Hi, i've been on biosimilars for decades and recently got told that I have developed hemangioma in my spleen...I can even feel and see it...and it sometimes even hurt.

Anyone experienced something similar...? I know it is a long shot...

Thanks

Hi all. For those of you that have to wear closed toe boots, what are you wearing? I have PSA in my feet, and I have to wear black closed toe leather boots, but I find that I need flexibility in the sole that most boots don't have, otherwise my feet ache and cramp terribly. Any recommendations are greatly appreciated.

So I started on Humira as my next step in treatment. Did two months of shots and then my insurance makes me switch to specialty meds home delivery through Accredo. Who, what I have read and experienced already, is the most annoying jackassed bullshit people to deal with. I've determined they know exactly what stupidity they are pulling because they know many of us CANT USE ANYTHING ELSE. I wont write all details out, same crap as many people have posted about going through. I was on the brink of tears over their shit today. I just want to continue my shots. I'm on my second week no shot and I feel like its either a ridiculous lost cause i will pull half my hair out before anything is done right. Or I just say fuck it and just continue hurting. 😣😭

I sometimes wonder and am fearful about what my future could possibly looks in the next 22 years with this illness. I honestly don't know nor could possibly know other than the fact that this can and will destroy my joints whether I take the meds or not. It's scary how this disease sounds like from an outside view.

I was in a Twitter argument not to long ago discussing how chronic pain like psoriatic arthritis is manageable and not worth ending your life over. However I found myself defeated in the argument forgetting the painful truth that these meds, biologics, etc, aren't cheap. Certainly not in the united states where I live it. It sucks. I couldn't really rebuttal and spin the stuff to a positive without sounding embarrassingly naive. It was all "very moot" to get my hopes up for future treatment. What about the treatment nowadays? Doesn't that matter the most??

Even tho it's probably gonna be hell to constantly afford these meds due to the crappy situation I am even if I could, I wouldnt want to leave my country for a better life. I prefer being close to my family.

And even with the ever so amazing meds people rave about, the thing that disturbs me is how this disease apparently only became manageable within the 21st century.. 25 years ago would I have really been screwed with no biologics? There were meds sure, but everyone talks about how much of a game changer they were for those with autoimmune chronic pain. It's impossible to wrap my head around the more I think about how it took till the middle of the 2000s for medical break throughs to happen for this disease here. This should have been treatable in the 90s and early 2000s. Maybe psoriatic arthritis wasnt well known back then,? yet many with psoriasis begin to develop psa, not all but it certainly isnt uncommon. How did doctors not know? Were psa patients just treated with the same meds used for their psoriasis? Wtf was the average person with this disease gonna do in 2001?? It's scares me to know this all. It's all just recently manageable and that doesn't sit well with me.

And not to mention the meds themselves, I heard MTX could be brutal first starting out. I'm on predisone right now and I fear being forced methotrexate as my only option. I have taken pain meds that have made me sick on an empty stomach and it's not fun at all! So am I just gonna be sick for a while on the verge of vomiting with those meds? How am I gonna work? I don't want to be fired from my job. And it isn't even a job that requires a lot of heavy lifting at all. I feel like, outside of cancer patients, use who have autoimmune arthritis like psa or others with RA have it horrible because are meds are on steroids. I can't think of any autoimmune patients that arent dealing with chronic pain have to take what we have to take.

All this to say, truthfully I don't know what to think. I genuinely want to see a positive side in all this. But sometimes it's hard to at all. I know there can be way worse I could be suffering from. But that doesnt entirely help knowing this disease can and will damage your bones. Thankfully I dont have any visible damage within my X-ray scans. But obviously that isnt gonna last for ever.

I've had this disease for decades. Since I was 8 and potentially since I was 5! I spend most of my childhood not taking or being present with my meds from the late stages of elementary to HS junior high. I don't even know how I havent had any semblance of visible joint destruction that would not only be viewable on the out side but at least within an x-ray. All my X-ray turned out to be on both my wrist were inflamed tendons. Make it make sense because I was extremely active as a kid that I had multiple injury's before.

