The Emotional Impact of Living with Psoriatic Arthritis

Sascha Gallardo - May 26, 2023

Living with a chronic illness like psoriatic arthritis entails the constant presence of emotions such as frustration and loneliness. These emotions can be triggered by various factors, including the difficulties of symptom management, the limitations imposed on one’s routine activities, and the significant lifestyle changes the condition necessitates.

Other people’s lack of awareness of these life changes can lead to misconceptions, dismissive attitudes, and a failure to provide appropriate support or resources. This can further isolate patients, exacerbating their emotional struggles and hindering their overall well-being.

We can’t walk in a patient’s shoes but sharing examples of how psoriatic arthritis can affect patients’ mental health will give an idea of what they experience.

  1. Medication Woes

Psoriatic arthritis currently has no cure. The treatment options available are focused on controlling the symptoms, with some having the ability to prevent joint damage. Finding the one that works, however, can be a struggle. There are significantly fewer resources available for people living with PsA than RA, rheumatoid arthritis.

Aside from the level of efficacy, patients also need to consider the side effects. Some of the medications may cause minimal side effects but also ease the symptoms just a tiny bit. Some can do wonders symptom-wise but the side effects are terrible. Finding the right medication or the combination that hits the sweet spot can take months.

The waiting time will be frustrating. Trying out new medications one after the other, dealing with the side effects for a number of months while waiting for improvements, just to realize later on they’re not much of help. So now they need to start on another regimen.

And this only pertains to the process of experimenting with medications. Another significant concern is the accessibility of medications, which can often come with an exorbitant price tag, ranging from approximately $10,000 to $30,000 per year.

The specific situation varies from country to country. In the United Kingdom and Canada, for example, the government provides some level of assistance to individuals seeking medication. Although these programs are not without their own unique challenges.

In the United States, many patients rely on insurance coverage, which can be immensely helpful. However, complications can arise when insurance companies cease to cover certain medications, leaving families to bear a significant financial burden due to limited coverage. For patients without insurance, there is the option to apply for medical assistance programs offered by private institutions. It is important to note, though, that not everyone is eligible for such programs.

  1. Struggling with brain fog

Some patients dealing with psoriatic arthritis complain about brain fog, finding it hard to focus and think clearly. During a conversation, the right words may be hard to come by and it can take time to recall names and details. You can be explaining something and then stop mid-sentence, losing track of what you’re talking about. You may also have trouble following along with what others are saying.

Brain fog can also make it difficult to process information. The words on the page don’t seem to make sense and the storyline is difficult to follow. It can take longer to process and absorb the information, leading to slower progress.

And these examples only scratch the surface of the challenges posed by brain fog. A severe episode can lead to even more profound difficulties, such as the inability to recognize familiar faces or comprehend one’s surroundings. In extreme cases, individuals may find themselves disoriented and even getting lost along familiar routes they typically navigate effortlessly.

A lack of focus and mental clarity will cause disgruntlement. It hinders a person’s productivity. Even simple tasks like talking can feel tiring and require more effort. Also, dealing with the constant challenges of disorientation can be emotionally draining.

  1. Giving up what they love

PsA causes inflammation in the joints, resulting in pain, swelling, and stiffness. This can make it difficult for patients to do certain things, including things they love doing the most. Imagine a pianist not being able to play the piano, an athlete who can no longer run, or a surgeon who cannot perform surgery.

When a person is forced to give up something they are passionate about or that forms a core part of their identity, it can lead to a range of complex emotions, including sadness, anger, and grief. It may feel like a part of oneself is being lost, and the process of accepting and adjusting to this loss can be emotionally taxing.


Dealing with chronic illnesses like psoriatic arthritis is arduous and changes one’s life and those around them. It does not only affect the patient physically but emotionally as well.

Understanding the emotional impact of psoriatic arthritis fosters empathy, support, and improved relationships. This can lead to a more compassionate and supportive environment for individuals living with this disease.

And if you or someone you know is affected by PSA join our free Living with Psoriatic Arthritis Community so that you can have a safe and supportive online community.


Just one major correction in this article. The UK doesn’t just provide ‘some assistance’ with medications, it provides them all completely free of charge other than those meds which can be prescribed by a GP too. For those meds prescribed by a GP we pay £9.75 per month unless we are entitled to completely free medications. For all biologics etc which can only be prescribed by a rheumy they are completely free. For example I’m presently on Cosentyx which apparently costs the NHS around £1,800 to £2,000 per dose every 28 days. I get that completely free and don’t pay a penny towards it. That’s regardless of the fact I’m in full time work and receive no social assistence.

Furthermore unlike the USA we have a governing protocol on which meds to try for PsA which encompasses all that are available. That means the rheumy is duty bound to try meds in a logical sequence of which works best for the majority of patients. That protocol demands PsA is treated as aggressively as possible so as to ensure damage prevention is the goal.

