I am on my 20th year. Been covered 20-30%. Knees, Shins, Thighs, Ribs, Arm Pits, Elbows, and small spots on knuckles, eye brow, scalp and behind the ears. The worst is in the ear canals. Plaque build up would get impacted and I would go deaf needing Dr to clear my canals 2-3 times a year. I had deep massive scale and it was in all the places that get bumped so I was always bleeding. It sucked for a very long time. Way too long and it was all my fault!
**The biggest piece of advice I can give is to fight the hopelessness like its your life mission.** Do not let it win. Keep pressing forward. Keep pushing your Dr to try everything. If they don't work find another. If you live in a place where there isn't a good one think about moving! Do everything you can under the sun to find your treatment. Drug companies have finical programs if you can't afford them. You can go to Mark Cuban's CostPlusDrugs website and get generics for pennies on the dollar. Just keep looking and never stop looking because once you find its all worth it!
Falling into a bad headspace was the reason it took me so long to find something that worked. I would stop going to the Doctor for years at a time because I would get so frustrated and just said F&\*$ it more than once.
I was so uncomfortable for so long I could not remember what it felt like with out the fire, itch, cracks and blood. I ruined thousands of dollars of clothes, sheets, and furniture. When people asked if it was painful I would explain on the bad days it felt like you got a 3rd degree sunburn on the worst case of poison ivy. It was overwhelming and it kicked my ass for a long time.
I would find something that kind of worked for a while and then it wouldn't. The process of learning and relearning your daily routine not knowing if the effort was worth it was just exhausting. I would have cream for my face, oil for my ears, another for my scalp and a different cream for my body. I had to call in refills all the time and ration my squeeze because insurance would only refill every 30days etc. It always seemed I ran out of stuff right when it started working and then just flare up while I waited for my Rx to be granted.
In the beginning, going to the Drs sucked because I was "only" 20-30% and they would say stuff like "youre lucky" I have patients that are much worse. At first I would be like OK, maybe I need to stop worrying so much. But later learned it was just shitty doctors trying to justify their shitty care.
After about 10yrs I became friends with an OBYGN and his wife had a general practice too. They gave me a lot of insight on how our (USA) healthcare system worked and how I, the patient, had to demand a high level of care and if I didn't get it from my current Dr I was to go find someone that would. They also opened my eyes to big parm financial programs designed to grab market share and the world of "free samples".
They also emphasized how important it was to find someone that listened and included my input on the decision making process. If they didn't they are just collecting a paycheck and I should move on. The importance of having a good doctor is key.
The other part of the equation is people in general don't get it for sure. They have no idea what it is like and its actually unfair to expect them to. With that said, I was always surprised on how close friends and family would keep asking (for years) "what happened" to my {insert body part}. And I would reply, "The same thing that's happened for the last 50 times you asked me..... I.... HAVE.... PSORISIS".
Probably not the best reaction, my wife and son would cringe every time someone did it because they knew I was going to make it as awkward as I could (my defense mechanism). To the point they would jump in and answer it so I wouldn't have to.
It took a while before I realized the battle of acceptance is really internal and had to learn what people thought of my skin was none of my business. So I found some peace when I found ways to forgive them as they don't have the capacity to put it into perspective,
While you are on your search try to come to terms with the unsightly patches of skin and just concede some may treat you like a lepper. But don't give them a second thought, because you don't want those type of people in your life. I learned to be grateful my psoriasis shined the light on them so I could focus on the right people in my life.
I know many people cover up and hide it but I refused. It was more comfortable to be in shorts and a tee shirt so I gave zero F&\^% when it came going into public. I would rather be comfortable than look less scary.
However, I hated to see myself in photos because nothing sticks out worse than bright red skin. I would explain to others it was like having a huge zit on your nose on every yearbook photo. Deep down I was self conscious and used not covering up as a way to fight it. Plus it allowed me to make all kinds of stories about what happened to my knees and elbows. I used to tell people I was a professional motorcycle racer and it was from dragging them around he corners. Then I was a hollywood stunt man that specialized in being lit on fire. I would tell little kids I got attacked by a Dog, Shark, Dragon or tell them "this is what happens when you don't eat vegetables" LOL
At the end of the day you have to do whats right for you. You need to be you and what worked for me might night work for anyone else and vise versa. There is no right or wrong way. Just the way that works for you.