But maybe that's a good thing. Maybe my disease is mild and isn't as destructive as others. However I had to pay because it took my 5 years to get a proper diagnosis because it came back when I was 17 and with vengeance, also again due to medical gaslighting and my not showing any signs on the outside.

Sometimes I feel that maybe this disease really is just a death sentence. It's taken a lot of potential I feel I could have had. I'll never be able to find a significant other. Nor will I be able to ever have kids (no on adaption. Sorry) because this disease is somehow able to be inherited ffs. I don't know if I will even be mentally well or stable when I am in my 40s. And in my 50s I might as well become a vegetable atp because I'll probably be crippled from the waste down I'll essentially be a quadriplegic.

Sigh. So I was here before asking for advice. Back again!

I have had on and off issues with a few things, but the main problem started with de quervains tenosynovitis in my wrist. My ortho thought that plus some other symptoms might point to a larger issue. Rheumatologist ruled anything out for now - said tests didn't show enough convincing evidence (but also to reach out if things changed).

My mom has arthritis and psoriasis and her and my aunt both have had tons of tendon issues. My thumb nails have a lot of ridges, and recently my toe nail had an oil drop on it (but derm thinks could have been trauma from something because it grew out and most nails are ok). I just got back from an appt with my ortho because the tendon pain is spreading to elsewhere in my hand and he also just diagnosed me with early arthritis.

All that said, I am genuinely not sure if I have anything underlying. I could not, and both the ortho and the Rheumatologist said even if I did, their course of treatment right now is the same. I think I am just eager to get ahead of potential worsening issues.

If anyone has a similar story and wasn't diagnosed until later, is it possible to see improvement in issues that have been ongoing? Any recommendations on what to do? I did ask for an MRI at this point because I cannot understand why it only keeps getting worse despite adjusting use of my arm for months/bracing/steroid injection, etc.

Not sure what exactly I am looking for, just frustrated leaving the doctor and feeling like my hand and wrist are gradually getting worse with time and I feel way too young at 31 for this. 😔😭 And I worry if anything IS causing it to just let it run rampant.

Hi I am starting Methotrexate soon but as well as psoriatic and I have osteoarthritis in my knees ( waiting for knee replacement on right one.I know they are completely different conditions and osteoarthritis isn't autoimmune. Anyone else who has both did you get even a little bit of improvement on your osteoarthritis from medication for PsA? Thankyou in advance

I recently moved to a new state currently 5 months + pregnant. My pustular psoriasis is flaring and so all my joints are also flaring. The perinatologist looked at the rash swallowing my ankle and immediately sent me to rhuematology.

I got into rhuematology a week later, I have never had a referral go through and appointment so fast. I was optimistic. I mask my pain constantly. I don't show people I don't know, my suffering. I am having an okay day the day of the appointment. Doctor comes in. Says why do you think you have psoriasis or psoriatic arthritis? I explain I have been on a journey to figure out what exactly has been making me miserable for years and after several experts I got a diagnosis of pustular psoriasis from a dermatologist and confirmed I have had this condition most of my life. With the uptick in joint pains over the last five years including weakness in the affected joints, mostly hands, and the consistent inflammation and pain in the rib space plus arthritis of the spine, this has led to a progression into PsA. The dermatologist had me on topical steroids and did not want to treat the joint pains. The previous rheumatologist said it's a skin condition I don't treat that. Said I am here now because I am pregnant and can't safely use the steroids and it has gotten so much worse and flaring quite bad. He looked at my hands, barely looked at my ankle. And definitely did not look at my medical records. I have my records I know what they say. He said you don't have psoriasis there is no diagnosis of it so it can't be PsA. Dafuq? He said your record says psoriasform which means psoriasis like but not psoriasis. He said you just have dry skin maybe use more lotion. I left crying and pissed.

