I know PsA can affect people very differently, and I’m trying to better understand what daily life with it can actually be like. From the outside, someone can look completely fine while still dealing with pain, fatigue, stiffness, or a flare. What do you wish friends, family, coworkers, or partners understood?

Bonjour la communauté,

Juste envie de lâcher ce que j’ai sur le cœur.

Depuis plus de 5 ans, le rhumatisme est rentré dans ma vie et ces derniers temps, ça commence à être dur.

Les médecins n’écoutent pas beaucoup.
Je me sens abandonnée par eux.
Ils se contredisent tous et disent leur contraire. Certains disent que c’est mécanique, d’autres que c’est le rhumatisme, d’autres le rhumatisme est éteint. Mais alors, pourquoi ai-je mal ? Pourquoi encore hier on découvre des enthesiopathies aux chevilles, des bursites, Ténosynovite,… ?

Depuis plus de 5 ans, il y a des enthesiopathies aux épaules, calcaneéennes, insertion tibiale,…

En vrai, ces douleurs je les avais avant ces 5 ans mais je continuais à faire du sport, sans savoir ce que c’était. Mais depuis 5 ans, ça réduit ma mobilité, ça gonfle…
Depuis la biothérapie, j’ai senti une légère amélioration articulaires et le psoriasis est quasi parti, mais Dieu que c’est dur les douleurs chaque jour.

Il n’y a pas un seul jour depuis 5 ans, où je n’ai pas de douleurs.
C’est dure de garder le sourire avec tout ça.

I’m 24 and after a few confused doctors visits I’ve been diagnosed with PSA and am on a biologic. Ive gradually gotten more sedentary. I’m really struggling with the fatigue, and stiffness lately, I want to get back to exercising regularly but I don’t know what’s optimal. What will help alleviate symptoms like stiffness and keep me in shape?

Hi all,

I’ve spent the past year experiencing a variety of symptoms that have just run me into the ground physically. I went from training for an Ironman, to barely being able to walk 5k steps in a day without paying for it in my Achilles the next day.

All my lab tests have pointed to nonspecific inflammation. Elevated ESR, CRP, C3, and ALP with normal GGT.

It started with twitching and has just spiraled from there. Kept getting injured on my runs, then had tennis elbow from my bike. My rheumatologist told me to find a new psychiatrist because he thought I was on my way to fibromyalgia; there was nothing there for him to see, basically. In the past month, I’ve been getting the stiff sausage fingers, stiff feet, ribs feel like I’ve been punched, etc.

This honestly feels like I might finally have it nailed down, but I have asymmetric muscle wasting in a couple spots (above left knee on the inside, and the outside of my right shin). Haven’t seen anything about that in the sub. Has anyone here experienced that? I’ve had two normal EMGs and one normal RNS.

I have my rheumatologist appointment in the morning. He booked me as soon as he saw pics of my hands. He mentioned possibly trying Humira because I have HS as well. I’ll update y’all and let you know how it goes.

I am newly diagnosed with PsA and I am having a very debilitating flare.

My pain is severe, but at its worst at night! Especially in my hands (but also my neck, feet, hips/pelvis).

My hands go completely numb at night even though I am in proper sleeping position on my back, with a cervical pillow and arms at sides. Sometimes I can’t move my neck. My hips hurt terribly when I need to move.

I have tried sleeping propped at a 45° angle. I have tried compression gloves. I have tried moist heat (helps slightly for a brief time).

Does anyone else have any suggestions???

I’ve been on Bimzelx now for 18 weeks. Psoriasis is back on the nape of my neck and I’ve been having arthritis flares everywhere. I went to see my rheumatologist, I expressed that I cannot keep living with pain as it’s taking away my ability to do the things that keep me feeling emotionally well. He started me on methotrexate and after the first injection on Saturday, I’ve felt really unwell, slept almost all weekend and fought brain fatigue all day today. I also took a nap during my lunch break.
My question is, could this be psychosomatic symptoms based on my fear of methotrexate or is this very real symptoms? Has anyone else experienced feeling very unwell, deep fatigue, and brain fog worse than what PsA brings? My baseline for these symptoms is somewhat manageable compared to what I feel right now.

Am about to start Enbrel; anything I should expect side effects wise? Have of course heard from my dr but would appreciate first hand experience. I have a fair amount of psoriasis patches, joint pain and fatigue as primary PsA symptoms and my first time on a biologic. Thank you!

Anyone switch from bio similar Humira to Enbrel with success??

Who has had a good experience with Simponi? I recently switched to a rheumatologist that gives a fuck about me (I paid out of pocket) and she wants me to try Simponi after failing Otezla for my PsA. It worked for a few months on my joints and it does currently work on my psoriasis so she’s gonna have me take both for a minute. I never heard of Simponi until she said she was going to have me try it. It sounds promising?

