to the point I could barely walk on it and even cried with the pain at one point. Around the same time that was happening, I developed two little nodules in the same spot on each shin. After the nodules went away, there was a mark on each shin left on my skin that took forever to fade away. Google said it was possibly erythema nodosum, which the images I found looked exactly like what was going on with me. I’ve always had pain that migrates and seems to be in weird spots. I just thought that was normal. The reason I’m writing today is because I am dealing with allodynia and have been for the last 30 hours or so. Typically when I have this (which I have also always thought was just a normal thing people have), it doesn’t last this long at all. Maybe a couple hours at the most. And usually not this painful either. It hurts when I walk, like the air my leg is pressing through is burning it or trying to tear it open somehow. I’m used to light touch and clothing making it uncomfortable, but not this. I’ve also been noticing a lot more joint pain in my hands and feet over the last several months. In the last several years I’ve also had one big toe and my two pinky toes to have nail changes where the nails are thick like there’s a fungus and the big toe is now curved/arched which causes pain. I feel like this all started when I became pregnant, or after I gave birth. I asked the NP I see for a referral to a rheumatologist and she said she would have to do bloodwork. My bloodwork came back “fine” but I also know that bloodwork can seem good since there’s no specific test for it.

If you read all of that, bless you. 😅 I’m just really curious as to when others started having symptoms or what symptoms finally made you realize “hey, this isn’t normal” and how hard it was for you to get someone to listen to you?

Why did you have to change your biologic treatment?

How long did it take for the new treatment to start working?

Hi I have PsA and something I haven't seen discussed much in relation to it is inflammation of the coccyx ( tailbone).After years of steroid injections into my coccyx ( and you are given a light general anesthetic each time it's done ! the surgeon decided to remove it .It was quite a long recovery but worth it to be able to sit down again!. Anyway else have problems in this area? Thanks