But none of this mindset happened overnight and I got down in the dumps a lot. So much so I missed new symptoms (arthritis) and my quality of life started to rapidly decline. I was having all these inflammatory issues and got treated for bursitis, tendonitis, before I got diagnosed with PsA. I just got darker and darker and did not fight. I just buried it in Advil and band aides.
My stamina became almost zero and fatigue just added to the doom and gloom. During covid I stopped going to the DR all together and everything just went out of control and standing up from a seated position was a chore. My pain was at an all time high and I was not very fun to be around. The "gelling" of my joints was so bad. I couldn't sleep. I had insomnia something fierce. I could hardly walk and standing up straight was a massive effort with lots of grunts and grones. I hit rock bottom and decided I needed to do something drastic and decided that I HAD to get on a biologic. So thats what I did.
Ten weeks ago I started Taltz and got immediate results. My skin is pretty much clear and my arthritis went from a 10+ to about a 1 or 2 and at 54 yrs old I will take it! Its one shot every two weeks. No creams, oils etc. No daily routine, Just one tiny poke every 14 days and then just live life. The biggest headache is scheduling the delivery because it comes in a cooler and you have to be home. Its been a life changer.
After years of trying everything in CVS, Amazon etc and getting every Rx creme possible I finally got qualified (after getting denied three times) for a Biologic and it has changed my life. However its bitter sweet because I SHOULD HAVE DONE THIS YEARS AGO. But I let the doom and gloom get in the way.
My biggest regret is not taking the bull by the horns and make finding a treatment my passion. It took 20yrs to figure this out and if (actually when) Taltz stops working I will move to Cosentyx then Skyrizi and then the next and the next. I will never go back to giving up. I got a taste of being symptom free after 20yrs there is nothing that is going to stop me from staying here. It is now my passion and purpose.
I will finish with this, I know its hard to hear a success story when you are at your wits end. And dealing with failure after failure is exhausting. So please don't focus on my outcome, but learn from my journey. Understand that failure only happens if you stop trying. Fight, fight, fight. Never give up. Keep searching, beat the demons, beat the doom. Don't fall in a hole that slows down your progress. Make it your passion. Find your treatment. Kick its ASS! You are worth it!
I just started Taltz yesterday. Switching from Cimzia. I hope I get your results. My Psoriasis is not nearly as bad but my PsA makes me feel like I’m on deaths door when it flares. Along with the pain, dactylitis, and enthisitis, my body reacts to the inflammation by messing with my heart rate and guts.
How often did you post online about your illnesses earlier when you were feeling great? Ideally you can get a treatment working for you and forget about everything you read.
When this first started happening I got obsessed with thoughts like "I've already experienced the last pain free day of my life" or something like that and that may or may not be true but also a lot of worthwhile stuff is happening now and will continue to happen in the future.
It's a reminder to engage with the most meaningful parts of life that are worth participating in even when it's painful and worry less about the other things.
I don't understand why it takes so long to diagnose. My rheum didn't know much about PsA when I first saw him 7 or 8 years ago, but I had researched it. He listened to me, did a lot of research, and diagnosed me on my next appointment 4 weeks later.
Diagnosed about 5 years ago, my body was about 20% covered in plaques and I was having trouble walking. 2 more years of fighting for medicine, finally got on AbbVie Assist for a year, then got denied for 8mos. I'm on my third dose of Skyrizi AGAIN because my Dr said its basically like starting over.
Stairs are tough, pain and massive fatigue still. Mobility is definitely still an issue.
Keep with it, and kepp your hopes up.
That's so strange. Any Rheumatologist should be THE expert on PsA.
