r/PsoriaticArthritis

Hi everyone, I am starting rinvoq tomorrow after failing skyrizi, humira & cosentyx over the last 2+ years. I’m exhausted, anxious and feeling hopeless as I loose more and more of my mobility at 34 years old. I already read & went over the risks , the scary side effects with my rheumatologist. I am looking for the success stories ! My anxiety is through the roof the last few months to the point that I can barely function. Taking a new med is a huge trigger for me as I’m afraid of having some insane reaction. So please don’t share with me any scary experiences I can’t handle it right now. I need a little bit of hope to keep me going. My world is so small the sicker I am getting.
Thank you for your support!

There isn't a rheum near me that will answer calls or has an appointment any sooner than six months but more like the best care available can't even make new appointments until November of next year. The only place that called me back has the worst reviews I have ever seen, and I don't subject myself if I can help it to bad care anymore, not after the allergist that called my girlfriend a "plague rat." I am making an appointment tomorrow with a dermatologist, but I am a little panicky about still not getting a diagnosis or just getting care even after having one. I am a little desperate for how bad this has gotten. Has anyone tried any of the telehealth services that offer this? Had luck? Better suggestions? I have a boss with rheumatoid who told me she's known people to camp in teaching hospitals until they could be seen, and I am not above it, if it seems viable. Just looking for anything at all. I can't even take nsaids right now because I've been in the ER for ulcers and uncontrollable vomiting from a dormant infection I've apparently had since childhood and, shocker, that whole spell has not done wonders for the pain I was already in. Very thankful for any help or suggestions I can get.

I was diagnosed with scalp psoriasis when I was 12 and since then it’s gotten progressively worse and spread to most of my body (I’m 34 now). To manage it, I’ve been on Skyrizi and it’s been a god send. My skin hasn’t looked this good since before my original diagnosis. I’ve recently started noticing pitting on a few of my fingernails (only on my left hand) and on my big toes. I thought the soreness/stiffness in my hands were due to really strenuous workouts (I’m very active and love weightlifting) but now I’m starting to think it’s the beginning of psoriatic arthritis? The worst of the pain is always in my thumbs. Has anyone else had PsA manifest in this way before your diagnosis? Should I book an appointment to see a rheumatologist?

Does anyone use adhd medication to combat psa fatigue?

I know i have adhd but ive never tried for a solution, ik sure of i got diagnosed i could gain access. Having spent the last 30 yrs struggling for maybe 9 months of every year - ive had enough. I just want to live a bit before im completely unable to do anything. (Which i am close to now due to damaged joints)

Has anyone been diagnozed with this while on Leflunomide (Arava)? I've been taking this med for over a year and I can't tell when exactly when the tingling sensations started as I'm also on low-dose pregabalin and amitryptline (they can mask neuropathic pain)

I’ve been dealing with joint pain in different parts of my body for about 15 years. A few months ago, I finally saw a rheumatologist for the first time, and they said psoriatic arthritis is a possibility. I’m currently waiting for the results of my second round of blood work.

Lately I’ve been wondering if some other things might be connected too. I remember having a lot of stomach pain as a child and going to the doctor often. My daughter also had frequent stomach pain growing up and was diagnosed with IBS in high school. She still deals with chronic diarrhea now.

Since I started seeing a rheumatologist, I’ve been wondering whether any of this could be connected somehow. Does anyone here have psoriasis, psoriatic arthritis, and IBS or other chronic digestive issues?

Hey guys

Today i did my first bi-weekly injection of 40mg adulimamab or however you bloody spell it😂

So far ive had direct steroid injections in my foot, a general steroid injection in my butt, meloxicam and naproxen max doses, 5 months of methotrexate

I havent ever had a single pain free day, or lesser pain day, since the first day i started getting it (started in my foot, now my left middle finger, neck and knees)

I am really praying to the arthritis gods that this starts working im looking to see if anyone is in a similar boat as me and can share their experiences, obviously every case is different

Thanks!

Looking for advice or similar experiences.
I’m currently dealing with my second episode of erythema nodosum (EN) in 17 years as diagnosed by my derm. The first time was in college, about 7 months after starting the birth control pill Yaz. Around that same time, I had mono and the flu, so my doctors felt one of those infections was the more likely trigger. The EN eventually resolved on its own, and I stayed on Yaz for many years afterward without any recurrence.