That protocol in turn provides a stick with which to ensure more cogent treatment as if the rheumy goes off piste and fails to stick to the protocol to the patient’s deteriment then the complaint of consequent medical negligence has teeth. Pretty decent sharp teeth too. All of which ensures more positive treatment of PsA patients. We don’t therefore have meds swiped away from us that are working simply because the insurer says so, or simply because we’ve stopped working etc etc, or other circumstances have changed.

Yes the NHS does have its challenges but irrespective of those challenges the rules under which they operate as detailed above hold true. We do have to be assertive patients and call out crap nonsense from both GP’s and consultants but we’re not left without meds like so many in USA. We have the safety net of a universal health service. Which in the world of a chronic disease like PsA provides an undeniable level of comfort to patients plus cogent treatments.

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They $10K to $30K a year for drugs is a joke also. If you have no insurance it is more like $10K a month. Since I just retired I am playing the game of being on my wife’s insurance so I can use the co-pay cards. I spent all day on the phone with Abbvie last week because CVS screwed up my script. If I lose the co=pay assistance I’ll have to stop taking the meds. I don’t have the $8K plus a year that I would have to pay on Medicare and they do not work $8k worth! I would have to get by with increasing my pain meds. THey are much cheaper.

I found Abbie Care to be very reasonable with their compassion program. Especially with Rinvoq as they want it out there as much as possible to hopefully hit a “home run: with it on the market. They covered me completely either not charging me or paying my co-pay amount for me…at no time did I pay anything for Humira or Rinvoq.

But you’re in Canada.

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I got my diagnosis of PA axial a year ago from my rheumatologist. Actually, been living with it for many years without a definitive diagnosis. I am dealing with enthesitis in my lower back, achilles and shoulder. I appreciate what you have written about the depression, frustration and brain fog. I try to deal with this with limited stretching, exercise and mindfulness. I am on to my next biologic Cosentyx: Humira and Tremfya did not work. I have found the US manufacturers to be very helpful with the copays because I meet their financial criteria. I didn’t have to pay for the Humira or Tremfya.

Rereading this. Vix? Is the axial kind the “I have it all over” kind?!

If I had it in one finger, it would still suck. But, I have it all over.

Since I retired a few months back I have been looking over my future medical cost. I moved to my wife’s insurance so I can still sue the co-pay cards, but I end up battling them about every 2 months. At $10,000 a month, if they actually worked and I felt even 50% better, I would pursue other avenues to pay for them one day. But my reality is that none of done much so far (9 years). I have done Otezlla, Cosyntex, Enbrel, Humria(every week), taltz, termfya, and now Rinvoq. Even the Rinvoq pill is $200 each, one a day.

I was talking to my wife recently about the cost and told her I am sort of glad they don’t do much so I won’t be in such bad shape in a few years when I can’t afford them… If they actually worked, I would be out robbing banks or whatever it took to get the money for them. I can’t, and not sure anyone can pay until I get to the catastrophic part of Medicare Part D. I don’t have $8000 to pay until that point. If they worked $8,000 worth, I could probably come up with it.

My rheumy still has not ruled out an infusion each month. That may be covered??

Hey @Vic can you describe how your enthesitis manifests itself? It sounds like our “issues” are similar.

Hello, Amos

I’m appreciative that you reached out to me. I was hoping to hear from others about PA axial and enthesitis. I don’t have bone breakdown or psoriasis, but I get these muscular inflammations.

I have enthesitis of my lower back, hips and right plantar fascia and right shoulder. I am currently going through a major flare-up of my lower back. PT taught me how to be back healthy, but I still get these flare-ups. It is burning, stiffness and back spasms. Rest, alternating ice/heat NSAIDS help. Stretching helps. However, I never get complete resolution of the lower back and plantar fasciitis. That’s why I’m trying biologics. Humira and Tremfya did not work for me. I am hoping Cosentyx will.

I hope this helps. Would you please let me know about your experiences?

Rinvoq is expensive like most biologics. I suspect that any of those here that are wearing a mask are planning as you are regarding banks…why not go strait to the pharmacy? :slight_smile: I guess others from the US would have to give their thoughts. My provincial deductible and the cost of the Humira, Rinvoq and now Simponi has been covered by the companies that produce it. I don’t have anything bad to say about “big pharma”. They have been very helpful, immediately available for questions etc. I don’t have any sort of private coverage.

My major symptoms are in the spine. Axial is the spine in medical terms. I get these muscular inflammations that don’t completely go away. Mostly lower back and plantar fascia. The US patient assistance programs were very helpful with getting me these biologics. It would be extra helpful if they worked for me. My rheumatologist says it is trial and error to find the correct one. I guess that’s why they call it practicing medicine.