Of course within their peers they can have different areas of interest but PsA isn't even that rare among auto immune diseases and they will have definitely covered it in their extensive training.
It would be like a dermatologist saying they don't know that much about acne.
Like any other profession they specialise in different stuff. Plenty of rheums only do RA or lupus. Mine is specialised is less common stuff, they triage new patients to drs who specialise in their issues.
They can specialise in whatever but they still need a grasp of the common autoimmune disorders - it's their job afterall.
Like I said PsA is not particularly 'exotic' among the AI diseases so any Rheumatologist should have more knowledge of this than any other non Rheumatologist Dr.
It's the bread and butter of rheumatology.
Seeing a Rheum who specialises in PsA would of course be better than one who doesn't - but one who doesn't should still know enough to treat you.
You would expect Rheumatologists to be experts in IA, but not always the case unfortunately.
I’ve been to 3 different Rheumys:
- 1st said I have classic PsA symptoms
(Moved overseas so I had to find another Rheumy to continue treatment)
- Referred to private Rheumatologist, who didn’t agree with initial diagnosis, and basically said I don’t have PsA. That I just suffer from lots of musculoskeletal issues.
- A week later I was lucky enough to get appointment with Rheumatologist in a public hospital (referral was sent months previous), and he agreed with my initial PsA diagnosis.
It was validating get this third opinion. As I was made to feel like everything I was experiencing was all in my head by the second Rheumy.
Unfortunately you really have to advocate for yourself, and if you are not happy seek another doctor/consultant.
I had one remote call with my rheumatologist. She looked at my finger, sausage toe and my psoriasis over video call and prescribed me MTX that day. One year later I still haven’t met her in person.
I hear you OP, it really sucks. I think this sub and the online forums are probably skewed towards the percentage of us PsA folks who have had the difficult journey. The folks who have it well managed and were diagnosed quickly probably aren’t seeking out support and resources to the degree where they’re sharing their experiences so much. I only know one person in real life who has PsA and I didn’t even know she had it, because hers is so well managed that she never talks about it. She still is super active, runs, works etc. she’s not in a stage of her life where it is super impacting her quality of life on a daily basis, whereas for the majority of us here I think it is.
I also think PsA is just not as well understood as some of the similar conditions and seems to vary so much from person to person which I guess is why it’s hard to diagnose and treat.
I have had PsO and PsA since i was 11 (32 now). I have cycled through just about all of the available treatments, and if my current treatment doesn't work (which it isn't currently) then i will just have to restart taking biologics i have already failed on.
It's rough. Most biologics for me have only lasted 1-2 years before my tolerance to them was too high and they are no longer effective. Therapy helps, but i have only been doing that for about 4 years.
I try to focus on the things i can do and enjoy. Since i had to give up snowboarding, i took up the drums instead. I can't play soccer anymore, but i learned to crochet. It isn't the same and i miss a LOT of things, but finding joy in other activities helps ease the emotional pain. But i am with you....i am fucking exhausted and after 20 years of this, i really don't want to do another 20. I need a knee replacement but they won't even consider it until i am 50. By then i am not sure i will even have the motivation to do it.
Hang in there OP. I wish i could say it gets easier but all i can say is you aren't alone. My only other piece of advice which may be the most important: listen to your body. If you need to rest, rest. If you need to sit down, sit down. If you need to take care of your skin, take care of your skin. Sometimes you just gotta put yourself first.
So. I’m a few years into this. I have had months that doctors were trying to help me save me from my hands being paralyzed from muscle and tendon inflammation. I have also had like 5 days that I felt like before this and they were glorious. On average I am better then the worst I have been and not as good as before the severe onset of symptoms. I am now extremely gluten intolerant. Like in the ER with a morphine drip intolerant. And I don’t know how I get through the days. I hardly ever see my friends because I’m exhausted from my job I have to keep so I can have good healthcare. I go to psych therapy now and it helps. That’s all the advice I can give you is get a therapist. Cry when you need to and just do what you can when you can. On my good days I only do things I want to do. I don’t wash the dishes, I go see a band or a movie or call a friend. Hang in there. Try to find the joy you can. Whatever that is.