Recently, I restarted Yaz about 4 months ago and have developed a relatively mild EN flare. I’m also on a biologic medication for autoimmune arthritis and have been for years, although my arthritis is currently in medication-induced remission. My bloodwork has been normal except for a slightly elevated white blood cell count.

I asked my OB-GYN whether I should stop Yaz, and she advised waiting for now since my previous episode eventually resolved while I continued taking it. I’m also waiting to hear back from my rheumatologist.

For those who have experience with EN, do flares ever simply run their course and resolve without identifying or removing a specific trigger? Or is it usually necessary to find and eliminate the underlying cause? Since we don’t know what may be triggering mine, I’m hesitant to stop a medication that I’m otherwise tolerating well.
Thank you for any thoughts or experiences.

I'm new to suspecting i might have my dad's arthritis almost everything matches up but I'm wondering if I'm alone on a few things that leave me scared or my life quality is down so much. I keep getting a impending doom with sleeping or randomly while awake where i feel like I'm dying or something is horribly wrong but i go to the er and they can't find anything but inflammation its driving me insane and I'm so sleep deprived and scared because of it. I've had previous PE's so i get scared about these symptoms but they never find anything and I'm stuck in the er for 8 hours. and not only that i feel so much brain fog to the point it's terrifying like I'm not myself anymore it feels horrible. my parents both neglected me when it came to me having issues starting in 2020 but I'm in horrible pain and having the same exact symptom matches up as my dad except he's doing better now and doesn't really talk to me about this stuff. i just feel so alone and scared about all of this stuff. I'm waiting for a rheumatologist appointment and I'm on meloxicam which has been helping so much but those two issues I've been having leave me lifeless and scared. please let me know this is normal for psoriatic arthritis and what has helped you with this because i have no clue what to do anymore and I'm so burnt out.

Hey everyone. I just need support or a vent. I’ve been flare free for 2 years. But I’m in a flare now and I am miserable. I saw my doc, I have steroids… but they just haven’t kicked in much yet. I took Tylenol and icing my sore joints. But I am simply in so much pain, I don’t know what to do. I am in bed crying, literally. I just could use some support or ideas for relief until the steroids hopefully take the edge off.
Thank you.

Any tips.

Struggling to find a treatment after failing several biologics. I struggle with pain,stiffness and subsequent fatigue. Anyone who has found help in a book to deal with this?

I am recently diagnosed w PSA not started on meds yet as in UK and waiting for NHS appointment.

One thing I forgot to mention is some days , not very often but occasionally I wake up with legs that feel heavy and when I walk it's like wading through er sludge can't think of a better description! It usually lasts a couple of days and is accompanied by a bit of a flues feeling but not " proper " flu and I feel drained of energy.

Does this sound like it could be another symptom of PSA? I have the joint and finger / toe swelling etc but only just considered this could be related. Thankyou in advance

Is it possible to get psoriatic arthritis before it shows up as plaque psoriasis? I have had fatigue and joint pain my entire adult life. In my 20s my right hip hurt so bad I went to the er thinking i must have fractured it somehow. I have had sleep studies done due to my fatigue. No sleep apnea and I was diagnosed with idiopathic hypersomnia. Anyway, last year (age 38) I got severe plaque psoroasis. I was thinking today I wonder if it’s all related? I was curious if plaque psoriasis always comes first?

Hi I have PsA, but due to insurance fvckery, I'm not on any drugs to help.

(I'm handling the psoriasis with creams and ointments)

So yeah, I'm in constant pain and hobbling around like an old lady. (I'm 44)

We're about to go on a trip to visit inlaws out of state. My back, hips/ knees/ ankles are toast after only 2 hours in the car. We're going to be staying in a yurt.

Give me all your tips and tricks and any recommendations that will help me survive this trip!

Are the specific PSA meds I see advertised just for pain? Do any address fatigue and other things?

I've gotten the blood work and shown HLA-B27, progressive scalp psoriasis (that's been spreading to every little corners of my body) and SI xrays that indicated erosion (xray conclusion: Degenerative spurring and subchondral sclerosis noted at the sacroiliac joints was determined from the xrays).