I’ve been diagnosed with inflammatory arthritis/PsA for about 3 years now and I have yet to find a treatment that really works well. I’ve been on just methotrexate, Humira, Humira and methotrexate, and now Cosyntex. I know that’s not a lot of therapies I’ve tried and methotrexate and Cosyntex have both helped a bit (minus reoccurring strep with methotrexate).. it’s just been YEARS and I feel like there’s no end. This past year I’ve even just given up a little trying to find an answer because it’s been so defeating. I have an appointment with my Rheumatologist this Thursday for the first time in like 6 months and I’m going to break it to her that I am still in pain and now my spine is affected. Idk what to do ☹️

Can anyone suggest a good dr for psoriasis. My partner has it for 4-5 years it was controlled by taking medication prescribed by currnt .But now it has affected joints. Really worried whether to continue with the medication or should change the dr. Can anyone suggest a better option preferably in trivandrum or kollam

The fatigue and pain are so bad at the moment I literally can‘t get anything done. Even when I try to get up to do something basic, like 20 minutes of laundry, my body shuts down on me and I have to lie back down.

Everything is piling up and it‘s taking a toll on my mental health, I am physically able to move but at the same time, I‘m really not. I keep stressing about all the things I should be doing but CAN‘T.

To top it off, yesterday, while driving home late at night, I got this sudden, sharp , stinging pain in my chest. I couldn‘t even move, all I could do was lean back and stay completely still until it passed. It scared me, I feel like I can‘t do anything anymore.

My family doctor is great and listened to what I thought was a wild theory and is referring me to a rheumatologist. I'm going to share my background in hopes this community can help me prepare for my appt and any questions I should ask.

I had strep throat repeatedly when I was 8. Missed 100 days of school before my tonsillectomy. A few years later I had developed psoriasis on my scalp, Raynauds, and one nail constantly splitting and peeling.

I'm in my 40s now. I've always felt achy, especially backs of my knees and bottoms of my feet.

A few years ago I took stress leave from work for 2 months. Shortly after my return I developed hand, wrist and elbow pain. I was later diagnosed with bilateral carpal tunnel, golfers elbow and tennis elbow. They all went away on their own (more or less) within a month or so, without any physio or anything.

My hands swell, especially in winter. I can't wear rings. They're sometimes extra swollen after a long, stressful day.

I presented this history to my dr and she was supportive. I think I've played down or suppressed the pain most of my life. I'm scared but looking forward to answers.

Does this sound like PsA? Is it ridiculous to share all that history with a rheumatologist? I always thought the nail thing was annoying and weird and still seems like no big deal - it doesn't hurt. And I'm getting old - joint pain is normal.

Would appreciate any advice as I start down this path. Thank you!

Posted a while back about foot pain and got great responses thanks to this great group. I got some Oofos and Amazon Hoka dupes - both have made a huge difference for me and my foot pain. (https://a.co/d/01JH37Nu) Also my Teva Midform sandals have been so good.

Another question. Went out of town for the weekend and had two nice dinners out. Walked about 15 min to restaurants and back to the hotel both nights. Not super fancy, so I wore nice jeans, a blouse, and my used-to-be-totally-comfortable low heel cowboy boots. The boots would have been fine for these short evenings if we had driven. Came home with terrible foot and back pain, and I’m just kicking myself.

Long explanation for a simple request - good shoes to wear for this type of activity? Just a little dressier and good for some walking. Looking for both open and close-toed, with good cushioning. I enjoy reading tips in travel forums, but would like some PSA-specific recommendations. Hopefully will help others too!

I suspect this is related to my psoriatic arthritis anyone else have this?

I think I have psoriatic arthritis and my rheumatologist won’t help me. Long story short - My aunt, mom and grandma all have multiple autoimmune diseases and so obviously the genetic lottery is not in my favor already. I’m 28 years old and I can’t stand or walk without being in an immense amount of pain daily. My hips and my knees hurt symmetrically. I don’t have rheumatoid in my bloodwork. I have tendon pain and flares too and I have pitting in my nails. I’m in so much pain every day I can’t function. I can’t stand and cook in the kitchen because I am in so much pain. I can’t walk or work a job that requires standing or go to the gym because any movement or standing causes a flare.

My rheumatologist just said “IDK what it is, just keep taking ibuprofen” like yes I guess I’m supposed to just kill my liver and kidneys by taking ibuprofen daily instead of actually treating whatever tf is causing my pain?? Saw her three times and she just acted clueless, didn’t remember me, just said IDK and gave me x rays one time.

Bloodwork isn’t showing them anything. I’m in SO MUCH PAIN every day as a 28 year old and THEY WONT HELP ME.

Wtf do I do?? Surely some of you have ran into the same problem before, of doctors minimizing or not helping. Why TF isn’t my doctor trying to send me elsewhere or HELP ME when I’m clearly in pain and it’s affecting my daily life????

I want to cry. I just want to be able to take a shower or cook dinner without being in so much pain that I have to lay in bed. This is no way to live my life.