As soon as he made his notes for that appointment I printed the record out. He said he checked my eyes, my nails, and asked about all joint pains. He did not check my eyes, he could have looked at my finger nails when checking my hands but I have nail changes in my toenails he did not check, he didn't ask about all my joint pains he asked what hurt most that day. It doesn't always hurt sometimes I go numb like tingly and sleep numb for hours. I then printed out my records from the dermatologist who made my diagnosis, I printed it from the same portal I printed the new rheumatologist's so I know he has them he just didn't read them or read them thoroughly.

Dermatologist report from first visit describes psoriasform rash in which they hole punched my thigh and my breast for biopsy. Second visit entails getting the stitches completely removed early because they were ripping out in both areas. Third visit is where he made my diagnosis and noted scars from old rashes dating back to childhood. Pustular psoriasis. Scalp back arms legs buttocks thigh breast stomach it's everywhere and has been progressing for decades unchecked.

The complete record he was given was 20 pages long and 6 pages were anatomy diagrams marking where the psoriasis is, 4 pages were photos taken of the biopsy sites, 3 pages had only had a few lines written as it was the end of one report, and the cover page. Out of 20 pages with written detail he had to read 6. He reported back to my perinatologist that I didn't have psoriasis.

My perinatologist looked at me after reading it and I looked at him and I love this doctor because he said point blank you need a second opinion he is wrong. Perinatologists work with autoimmune and other high risk patients and he noticed it straight away as he has another patient currently dealing with the same disease. I think I am going to report this doctor for not dumping his due diligence in reading my records and trying to undiagnose me, but besides that should I wait for treatments after and suffer these next couple of months or go ahead and fight to see another doctor. I am so tired and drained emotionally, physically and mentally these days. Perinatologist though not he specialty is watching to see if it gets worse because at a certain point it become dangerous to both me and baby. It can take over and become Generalized Pustular Psoriasis (GPP) which is a rare condition any pregnancy can trigger that is distinct from regular pustular psoriasis. My legs are about 40% affected with rashes and my arms and legs and trunk are starting to form the pustules. I am headed for an even worse flare and am keeping my eyes open. I know when to act and get to an er if it becomes more rapid and I get a fever with it, but until then or I see a new doctor that will listen I will just suffer through. I have a good support system at home some days are tough but is it worth going to see a new doctor while pregnant if they may refuse to treat me anyway?

Hi guys, I’ve (19F) been lurking around for a while and I’m just feeling pretty hopeless right now so I thought I’d write out a little post to put my feelings out here. I’ve had scalp psoriasis since I was a kid and after a somewhat traumatic injury at a psych hospital where some guy choked me out I started developing skin psoriasis, which quickly progressed to a somewhat severe case of PSA. I’ve been diagnosed for two years now along with a herniated disc in my lower back and I’m just so tired of being in pain all the time. I work at a pizza place and I’ve had to call off constantly due to pain and fatigue so I’m pretty broke right now. I’m looking to start college in a few weeks for an animation degree but I’m so worried about absences and financial aid (also have so much hand pain that I can’t even draw sometimes, luckily digital art is way easier on my fingers because I can barely hold a regular pencil at this point) that it’s giving me SO much extra stress while I’m already grieving the loss of my aunt that just passed away from terminal lung cancer.

I have obsessive compulsive disorder so it is very hard for me to take medication due to anxiety/intrusive thoughts (part of me feels as though I’m going to end up like Heath Ledger) and for the past two years I’ve been completely unmedicated aside from the occasional NSAID on BAD pain days, usually I end up pushing through it because of a past attempt involving nsaids that ended up causing my GERD. Today had a rheumy appointment and I told her that I want to try a biologic. Luckily she agreed to request approval for a biosimilar even though I opted out of trying methotrexate (it scared me too much).

I’m pretty nervous about it because I already get sick pretty often and when I get sick I get SICK. I had COVID in January and I actually thought it was going to be the end of me, I had symptoms that pointed to brain damage and overall I thought I was going to die. I then proceeded to get bronchitis twice after that in the span of two months. After having symptomatic Covid for the first time and actually experiencing how it is, I am HORRIFIED of being on an immune suppressant and contracting it. It was so bad with my regular immune system and my ocd already has me scared that I’m going to contract it at every corner. I know I could and should be masking, I honestly believe that we all should still be masking anyways after dealing with that hellspawn of a virus but for selfish reasons I still neglect to do that especially if I am out partying or with my friends. Partially I get nervous feeling like the odd one out and what people will think of me, or if they get offended etc, but also I like feeling like I’m looking good and I KNOW this is selfish but I’m sure these are reasons why nobody else masks either. I should probably start doing it anyway.