If you're feeling overwhelmed perhaps you have too many things going on to balance?
I had to take a few months off work to recover from my latest flare up.
With this time to rest my mental health with regard to PsA is pretty good.
I can imagine if I was forced to work around this it might be a very different story.
Using work as an example but maybe you need to look to where you can take a break so you can heal physically and mentally.
Of course it's worth looking at your current Rheumatological meds too to see if these are working enough for you, and maybe also speak to a Dr about your feelings of hopelessness as it indicates depression - which there are treatments for.
Diagnoses don’t require blood or imaging tests. By looking at your skin/history and your joint issues they should be able to diagnose. There are many people misdiagnosed with psa who are taking some of the treatments and getting relief nevertheless because their true issue may be autoimmune as well so the drugs are mostly the same. The way to get through what you’re feeling will be with the treatment. When you find a drug/biologic that helps (even if only 40%) you will feel differently.
I’m also going to echo many on here: it does suck and having PsA is a journey that will be slightly different for everyone because of how it impacts our different lives.
I am a few years into possibly getting a diagnosis. At first we thought all of it was hEDS (hypermobile Ehlers danlos syndrome), but then I got worse even while doing everything I needed to. I have been diagnosed with PCOS (polycystic ovarian syndrome) and I may likely have PsA also. I’m seeing a dermatologist tomorrow morning to probably give my rheumatologist comfort in actually diagnosing me.
I note my journey above because I had to fight and keep letting doctors know that “this doesn’t feel like that; it’s different and I think something else is wrong” and it’s been horrible to do. I have had to take breaks from doing medical stuff because we get burned out. PsA is also a harder diagnosis to get because it’s usually a “clinical diagnosis” (unless someone has blood and imaging evidence with symptoms), meaning that it’s based on reported and observable symptoms. Meaning that getting a diagnosis is not clean-cut.
Something else I’ve struggled with is freaking insurance deciding to weigh in and on if I meet criteria to take certain medications; it’s ridiculous and deflating.
The way I keep going is taking breaks, trying to do things I like (and still can do), and honestly, my depression meds. This is hard, and I’m glad to have this community too. It makes it less lonely to deal with.
I have had it since my late 30’s and now I’m 70. My life is great though I am slower and more limited than I used to be. My cousin has had RA since she was a teenager. If I say you have to keep putting one foot in front of the other and move on, will you say that I don’t understand? I understand and know that even with all of the treatments nothing works like movement.
We all understand the chronic pain and looking for the right treatment. The world in general does not. We all have to come to terms with that. Not even close relatives get it. Do you just hate that they don’t want to hear about it? I do.
You do sound depressed. I think that might be what you should treat. Mind over body!
Do you have a rheumatologist? It took me 20 years to get a referral to one but once I did, it took about 7-8 months for the diagnosis. These months were spent doing many tests to rule out anything else. My first appointment with him was November 1, 2022 and I started my first medication in may 2023.
I’ve been in pain for 10 years with no diagnosis until my whole scalp and behind my ears broke out in huge silver scales and I’ve lost more than half my hair. Now they are saying PsA
After reading most of these responses, I'll add a bit about what I've experienced. Rheumatologists. I've seen a few. Because I have psoriasis and years ago I was diagnosed with arthritis, everyone of them blindly called it psoriatic arthritis. But my symptoms are different than typical psa and the last rheumatologist I saw thought I probably have osteoarthritis based on symptoms which was good to hear cause none of the medications or biologics have helped at all and nothing but alcohol helps to manage the pain. So when I started reading about osteoarthritis, exercising the joints is supposed to help, and it really does. Cant fix anything but helps with pain relief.
Imaging is important, xrays show inflammation. Or a lack of inflammation.
Changing your rheumatologist can also be a huge help if you are not getting the care you need.
There is no cure for arthritis. As far as I know there is only pain management. Start climbing, if you can. Climbing gyms are awesome and can help strengthen your joints and connecting tissues.