Ii’s been difficult for me to find a rheumy that will spend some time discussing enthesitis. I have pain that bounces around but only a few joints are visibly inflamed. What is going on below the surface is very real and painful enough to make one hobble around. I wish there was more education on entheistis and that it wasn’t diagnose by red, swollen joints.

There is the Leeds Index scoring method for enthesitis. Plus it’s clear tendon and ligament issues are very classic PsA. Most of my PsA issues are actually tendon related. I can literallly feel the pain the length of the tendon more painful where the tendon begins and ends.

The joint issue counting is all to do with trying to ensure the meds get given to us before joint damage occurs. So obviously the more swollen joint issues you have the more likely the joints will get damaged, ergo they count the joints.

Cosentyx is my 3rd biologic I’ve been on now over four and a half years. It’s been really good for me, exceptionally so. Be aware it’s a real slow burner. It didn’t start to work for me until the end of month eight. So patience is required. Lots of patience. Tremfya takes 24 months to get to full potency so is even slower than Cosentyx.

Most people on Cosentyx will find it starts to work for them anywhere from month 6 after starting right up to month 12. So please do keep that in mind when you start this and please ensure you start on 300mg not 150mg. Best of luck.

While waiting for Humira and then Rinvoq to get going, I didn’t have any significant psoriasis issues. Actually psoriasis has been very tame since 2012 and the odd spot was quickly dealt with using Protopic (Tacrolimus) topical prescription…(also given orally as anti rejection med for those who have transplants) But I was told yesterday to stop using Protopic by the pharmacist that distributes Simponi. Since it is also immunosuppressant I shouldn’t use it with prednisone and Simponi. Though it is topical, some gets into the blood stream and it could lead to serious infection risks. While struggling with joint pain all over, my inverse psoriasis has blown up and I’m miserable unless I increase prednisone…which I weaned down to 2.5 mg/day. Prednisone seems like the least of the two evils.

Thanks for the Cosentyx clarification! My rheumatologist took me off Tremfya after 3 months because my back pain was worse. I was on Humira for 8 months with no success. I will be starting the Cosentyx later this month at 150mg per shot every week for 5 weeks and then once per month thereafter. I need to get blood work regularly. On your recommendation I am going to give Cosentyx some time to work.
Are you taking it to control enthesitis?

With PsA you MUST start Cosentyx at 300mg. If your rheumatologist consulted all the available research on Cosentyx increasingly available it says if you have failed other biologics before starting Cosentyx you then start at 300mg. Starting at 150mg won’t help you sufficiently sadly. So why set out to have it fail you? So that would 300mg per week for the first 5 weeks and 300mg every 28 days thereafter, It’s strictly an every 28 day med not monthly, which means excluding the loading dose scenario you have 13 doses of Cosentyx per year.

Obviously and sadly your insurers might be involved in the dosing strategy too. Incidentally Cosentyx is now available in an infusion format which apparently your side of Atlantic insurers appear happier to fund than the right dosage of self injecting pens.

Presently there is lots of research going on with Cosentyx and just psoriasis only sufferers. It appears that a dose of 450mg is proving excellent for that. I know no one who is on Cosentyx where it works for their PsA at a mere 150mg. And I’m in several Cosentyx groups too.

Most of my PsA symptoms are enthesitis related and yes it can certainly control that well.

Tremfya hasn’t a hope of working for any patient within just three months sadly. Not when it doesn’t reach full efficacy for 24 months. Cosentyx won’t work in three months either, it’s first review date for the smallest of imprrovements is 16 weeks anyhow. Blood testing initially is merely once a month and shifts to once every three months later. It’s no more heavy duty in regularity than any other biologic.

For inverse psoriasis a diaper cream can certainly make things more comfortable too. It sorts out mine very well.

Thanks Poo_therapy! I’ll ask my rheumatologist about the Cosentyx dosing. Is it possible to send me links to the current research?
I also learned something recently. I have had the common cold for the last few days, and I noticed my enthesitis is worse. It seems the immune response is increased when your body is fighting a virus: More cytokines and histamines. So, more pain with the cold.

No but Novartis the manufacturer of Cosentyx should be able to update your rheumy on its research globally.

It’s funding protocol in the UK (where I am) that Cosentyx tends to be given after Humira and Enbrel biosimilars have failed the patient and that the starting dose is 300mg. We tend (it’s not completely rigid either) to be treated on such a protocol basis. The edict to start at 300mg was because 150mg wasn’t effective enough.

When we are sick with something else, either the immune system gets really busy and leaves PsA alone so PsA symptoms recede or you hit a more over reaction like you are presently. That’s more likely when you’re not on PsA meds that are actually working for you, which is more similar to your present situation. Again though, insane immune systems like ours never behave at all rationally.

Regardless of where I am med wise, I do so much better in freezing dry cold than I ever do in warm humid weather.