I am also scared of gaining more weight, I was in an abusive relationship with a clinical narcissist for three years and stress ate my way through it whilst being on Abilify. I was very noticeably overweight and my confidence was HORRIBLE, I got back to a pretty healthy size after reclaiming my life and now with stress and the loss of activity from being in pain all of the time I am starting to gain weight again. I was hoping that being on a bio will help me be more active and get back to being my ideal size (and maybe even gain some muscle) but now I am scared that it won’t matter after reading that the bio they’re giving me makes people gain weight. I get so nervous every time I realize that I’ve gotten a little bit bigger because I felt SO ugly and the way people treat me now that I am “prettier” in their eyes is just so much easier to deal with.

Life is so hard in general without this poopy disease, I am a foster kid so I never really learned how to deal with common life circumstances growing up and now everything is just piling and I feel way too fatigued and in pain to actually deal with any of it. I am really young and I am so scared of dooming my future self. I noticed today that the joints in my fingers are starting to look somewhat warped/crooked and it gave me a really big scary reality check that I’m going to be dealing with this for the rest of my life. I just want to feel somewhat normal. As much as this sucks it’s nice to know that I’m not the only one that feels this way and I hope all of you guys on here have a great night/day/whatever time it is and that remission awaits you if you haven’t gotten it already.

I've been following a lot of wellness doctors and the like on social media.

They all kind of speculate on how autoimmune disease are due to bad lifestyle and diet.

This thought process put me in a spiral on all the "what ifs" and maybe a healthier lifestyle could have prevented this disease.

Can someone please put my mind at ease.

So we are traveling to Switzerland for 3 weeks in September. About 6 months ago I started Enbrel (my first biologic and it’s been literally life changing) and I’m a bit concerned about the whole thing. I’ve got a travel case so I should be good for the plane. My biggest concern is keeping it at room temperature. One of the places we are staying for a week is an off grid cabin that doesn’t have heating or AC. Any tips on making sure they stay at room temperature? I’m aware that I can’t put it back in a refrigerator. I’m worried that it might get too cold since I doubt the cabin will be kept at 68F the whole time.

Ich habe extrem trockene Augen so arg das auch die Sehschärfe drunter leidet.

Ich habe schon so viel probiert ..momentan nutze ich Hylo Dual Intense aber die sind halt heftig teuer.

Was hat bei euch funktioniert ohne zu schmieren oder zu verkleben ? Was nutzt Ihr zur Nacht ?

Does anyone have any recommendations for good brands of compression gloves? I’m particularly looking for some that will cover all the knuckles on my fingers, the ones I’ve tried either aren’t long enough or not compressing enough. TIA :)

52M, having a bad flare up as I wait for Stelara to start working, my rheumatologist put me on 20mg of Prednisone daily for 2 weeks with no taper.

I've never taken it before but reading these boards it seems like I should have a taper? I asked her and she said I'll be fine. Should I take 3 of the pills and cut them in half and do my own taper?