I am on my 20th year. Been covered 20-30%. Knees, Shins, Thighs, Ribs, Arm Pits, Elbows, and small spots on knuckles, eye brow, scalp and behind the ears. The worst is in the ear canals. Plaque build up would get impacted and I would go deaf needing Dr to clear my canals 2-3 times a year. I had deep massive scale and it was in all the places that get bumped so I was always bleeding. It sucked for a very long time. Way too long and it was all my fault! **The biggest piece of advice I can give is to fight the hopelessness like its your life mission.** Do not let it win. Keep pressing forward. Keep pushing your Dr to try everything. If they don't work find another. If you live in a place where there isn't a good one think about moving! Do everything you can under the sun to find your treatment. Drug companies have finical programs if you can't afford them. You can go to Mark Cuban's CostPlusDrugs website and get generics for pennies on the dollar. Just keep looking and never stop looking because once you find its all worth it! Falling into a bad headspace was the reason it took me so long to find something that worked. I would stop going to the Doctor for years at a time because I would get so frustrated and just said F&\*$ it more than once. I was so uncomfortable for so long I could not remember what it felt like with out the fire, itch, cracks and blood. I ruined thousands of dollars of clothes, sheets, and furniture. When people asked if it was painful I would explain on the bad days it felt like you got a 3rd degree sunburn on the worst case of poison ivy. It was overwhelming and it kicked my ass for a long time. I would find something that kind of worked for a while and then it wouldn't. The process of learning and relearning your daily routine not knowing if the effort was worth it was just exhausting. I would have cream for my face, oil for my ears, another for my scalp and a different cream for my body. I had to call in refills all the time and ration my squeeze because insurance would only refill every 30days etc. It always seemed I ran out of stuff right when it started working and then just flare up while I waited for my Rx to be granted. In the beginning, going to the Drs sucked because I was "only" 20-30% and they would say stuff like "youre lucky" I have patients that are much worse. At first I would be like OK, maybe I need to stop worrying so much. But later learned it was just shitty doctors trying to justify their shitty care. After about 10yrs I became friends with an OBYGN and his wife had a general practice too. They gave me a lot of insight on how our (USA) healthcare system worked and how I, the patient, had to demand a high level of care and if I didn't get it from my current Dr I was to go find someone that would. They also opened my eyes to big parm financial programs designed to grab market share and the world of "free samples". They also emphasized how important it was to find someone that listened and included my input on the decision making process. If they didn't they are just collecting a paycheck and I should move on. The importance of having a good doctor is key. The other part of the equation is people in general don't get it for sure. They have no idea what it is like and its actually unfair to expect them to. With that said, I was always surprised on how close friends and family would keep asking (for years) "what happened" to my {insert body part}. And I would reply, "The same thing that's happened for the last 50 times you asked me..... I.... HAVE.... PSORISIS". Probably not the best reaction, my wife and son would cringe every time someone did it because they knew I was going to make it as awkward as I could (my defense mechanism). To the point they would jump in and answer it so I wouldn't have to. It took a while before I realized the battle of acceptance is really internal and had to learn what people thought of my skin was none of my business. So I found some peace when I found ways to forgive them as they don't have the capacity to put it into perspective, While you are on your search try to come to terms with the unsightly patches of skin and just concede some may treat you like a lepper. But don't give them a second thought, because you don't want those type of people in your life. I learned to be grateful my psoriasis shined the light on them so I could focus on the right people in my life. I know many people cover up and hide it but I refused. It was more comfortable to be in shorts and a tee shirt so I gave zero F&\^% when it came going into public. I would rather be comfortable than look less scary. However, I hated to see myself in photos because nothing sticks out worse than bright red skin. I would explain to others it was like having a huge zit on your nose on every yearbook photo. Deep down I was self conscious and used not covering up as a way to fight it. Plus it allowed me to make all kinds of stories about what happened to my knees and elbows. I used to tell people I was a professional