r/PsoriaticArthritis

So. I’m 29 year old active male 190 lbs lean. I don’t drink, eat very healthy. High protein diet etc. workout 4x per week.

I have always struggled with intense lower back and neck pain since I was 16. As I get older, my joint pain in wrist, shoulder, and back continues to get worse.
My psoriasis is on my groin area, eyebrows, and scalp. I’ve managed it but every year gets worse and when flairs, can be really painful and itchy.

I just started a gluten free diet as I heard that could help.

My biggest concerns is that the skin rashes are getting to the point where it’s affecting my personal life.
The shoulder and wrist pain is significantly reducing my strength and range of motion in the gym.
And the morning stiffness is really difficult to push through- especially my lower and mid back. Takes about an hour of walking and stretching for the pins and needles to go away in my next and back after I wake up.

The Dr. has recommended I get on a biological/ monoclonal antibody like Rinvoq or Skyrizi because it’s a chronic condition and the concern is long term joint damage that could be irreversible.
I’m very holistic and try to avoid medications and shots/ concerned about known and unknown side effects especially because I am a highly sensitive person.

Can someone share their experience with these drugs or natural routes? Anything that’s helped?

I am desperate and just need to vent. Maybe someone also has a positive story to share?

I was recently diagnosed with Psoriatic Arthritis by a rheumatologist, although my general practitioner and I had already suspected it for quite some time. It was an incredibly difficult journey just to find a rheumatologist who would even see me. The only thing that gave me any relief from the pain was steroids, so I’ve now been on prednisone for six months, with the highest dose being 60 mg.

This is now the fourth time I’ve tried to taper down the prednisone, but every single time I reach the 20 mg mark, the pain becomes unbearable again and I end up having to increase the dose. I’m currently in week 10 of taking Methotrexate, but it still isn’t working well enough. Starting in July, I’m finally supposed to begin biologic treatment, and I really hope it will change my life again. I am so incredibly tired of being in pain and feeling horrible about the way I look.

Right now, staying above 20 mg of prednisone feels like the only way I can manage daily life. But as we all know, steroids come with a price. For me, that price is the moon face , along with other side effects. I’ve reached a point where I can barely look at myself in the mirror anymore, and I avoid having photos taken because my face has changed so much. I don’t even want to leave the house anymore. People don’t realize that I’m sick or that this is caused by medication, and honestly, I just feel embarrassed and ashamed.

And to be honest, it’s really, really bad. My face has at least doubled in size.

Did your moon face go away quickly after lowering or stopping prednisone? Is there any chance for it to improve while still taking prednisone?

Im a 60 year old woman recently diagnosed with psoriatic enthesitis. Ive had scalp & ear psoriasis for at least a decade which was very,very mild until covid 2021 now i have it to a much greater degree in those same areas. Ive had plantar fasciitis twice in the last 4 years , including right now & Achilles tendinitis once. I believe those are my only symptoms. My gp is sending me to Rhuemy June 1st , they have spoke on phone & it is the Rhuemy who says its psoriatic enthesitis.

After reading on here I have to say im pretty freaked out! On top of the pain of the enthesitis I am really terrified of the increase risk of heart disease & stroke !! I am quite overweight as it is & have slightly elevated cholesterol & stage 1 hypertension. I cant help but feel like im just waiting to die an early death. Im so scared & I haven't even mentioned the risk of cancer !!!

My diagnosis of suspected psoriatic arthritis was changed to “just joint degeneration,” so my doctor prescribed simpler painkillers and physiotherapy. This cycle has been repeating itself over the past few years. 😅

I’m not angry or sad anymore, just more bored and helpless. I know that being upset doesn’t get me anywhere and only drains my energy, so I’m just kind of existing.

Hello!

I started seeing a rheumatologist after my oral and maxillofacial surgeon diagnosed me with severe tmj arthritis. I’m 27 (F) this year.

