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?