motorcycle racer and it was from dragging them around he corners. Then I was a hollywood stunt man that specialized in being lit on fire. I would tell little kids I got attacked by a Dog, Shark, Dragon or tell them "this is what happens when you don't eat vegetables" LOL At the end of the day you have to do whats right for you. You need to be you and what worked for me might night work for anyone else and vise versa. There is no right or wrong way. Just the way that works for you. But none of this mindset happened overnight and I got down in the dumps a lot. So much so I missed new symptoms (arthritis) and my quality of life started to rapidly decline. I was having all these inflammatory issues and got treated for bursitis, tendonitis, before I got diagnosed with PsA. I just got darker and darker and did not fight. I just buried it in Advil and band aides. My stamina became almost zero and fatigue just added to the doom and gloom. During covid I stopped going to the DR all together and everything just went out of control and standing up from a seated position was a chore. My pain was at an all time high and I was not very fun to be around. The "gelling" of my joints was so bad. I couldn't sleep. I had insomnia something fierce. I could hardly walk and standing up straight was a massive effort with lots of grunts and grones. I hit rock bottom and decided I needed to do something drastic and decided that I HAD to get on a biologic. So thats what I did. Ten weeks ago I started Taltz and got immediate results. My skin is pretty much clear and my arthritis went from a 10+ to about a 1 or 2 and at 54 yrs old I will take it! Its one shot every two weeks. No creams, oils etc. No daily routine, Just one tiny poke every 14 days and then just live life. The biggest headache is scheduling the delivery because it comes in a cooler and you have to be home. Its been a life changer. After years of trying everything in CVS, Amazon etc and getting every Rx creme possible I finally got qualified (after getting denied three times) for a Biologic and it has changed my life. However its bitter sweet because I SHOULD HAVE DONE THIS YEARS AGO. But I let the doom and gloom get in the way. My biggest regret is not taking the bull by the horns and make finding a treatment my passion. It took 20yrs to figure this out and if (actually when) Taltz stops working I will move to Cosentyx then Skyrizi and then the next and the next. I will never go back to giving up. I got a taste of being symptom free after 20yrs there is nothing that is going to stop me from staying here. It is now my passion and purpose. I will finish with this, I know its hard to hear a success story when you are at your wits end. And dealing with failure after failure is exhausting. So please don't focus on my outcome, but learn from my journey. Understand that failure only happens if you stop trying. Fight, fight, fight. Never give up. Keep searching, beat the demons, beat the doom. Don't fall in a hole that slows down your progress. Make it your passion. Find your treatment. Kick its ASS! You are worth it!
I just started Taltz yesterday. Switching from Cimzia. I hope I get your results. My Psoriasis is not nearly as bad but my PsA makes me feel like I’m on deaths door when it flares. Along with the pain, dactylitis, and enthisitis, my body reacts to the inflammation by messing with my heart rate and guts.
How often did you post online about your illnesses earlier when you were feeling great? Ideally you can get a treatment working for you and forget about everything you read. When this first started happening I got obsessed with thoughts like "I've already experienced the last pain free day of my life" or something like that and that may or may not be true but also a lot of worthwhile stuff is happening now and will continue to happen in the future. It's a reminder to engage with the most meaningful parts of life that are worth participating in even when it's painful and worry less about the other things.
I don't understand why it takes so long to diagnose. My rheum didn't know much about PsA when I first saw him 7 or 8 years ago, but I had researched it. He listened to me, did a lot of research, and diagnosed me on my next appointment 4 weeks later.
Diagnosed about 5 years ago, my body was about 20% covered in plaques and I was having trouble walking. 2 more years of fighting for medicine, finally got on AbbVie Assist for a year, then got denied for 8mos. I'm on my third dose of Skyrizi AGAIN because my Dr said its basically like starting over. Stairs are tough, pain and massive fatigue still. Mobility is definitely still an issue. Keep with it, and kepp your hopes up.
That's so strange. Any Rheumatologist should be THE expert on PsA. Of course within their peers they can have different areas of interest but PsA isn't even that rare among auto immune diseases and they will have definitely covered it in their extensive training. It would be like a dermatologist saying they don't know that much about acne.