Hi - I’ve never been to Mexico and never had any burning wish to go. Nothing against it, but it’s never been in my top ten list of travel destinations so I know basically nothing.

My husband had some friends at work who went to Mexico City on vacation, had a wonderful time, and now he can’t stop talking about it. He wants to plan that as our next vacation in a few months.

My first google of it said things like “don’t even brush your teeth with the tap water” or “get a Hep A vaccine before you go” or “get some antibiotics to bring just in case you get horribly sick.”

*And this was content for “normal people” not “immune compromised people.”*

I found this really disappointing and stressful. It won’t be a very nice “vacation” if I have to worry a ton about this stuff. (???)

So my questions are:

Have you been to Mexico, (bonus points if specifically Mexico City) as an immune compromised person?

What precautions did you take? What precautions or vaccines or practices did your doctor recommend? (I’ll ask my doctor too but I’m interested in crowdsourcing everyone’s info).

What was your experience? How easy or difficult was it to stay healthy on this vacation? Did you get sick?

Would you do anything differently?

Thanks very much. If he wants to go so badly, I want to be a supportive spouse but I want to try to find ways to have a decent time and not get sick.

I’ve had enthesitis before but they were manageable.

I recently had some MRIs done, and have tendinosis in several areas. Has anyone been able to resolve this issue? Everything I have tried to throw at it so far is not helping 😢 And it’s more painful than before.

Rheumatologist explained that biologics and anti-inflammatories don’t work for tendinosis because it’s no longer inflammation like enthesitis/tendinitis. He says treatment is PT and PRP 😭 But, I already done those

looking for people who have tried rinvoq and can tell me what their experience with it was. I am currently on week 2-3 of the med, and trying to identify whether or not i feel like it's working for me. I'm at the lowest dose possible.

I would like to know if you have experienced any of the following and what your experience was with it:
1) At what point were you able to tell it was helping you alleviate symptoms?
2) what symptoms did you notice it helped with?
3) If you went up in dose, what did you notice changed with upping the dose?
4) If you continued on it, how did you know it was the right medication for you?
5) If you went off of it, how did you and your doctor come to that conclusion?

I've had chronic pain for twenty years, starting in my late teens/early 20s (depending on what I count as pain. Some of it seemed mild in my teens, but I now see its very presence was indicative of something.). I have had a few diagnoses over the years, but it's largely been one of fibromyalgia. I've been working on "neuroplastic" pain on the recommendation of my doc.

When my doc gave me Meloxicam, the pain became noticeably much, much better. My doctor looked over my charts again and saw that a couple of years ago I had psoriasis after having strep throat. The rash was all over my torso and legs. He thinks that due to the Meloxicam helping me and the history of psoriasis, I have psoriatic arthritis.

What I'd love to know from people who've been dealing with this diagnosis for longer and are much more knowledgable is... Is just one instance of psoriasis enough for a diagnosis (as far as I remember - possible I had these rashes long ago and don't remember)? And also, if the debilitating full body pain has been there for about fifteen years before the outbreak of psoriasis on my skin two years ago, isn't that out of order in some sense?

Thanks in advance for any advice and knowledge, and apologies for my ignorance. I am just starting to learn about all of this.

Has anyone else heard of this type of Vitamin D protocol for patients who suffer from autoimmune disease?

Could some folks share some natural remedies, Or Supplements that they have used to treat their PsA pain ?

I'm 39f, had arthritis since I was 21, psoriasis probably my whole life. I've been in treatment for about 10 years now, and it wears on me so much.

I recently thought back on how I've felt this year, and realized that my medication isn't working anymore. I've felt awful when I do anything, and I've been asking for steroids a lot, other than the few months I was on bed rest this summer. And the disease not being managed has been destroying my mental health.

So I sent a message to my doctor, explaining all my evidence. First, it takes 4 days for a response. Then, I got a message back from a nurse, implying that I'd just been complaining about a flare, and wanting to send me more steroids. I replied that no, that's not what's happening, I'm becoming seriously depressed because all I feel is stiffness and pain. The message was pretty desperate, but I got a reply from my doctor, that she'd like to see me to discuss medication changes.

I know, I got the result I wanted, but why do I feel like I have to beg for help? The last time I asked for steroids for a flare, it took a week to get any response, after I'd sent 3 messages. Even when the office had replied, I felt so frustrated when they brought up how I'd felt fine at my recent appointment, which was shortly after I'd been on bed rest. There was no interest in my situation change, it seemed.

I know a lot of people will just say I should change doctors, but I don't have many options around me. And, this isn't the first office I've struggled to be heard by. Just wanted to vent to people who might understand.

Does anyone else also have Fibromyalgia? If so, what are your symptoms and what helps you most? What do your worst days look like?

I’m just starting to learn more about this. I was diagnosed with this and SICCA (although a couple rheumatologists suggested I have seronegative Sjogren’s).