All my bloods have been negative, but my dad has psoriasis and possible psoriatic arthritis. I’ve had jaw pain, shoulder pain, hand pain, and hip stiffness for as long as I can remember. Also had a completely swollen finger two months ago, which I suspect was dactylitis. I also had tendon pain in my right ankle maybe 2-3 weeks ago which had a sharp pain when bending my ankle forwards. As such, I’ve kind of suspected I have PsA.

My rheumatologist said it’s possible but he’s not entirely convinced, as he said it’s usually people who have severe skin arthritis that get PsA. He suggested a biopsy of my jaw joint to confirm or rule it out. (Edit: I’m also being trialed on sulfasalazine)

My jaw doctor instead got me to do a whole body bone scan. I got the results and it showed possible mild arthritis of bilateral shoulder joints and sacroillitic joints, as well as a brightened portion of my upper heel area on the right (Achilles area).

Has anyone had a diagnosis based on results like this? Or been taken more seriously based on nuclear bone scan findings? Or will I need an MRI?

I feel like surely it shows I do have pain in multiple joints. Hoping rheum will take it seriously at my next appointment on Monday. Really hoping it’s my breakthrough 🙏

Hello all. I’m very often doubt the validity of my illness because I’m on my medication, but my hsCRP is completely fine. But my pain isn’t. It’s excruciating to walk for more than a few minutes. I can’t walk up the stairs without my legs trembling from pain, and I can’t do my dishes without my back feeling like it’s broken from bending over.

Is it just psychological at this point? The pain feels really real but if my body isn’t inflamed then I have no idea what could be causing the pain to be as bad as it is.

Does anyone else struggle like this?

Once my dermatologist confirmed psoriasis, it was clear this is a slam dunk PsA diagnosis based off SI joint pain, nail pitting, fatigue, peripheral joint pain, hair loss, etc. My primary seemed completely unaware of the disease and didn’t see how psoriasis could be connected to a rheumatic disease. She will neither provide me with a referral nor sign my short term disability/FMLA paperwork.

I have to call my dermatologist to get her to submit the referral and then who knows how long the wait to actually see the rheumatologist. I’m already pretty sure my derm will not sign off on disability papers but I’ll ask, I guess. I need to take time off now to focus my very limited waking/functional hours on PT. But it doesn’t look like I’ll get that, increasing the odds that I do a shit job and get fired. Now I fully understand the disability to homelessness pipeline.

Thanks America 👍

Heyy, i just got diagnosed with axial psoriatic arthritis and I'm going to be starting humira soon. How do ye judge when ye wear a mask? I know its different for everyone, but do you wear them in shops, rooms with a lot of people? Im finding it hard to know when I should wear a mask, or if its just all the time

Constant anexity is a new feeling for me, recently diagnosed.
How to overcome this bad feeling of anxiety?!

I wrote here 4 months ago about having hip pain and could it be PSA or Sciatica on my right side.

Finally my right hip cleared up only to have the exact same pain show up on my left side and the worse part is the Sciatica or PSA pains that left my right side have shown back up .

Seriously I can’t make this up it’s horrible I can hardly walk and Im home alone until tomorrow.

Can anyone else relate to this?

Im currently sitting here feeling sorry for myself .

Hi everyone, I’m new here and just looking for some guidance. I’ve had psoriasis for a number of years and over the last 12 months have developed joint pain and a whole bunch of other stuff. Fortunately have a good doctor who has managed to get me a rheum referral, but current wait time for an initial appointment is 10 weeks+. I initially scheduled an appointment with my primary doctor to discuss my blood test results but she called me about them separately anyway. I still have an appointment scheduled this week, I want to tell her I’ve developed new symptoms since my referral including finger swelling, but will it even make a difference if I already have a referral? I don’t want to waste time or take an appointment from someone else, but at the same time I’m in so much pain and the thought of possibly another three months waiting for rheum with no help in between is stressing me out! Is it worth me keeping the appointment just to tell her about the new swelling? I want to ask about pain relief as I’m currently just using ibuprofen and it’s only making a mild difference