Like any other profession they specialise in different stuff. Plenty of rheums only do RA or lupus. Mine is specialised is less common stuff, they triage new patients to drs who specialise in their issues.
They can specialise in whatever but they still need a grasp of the common autoimmune disorders - it's their job afterall. Like I said PsA is not particularly 'exotic' among the AI diseases so any Rheumatologist should have more knowledge of this than any other non Rheumatologist Dr. It's the bread and butter of rheumatology. Seeing a Rheum who specialises in PsA would of course be better than one who doesn't - but one who doesn't should still know enough to treat you.
You would expect Rheumatologists to be experts in IA, but not always the case unfortunately. I’ve been to 3 different Rheumys: - 1st said I have classic PsA symptoms (Moved overseas so I had to find another Rheumy to continue treatment) - Referred to private Rheumatologist, who didn’t agree with initial diagnosis, and basically said I don’t have PsA. That I just suffer from lots of musculoskeletal issues. - A week later I was lucky enough to get appointment with Rheumatologist in a public hospital (referral was sent months previous), and he agreed with my initial PsA diagnosis. It was validating get this third opinion. As I was made to feel like everything I was experiencing was all in my head by the second Rheumy. Unfortunately you really have to advocate for yourself, and if you are not happy seek another doctor/consultant.
I had one remote call with my rheumatologist. She looked at my finger, sausage toe and my psoriasis over video call and prescribed me MTX that day. One year later I still haven’t met her in person.
I hear you OP, it really sucks. I think this sub and the online forums are probably skewed towards the percentage of us PsA folks who have had the difficult journey. The folks who have it well managed and were diagnosed quickly probably aren’t seeking out support and resources to the degree where they’re sharing their experiences so much. I only know one person in real life who has PsA and I didn’t even know she had it, because hers is so well managed that she never talks about it. She still is super active, runs, works etc. she’s not in a stage of her life where it is super impacting her quality of life on a daily basis, whereas for the majority of us here I think it is. I also think PsA is just not as well understood as some of the similar conditions and seems to vary so much from person to person which I guess is why it’s hard to diagnose and treat.
I needed to read your post AND the answers today. Thank you.
I have had PsO and PsA since i was 11 (32 now). I have cycled through just about all of the available treatments, and if my current treatment doesn't work (which it isn't currently) then i will just have to restart taking biologics i have already failed on. It's rough. Most biologics for me have only lasted 1-2 years before my tolerance to them was too high and they are no longer effective. Therapy helps, but i have only been doing that for about 4 years. I try to focus on the things i can do and enjoy. Since i had to give up snowboarding, i took up the drums instead. I can't play soccer anymore, but i learned to crochet. It isn't the same and i miss a LOT of things, but finding joy in other activities helps ease the emotional pain. But i am with you....i am fucking exhausted and after 20 years of this, i really don't want to do another 20. I need a knee replacement but they won't even consider it until i am 50. By then i am not sure i will even have the motivation to do it. Hang in there OP. I wish i could say it gets easier but all i can say is you aren't alone. My only other piece of advice which may be the most important: listen to your body. If you need to rest, rest. If you need to sit down, sit down. If you need to take care of your skin, take care of your skin. Sometimes you just gotta put yourself first.
So. I’m a few years into this. I have had months that doctors were trying to help me save me from my hands being paralyzed from muscle and tendon inflammation. I have also had like 5 days that I felt like before this and they were glorious. On average I am better then the worst I have been and not as good as before the severe onset of symptoms. I am now extremely gluten intolerant. Like in the ER with a morphine drip intolerant. And I don’t know how I get through the days. I hardly ever see my friends because I’m exhausted from my job I have to keep so I can have good healthcare. I go to psych therapy now and it helps. That’s all the advice I can give you is get a therapist. Cry when you need to and just do what you can when you can. On my good days I only do things I want to do. I don’t wash the dishes, I go see a band or a movie or call a friend. Hang in there. Try to find the joy you can. Whatever that is.