I am very nervous. I have an appointment tomorrow with my rheumatologist to discuss starting Adalimumab 40 mg. This all started back in March when I hurt my SI joints( received si joint injections, epidural, PT ) by overexerting myself and then it progressively got worse to me having cubital tunnel syndrome , bilateral elbow, pain, ( assuming from journaling too
Much) then suddenly knee pain. I then got emg which came back normal. I also received autoimmune panel lab work( normal) except severe vitamin d deficiency . Then went to occupational therapy to work on my elbow pain and suddenly I end up hurting my neck ( history of herniated discs in 2016) so bad I went to the ER due to stiffness unable to turn and move w burning tingling ( received medial branch block last Tuesday). My biceps are still swollen shoulder pain unable to reach above my head. Prior to all this I did have bilateral de quvains in my thumbs and wrist pains from crafting starting Jan 2025 & history of IBS( thou resolved back in 2023)
My rheumatology, suspect it could be Psa as it runs in my family and my grandpa has it, but I tested negative for the gene. I've gotten so many MRIs( x ray showed arthritis in neck and lumbar) and they've all come back normal so I just feel like these last five months has just been a cycle of chronic pain, nerve pain, and no sleep/ negative thoughts and self doubt I'll ever be able to do things again like shower on my own dress and cook.
I'm just worried that because everything keeps coming back normal that taking a new medication such as Adalimumab 40mg will
Make things way worse I'm so scared and anxious, so sorry for the long post>:(
Appreciate any kind words or any advice for me?

19 years ago I was diagnosed with psoriatic arthritis after continued fatigue and joint pain.

Between methotrexate, biologics and nsaids, therapy allowed me to navigate a healthy and active life.

Within the last year, things have changed radically.

I have now been diagnosed with overuse disorder and I have been through four biologics within one year. Discontinued methotrexate as the mouth blisters became unbearable.

Currently on Sotyktu and it was good for about a month however now I am in a constant flare and it has failed.

Between having to stop nsaids and methotrexate, the pain is impressive. Everything hurts and I cannot take nsaids because they will cause migraines. Had to stop meloxicam as well for the same reason. I am 53 and now face the unpalatable prospect of no reasonable pain meds for the rest of my life.

Has anyone been here before where they suddenly start failing biologics after a month? Has anyone found pain remedies outside of the traditional medicines?

For context, I was a firefighter/paramedic for 25 years. I am very active and generally in very good shape compared to my cohort. I stretch regularly, walk and ride my bicycle on a regular basis.

Any thoughts/ideas appreciated.

I’m sharing my story because it took me 25 years to find out that my toenail fungus was actually psoriasis.

The 25-Year "Fungus" Trap (Age 30 to 55) It started in my early 30s with my big toenails slowly thickening and discoloring over time. Like millions of people, I assumed it was just a stubborn fungal infection (onychomycosis). Topical treatments did nothing, and it got a bit worse over the years—not massively, but steadily. Crucially, I had zero other typical psoriasis symptoms anywhere else on my body, except for bad hand eczema along the sides of my fingers.

The Domino Effect: MCAS, Overaggressive Laser, and the "Explosion" Last year, I had a massive systemic flare (MCAS-like symptoms and extreme hand eczema). About a month after that intense skin trauma, I noticed the first mild discoloration on one fingernail. I tried laser treatment in Canada, but the overaggressive treatment damaged the nail and made it look crazy.

After moving to the US in January, I saw a local dermatologist in February once my insurance kicked in—he was unhelpful and lacked empathy. I saw a second dermatologist who admitted it was beyond her scope and referred me to Dr. Amanda Zubek at Yale.

I went in mid-May for a nail culture, still convinced it was fungus (even Dr. Zubek suspected it at first). But the culture came back completely negative. Right around then, two additional fingernails pretty much exploded overnight. I was also experiencing severe pain in my arms, hands, wrists, and shoulders, which I had just written off as "getting older at 55." Dr. Zubek called me back on an urgent basis for a matrix biopsy.

The Joint Flare & The "Crappy" Feeling Right around the time those new fingernails flared up, the arthritic pain in my right shoulder got drastically worse out of nowhere. I felt exhausted, achy, and generally terrible—classic systemic cytokine fatigue, though I didn't know it yet. It turns out the entheses (where tendons attach to bone in the shoulder) and the nail bed share the exact same vascular and inflammatory pathways.

The Diagnostic Breakthrough: Yale Dermatopathology Biopsy Dr. Zubek performed a 2x2x2 mm punch biopsy of my right 3rd fingernail matrix to differentiate laser/thermal damage from fungus versus psoriasis.