Hi everyone,
I’ve been trying to understand my own situation better and I’d really appreciate hearing other people’s experiences.
For me, it feels like my symptoms progressed really quickly over the last few months. Before that, I didn’t really have many noticeable issues, and now it almost feels like things went from 0 to 100 pretty fast.
I’m wondering if anyone else has experienced something similar:
Did your symptoms come on suddenly or develop slowly over years?
Did anything seem to trigger a flare or rapid change (stress, illness, injury, medication changes, etc.)?
Once things started, did they stay consistent, fluctuate, or continue progressing?
I’m just trying to understand if a rapid shift like this is something others experience or if it usually builds more gradually over time. I’m not sure if something triggered it for it to go from 0 to 100 or if this is just normal.
Thanks in advance to anyone willing to share their experience.

It's been quite a journey. 10 years ago, a few months after a very traumatic event (surviving a terror attack) I developed Psoriasis. It first appeared on my elbows and knees and then on my scalp and inside my ears. I got it diagnosed by a dermatologist, got some creams but they never helped.

4 years ago, my right thumb suddenly felt painful all the time. They could see there was an infection. I tried some anti inflammatory meds, got cortisone injections. Nothing changed. My other thumb started to feel the same a year later. 2 years ago, my chestbone started hurting after a multiple day hike. It felft awful. I have a panic disorder and the chest pain feels like I'm having a heart attack. It made me spiral and I started having anxiety attacks again very often.

I got it checked, had pictures taken, bone analysis, mri. They did see an infection, and I got some meds but it didn't help. My anxiety got a hold of me and I went on sick leave for half a year cause the pain and anxiety was too much to carry. After the sick leave, I started again with going to the clinic for some checkups. I was diagnosed with hypermobility. A year ago, my left heel started hurting a lot. Got diagnosed with plantar fasciitis.

I went to a physiotherapist to deal with all the seperate issues. It never helped. The anti inflammatory meds don't help aswell. All the pain is still there. Thumbs, chest, heel. Half a year ago, my anxiety spiraled again and I'm on cymbalta/duloxetine right now. It works effectively for managing anxiety but also pain. I haven't felt this good in years. All of the pain is still there (thumbs, chest, heel) but it's way more manageable.

I've started shockwave therapy to take care of the plantar fasciitis. The doctor doing the therapy told me she heard of my case from other doctors. She told me they assume I have psoriasis arthritis, but all the examinations, x-rays, mri's and blood work don't prove it well enough. She told me it could take another few years before I get diagnosed. I feel a bit like I'm going insane.

Does anyone have similair stories like mine? How long did it take to get diagnosed so you could receive proper help? I kinda feel like I'm going insane. I'm only 35 years old now, and it feels crazy having this much pain at this point in my life. I'm very outgoing and sporty. I bike 20kms/14 miles every day, I hike alot, I go swimming. It just feels like my body is protesting and I'm kinda scared what the future might hold.

So, my psychiatrist said that i should control inflammation in order to not end up in bad asthenic-apathetic states. I had been thinking that my inflammation is under control because I’ve been taking biologics since 2016 - it actually worked well, I’ve never had acute pain flares since then.

But now I pay attention and I notice that “no bad pain” doesn’t mean “no inflammation”. It looks like it’s still there but in a different shape. I would wake up being very heavy, with different parts of me being “unpleasant”: neck, lower back, lower ribs, biceps, knees. It’s hard to explain what exactly “unpleasant” means, but those places would like a bit hot, kinda softer than usual. The whole body feels “inflamed” and it’s sometimes hard to name exact spots. I would just want to lay down and wait until it goes away.

Sorry for such an explanation, but my question is exactly about that. Maybe you have something similar - how do you describe it?