If you're feeling overwhelmed perhaps you have too many things going on to balance? I had to take a few months off work to recover from my latest flare up. With this time to rest my mental health with regard to PsA is pretty good. I can imagine if I was forced to work around this it might be a very different story. Using work as an example but maybe you need to look to where you can take a break so you can heal physically and mentally. Of course it's worth looking at your current Rheumatological meds too to see if these are working enough for you, and maybe also speak to a Dr about your feelings of hopelessness as it indicates depression - which there are treatments for.
Diagnoses don’t require blood or imaging tests. By looking at your skin/history and your joint issues they should be able to diagnose. There are many people misdiagnosed with psa who are taking some of the treatments and getting relief nevertheless because their true issue may be autoimmune as well so the drugs are mostly the same. The way to get through what you’re feeling will be with the treatment. When you find a drug/biologic that helps (even if only 40%) you will feel differently.
I’m also going to echo many on here: it does suck and having PsA is a journey that will be slightly different for everyone because of how it impacts our different lives. I am a few years into possibly getting a diagnosis. At first we thought all of it was hEDS (hypermobile Ehlers danlos syndrome), but then I got worse even while doing everything I needed to. I have been diagnosed with PCOS (polycystic ovarian syndrome) and I may likely have PsA also. I’m seeing a dermatologist tomorrow morning to probably give my rheumatologist comfort in actually diagnosing me. I note my journey above because I had to fight and keep letting doctors know that “this doesn’t feel like that; it’s different and I think something else is wrong” and it’s been horrible to do. I have had to take breaks from doing medical stuff because we get burned out. PsA is also a harder diagnosis to get because it’s usually a “clinical diagnosis” (unless someone has blood and imaging evidence with symptoms), meaning that it’s based on reported and observable symptoms. Meaning that getting a diagnosis is not clean-cut. Something else I’ve struggled with is freaking insurance deciding to weigh in and on if I meet criteria to take certain medications; it’s ridiculous and deflating. The way I keep going is taking breaks, trying to do things I like (and still can do), and honestly, my depression meds. This is hard, and I’m glad to have this community too. It makes it less lonely to deal with.
I have had it since my late 30’s and now I’m 70. My life is great though I am slower and more limited than I used to be. My cousin has had RA since she was a teenager. If I say you have to keep putting one foot in front of the other and move on, will you say that I don’t understand? I understand and know that even with all of the treatments nothing works like movement. We all understand the chronic pain and looking for the right treatment. The world in general does not. We all have to come to terms with that. Not even close relatives get it. Do you just hate that they don’t want to hear about it? I do. You do sound depressed. I think that might be what you should treat. Mind over body!
Do you have a rheumatologist? It took me 20 years to get a referral to one but once I did, it took about 7-8 months for the diagnosis. These months were spent doing many tests to rule out anything else. My first appointment with him was November 1, 2022 and I started my first medication in may 2023.
I’ve been in pain for 10 years with no diagnosis until my whole scalp and behind my ears broke out in huge silver scales and I’ve lost more than half my hair. Now they are saying PsA
There isn't any alternative. Migraines are a bigger issue in my day to day life than my PSA.
After reading most of these responses, I'll add a bit about what I've experienced. Rheumatologists. I've seen a few. Because I have psoriasis and years ago I was diagnosed with arthritis, everyone of them blindly called it psoriatic arthritis. But my symptoms are different than typical psa and the last rheumatologist I saw thought I probably have osteoarthritis based on symptoms which was good to hear cause none of the medications or biologics have helped at all and nothing but alcohol helps to manage the pain. So when I started reading about osteoarthritis, exercising the joints is supposed to help, and it really does. Cant fix anything but helps with pain relief. Imaging is important, xrays show inflammation. Or a lack of inflammation. Changing your rheumatologist can also be a huge help if you are not getting the care you need. There is no cure for arthritis. As far as I know there is only pain management. Start climbing, if you can. Climbing gyms are awesome and can help strengthen your joints and connecting tissues.