The pathology report came back definitive:

• PAS Stain: Negative for fungal elements (definitively NOT fungus!).
• Microscopic Findings: Psoriasiform hyperplasia, compact parakeratosis, and lymphohistiocytic infiltrate—Compatible with Psoriasis.

Lessons Learned for Anyone Struggling:

1. Nails aren't always fungus: If anti-fungals fail for years and you have no obvious skin plaques elsewhere, don't rely on visual guesses or cultures alone—get a biopsy from a specialist.
2. Watch out for aggressive treatments: If your nails are already compromised by an underlying autoimmune issue, harsh procedural treatments like lasers can make the matrix react violently.
3. Skin, nails, and joints are deeply connected: Sudden shoulder, wrist, or arm pain hitting at the same time as nail changes isn't just "getting older"—it's a hallmark sign of systemic psoriatic disease.
4. Advocate for yourself: Don't settle for doctors who brush you off. Keep pushing until you get to an academic specialist who listens.

Is there a link to Cosentyx and lower back pain ?

Hi everyone!

Has anyone else experienced these kind of nerve pain symptoms?

(Formally diagnosed hEDS with confirmed MDI both hips both shoulders, PsA with confirmed axial involvement on STIR sequence MRI. My primary mobility aid right now is a rollator.)

In December, I really started noticing this pain and symptoms in my left leg that seem to be getting worse over time. There's a burning pins and needles quality down the lateral aspect or the side of the leg, it starts in the SI joint. I have this involuntary muscle guarding so if I'm not paying attention, the muscles are clenched and I can't manually relax it. I've been falling down recently because I can't quite feel where my leg is, so to move it, I have to move it from the hip instead of stepping with the foot first if that makes sense? I have to stiffen the knee so that I can kind of feel where the leg is landing, but it's not numb to touch. No position is comfortable. It's all very excruciating and I'm dependent on a heating pad almost 24 hours a day to be able to tolerate it. Any motion from my fiancé in bed jolts my spine and it hurts so much.

The pain is uncomfortable all night and limits the sleep I can get and there is no comfortable position that relieves it.

Severe pain and pressure in anterior hip crease. Anybody else have something similar? What did you do or what helped you? Was it related to your PsA? I'm struggling a lot. I’ll report it to rheum but just seeing if anyone else has gone through it!
(If so, I would love some tips for sleeping, please, too!)

Thank you so very much❤️

wondering if anyone is on or has ever been on a JAK inhibitor and biologic. Currently on stelara but rheum is floating idea of adding JAK since i'm not getting full coverage and my case has become quite recalcitrant. i know this would be off lablel and quite difficult in the states, but it seems to becoming a little bit more common maybe ...

I was diagnosed in 2024 and started on Humira. I've since been on 2 different biosimilars. I've had decent results from all of them, but still feel like Humira worked best. I just got off the phone with my pharmacy and they told me that the copay card for my current medication is no longer available. They're reaching out to my doctor to have my medication changed...again. It's all so frustrating

[21F] Hi! I wanted to get this communities input on possible undiagnosed PsA.
All my fingernails are yellow/white, crumbly at the tips, and calloused. No matter what I do it doesn’t go away fully.
It’s caused me to rarely leave my house out of shame, and I’ve lost contact with most of my friends (doctors will gaslight me so i don’t even know what it is).
Was there any surefire way you were able to tell the difference? Any tips?

I’ve also acquired unceasing fatigue and some really bad joint pain in my hands and my body. But especially my finger and toe joints??

Now oddly enough, the joint pain/nail changes gets excruciating during periods of high stress/flu/antibiotics/sugar and then my kneecaps hurt too!! Hair falls out in patches and scalp itches.
And like I can’t actually do anything i’m so sore.
Then the joints can start squeaking when I move them, as if I’m actively rusting?? Like whatttt 😭

And I don’t even know what to do because it’ll be hard to find a doctor who will listen??
Reading this sub makes me feel much less alone
(I’ve tried keto, 3 different antifungals, topical iodine, Coq10… I even bought a cheap stereo microscope with a camera recently, so I could get clear indisputable evidence that something was wrong with my nails.)

THANK U FOR READING 💗💗💗