Been put on Skyrizi for a month and psoriasis seems to be clearing but not sure if it's made impact on joints yet due to a flare up still leaving me in pain. I think my doctor made the conclusion given my skin and bloodwork but any chance of Anklosing Spondolitis/axial spondyloarthritis and necessitating an MRI? Years ago I got an MRI during a flare-up and it's indicated a major disc herniation at L5-S1 joint so my condition was resolved as that for the longest. But it's been expressed as axial joint pain throughout my life with the way I end up limping and have to crawl to the bathroom on my worst days). I'm seeing my rheum again and want to express interest in getting a scan done to solidly conclude my condition and make sure I'm on the path to remission longterm with the right biologic.

Just thought I'd mention this experiment I've been carrying out for the last six months.

I read somewhere that coconut was a natural anti-inflammatory, so I hypothesised drinking the stuff might reduce inflammation in my body.

So I have done just that and have had a 250ml glass of cold unsweetened coconut water, first thing when I get up, since January.

And I have to say my stiffness/joint pain has dropped right off.

Obviously this could be a coincidence or placebo effect, but quite frankly, I don't care.

I mentioned I was using this on the Bath Rheumatology Webinar and it was something they hadn't come across before.

Just thought some of you may find it interesting.

Cheers B 👍🏼

I have an Apple Watch and when I exercise it gives me a VO2 reading. Pretty much I do the same amount of exercise, the same amount of time, with the same amount of effort, very predictably.

But.

I notice my VO2 max readings are noticeably higher when my disease is not flaring, and noticeably lower when it is. Even if I’m managing to do the same exercise, same intensity, for the same amount of time.

It doesn’t make sense that someone’s “cardiac fitness” could vary so much according to whether or not arthritis is flaring.

Ever since Rinvoq started to kick in (thank the universe) my VO2 goes up and up each day. When I was between medications and waiting for the Rinvoq to be approved, it was going down and down each day.

It’s a little alarming in fact — is my heart inflamed and not functioning as well when my PsA is flaring?

Has anyone noticed this pattern?

I wanted to post a photo of my graph to show what I mean but it looks like no photos are allowed.

I am in the middle of diagnoses. Currently I am diagnosed with -RA but I am starting to realize, after 5 drs saying this too, that it may be PsA. I have been diagnosed with Excema my whole life, but what if it is actually psoriasis? I am on hydroxychloroquine and waiting for insurance to approve humira.

Anyone here in the same boat? We currently are being cautious and sticking to treatments that help both.

TL;DR what is the difference between daily pain and a flare?

Ok, maybe not entirely like I’m five. I’m familiar with autoimmune diseases - this is not the only one in my household. I understand psoriasis and the inflammation causing the arthritis. This question comes about because I think I had my first known flare and figuring that out has me somewhat confused.

TL;DR what is the difference between daily pain and a flare? Or is there a difference? Should I pretty much blame all my pain from here on out (outside an obvious injury or an event that would cause pain)on PsA? I see posts all the time of people saying their pain is persistent and daily. So I really don’t understand the difference or what role medication hopefully plays? I get you can have breakthrough flares, but do meds hopefully control both? Is all pain a flare? Does consistent pain indicate joint damage? If you have joint damage is there anything that can be done? What do you do to manage a flare?

Flare info: I had several Charley horses one night and my knees were so stiff and painful - way more than one would expect. I have had knee pain from tight muscles in the past (way before PsA symptoms) and my muscles were tight and uncomfortable so I chalked it up to that, albeit a seemingly crazy outcome from Charley horses. I could barely walk. It got a little better daily, but was persistent. This diagnosis is new to me and has been pretty narrowly defined. So even though it definitely should have occurred to me, it just didn’t.

Background info: I got diagnosed in April accidentally. My derm diagnosed me when I asked about what I was pretty sure was psoriasis on my elbows. She asked me about PsA symptoms and determined I did in fact have PsA. My feet and hands hurt in the morning and my feet hurt when I sit a while. Honestly, I thought this was a general stiff getting old thing. I started otezla at the end of May so not long enough for it to fully be working, however I am having less foot and hand pain. The improvement is sporadic but it is both in the amount of pain and also I’m starting to have *some*, not many but some, pain free mornings.