I’ve been on Simlandi (Adalimumab) since Dec 4. I’ve been sick 4 times in last 6ish months (including right now). This is my third round of antibiotics since February due to being so sick. I’ve never struggled this badly with catching things. I literally just can’t fight anything off now that I’m on these injections. But here’s the thing, I don’t feel like it’s helping my main symptoms either. My biggest symptoms are horrible SI joint pain and really really bad fatigue. The other pain in my hands, wrist, ankles, feet and every now and then my knees are mild. My back has improved a little but I’m still taking naproxen for it when I need to, and my fatigue has not improved. So to me, it’s not really helping - it’s simply hurting me by making it harder to fight acute illnesses. I felt good in December and January and had high hopes, but then I was sick for all of February, then felt ok for 3 weeks in March, including more energy, but then got sick and just nose dived. Fatigue has been so bad since then and I’ve been sick a few more times since.

My rheumatologist told me to take the shots weekly for 6 weeks to see if we could dig me out of this fatigue flare. I took a shot May 5 and May 12, and then boom, super sick starting May 15. Had to go to urgent care (again - this urgent care has seen me 3 times in a 2 months now) bc I felt like death warmed over. I skipped today’s shot because I’m actively sick.

I’m considering stopping the injections for 6 months to see what happens. I’ll of course talk to my rheumatologist about this idea, but anecdotally I am curious if anyone has a similar experience? If so, what happened when you stopped your injections? I just don’t think this is a good treatment for me.

Hey Guys,

So I have the general idea of the infection risk with biologics but just kind of trying to gauge experiences. Im a person that enjoys to travel alot when I can and go to sporting events, disney, etc.

Just kind of curious what peoples experiences are with that kind of stuff and if I will need to modify

I have a full plan for every level of pain, but I'm waiting for a prior authorization, off meds, and the fatigue has me feeling like I need to go on medical leave at work, which I cannot do right now. In the distant past, I was given modafinil, but that seems more restricted now.

Are you still able to? I am so scared of disease progression. Petrified even. I feel like everyday I have an able body will vanish forever once it progresses. 🥹 I want to be a hairdresser or nail tech maybe but I feel like that is pointless too now.

Do you still feel strong, and flexible?

I was diagnosed with PsA (in my back and hips mainly, but inflamation in all the peripheral joints too) about 18 months ago and I'm treated with methotrexate that keeps it pretty well under control, but when me and the family go to Disneyland Paris next year I was hoping I'd be able to get a pass that either meant less queues or they would give you a time to come back so it meant less standing around. I was wondering if anyone has had any success getting one, and if it was fairly easy to do? I know from going to Alton towers last year that having to stand in a queue for that long is absolutely a recipe for a flare up and a few days in bed, and I'd like to enjoy more than just the one day at Disneyland with my family if possible! I know that the alternative is I suppose a mobility scooter but I'm also supposed to stay out of the sun ☀️ with the methotrexate, any advice or experience with this?

I have suspected psa, because I have dactylitis in my 2nd toe (confirmed with mri, I have autoimmune arthritis in the pip and dip joint, bone marrow edema, and tendon inflammation throughout that toe…and more mildly in the 3rd toe too), and also enthesitis in my elbows and Achilles. They’re calling it seronegative autoimmune arthritis for now, and just have me on hydroxycloroquine.

I already have another autoimmune disease, sjogren’s disease, that doesn’t cause these symptoms. I don’t have psoriasis, so they aren’t officially diagnosing me and also won’t put me on strong meds.

Ever since the autoimmune issues started in my toes, I have nail fold irritation. The nail folds will get pink and swollen for seemingly no reason. Is this common? I don’t even know what to do about it. The nail fold irritation is effecting my 2nd and 3rd toe, but now has moved over to my big toe (all on the same foot). Already saw a podiatrist, and he said I just have curved nails that are digging into the skin and I may need an operation on these nails. But…this never happened before the other autoimmune issues with my toes, so obviously there’s some kind of inflammatory process changing the nail shape or causing my body to overreact to nail fold irritation.

I’m seeing the rheumatologist NP next week and I just know she’s not going to be any help on this and will just scratch her head.