«
»

Top

Psoriatic arthritis diagnosis: Carenity members tell their story

21 Jan 2020 • 4 comments

Carenity members affected by psoriatic arthritis have graciously told us about their journey with their psoriatic arthritis diagnosis! Symptoms, emotions, tests and examinations, medical care, treatments... read their story with their diagnosis. 

Carenity survey of 269 patients across the Carenity platforms.

Psoriatic arthritis diagnosis: Carenity members tell their story

diagnostic-cancer
A majority of the patients waited more than a year to be diagnosed and consulted with 3 doctors before reaching their diagnosis.


Unfortunately for those suffering from psoriatic arthritis, the time period to arrive at a diagnosis after experiencing symptoms was an average of 5.8 years. 28% of patients who participated in this survey received a diagnosis in less than a year from the initial onset of symptoms; 72% of respondents received a diagnosis after more than a year.

During this period, respondents experienced varying symptoms with different severities. However, the majority of patients complained of the following symptoms:

Joint Pain| Swollen Joints| Fatigue | Limited Mobility | Deformity of Joints

Before the diagnosis: the impact of psoriatic arthritis

We asked our members about the impacts the symptoms caused by psoriatic arthritis had on their daily life before reaching a diagnosis, and this is what they had to say:

 

douleurs-cancer Chronic pain - 85%

loisirs-cancer Hobbies and activities - 77%

impact-cancer-vie-pro Professional life - 71%

fatigue-chronique Chronic fatigue- 71%

vie-intime-cancer Personal Life - 59%

vie-sociale-cancer Social life - 58%

vie-familiale-cancer Family life - 50%

           Other - 4%

The majority of respondents reported that psoriatic arthritis had the greatest impact on their chronic pain and leisure and hobby activities before the diagnosis. Only 8% of respondents reported that only one part of their daily life was impacted by the symptoms prior to reaching a diagnosis, while 57% of respondents reported that 5 or more parts of their daily life was impacted. Members, in general, felt that the symptoms impacted their family life the least.

Before diagnosis, only 48% of patients did their own research on the internet concerning their symptoms. A majority of those individuals reported using the internet to access the arthritis association website, Carenity or typing symptoms or concerns into Google and other search engines. Additionally, others mentioned they read medical journals and talked to family members and others.

A majority of respondents did not try any alternative therapies for their psoriatic arthritis, such as homoeopathy. Only 34% of the patients that participated in this survey said they did. However, those who did try alternative therapies reported use of homoeopathy, CBD oil, massage, relaxation classes, reflexology, Reiki, anti-inflammatory diet, turmeric, cod liver oil, apple cider vinegar, coconut oil, acupuncture, and gluten-free diet.

Being diagnosed with psoriatic arthritis: what you had to say

For many diseases, the road to diagnosis is peppered with a misdiagnosis/misdiagnoses. For psoriatic arthritis, 48% of the participating patients experienced a diagnosis error prior to their ultimate diagnosis.

According to the Carenity members that participated in this survey, they were misdiagnosed with osteoarthritis, rheumatoid arthritis, fibromyalgia, Morton's neuroma, and depression.

The misdiagnosis/misdiagnoses did result in causing considerable stress. One member said they "kept going back as no medication helped with the pain and stiffness until one doctor finally took me seriously and did blood tests," and another member stated "I went back and forth between doctors. Most said it was in my head, or it was fibromyalgia or osteoarthritis... it took years and years to get a proper diagnosis. "

The shock of the diagnosis  

How did patients react to their diagnosis?

diagnostic-cancer-reaction It was a relief - 43%

choc-annonce-cancerIt wasn’t a shock, I was expecting it - 34%

choc-annonce-cancer It was brutal - 17%

peur-cancer It was horrifying - 12%

soulagement-cancer I didn’t feel anything in particular - 10%

 

Finding out that you have psoriatic arthritis can be a frightening event, but 10% said they did not experience any particular sentiment, while 8% of respondents said they can’t remember how they felt at all.


The role of doctors and healthcare professionals

The role of the healthcare professional making the diagnosis is key. Sometimes patients do not feel sufficiently listened to or informed about their condition. The good news is that the majority of Carenity members felt that their doctor took time in discussing with them their psoriatic arthritis while also being calm and emphatic. The main problem members felt with their medical care was the feeling that the practitioner didn’t care and was not attentive.

Some comments from respondents described that the doctor expressed empathy and told them it was not life-threatening when delivering the diagnosis, while others described the delivery as being "direct".

Fortunately, overall, the majority of respondents had positive feedback regarding their medical care and doctor; however, some mentioned that there should be more psychological support as the news is "life-changing".

le médecin 

59%The doctor took the time to explain

54% -  The doctor was very calm

35% - The doctor was very emphatic 

8%The doctor offered psychological support

ressenti négatif

11%The doctor went too fast when explaining the diagnosis

11% The doctor seemed like he/she did not care

10%The doctor used too much scientific language

10% - The doctor was cold and distant

02% - Other

 

The patient's struggle when facing psoriatic arthritis...

We asked our members how they felt emotionally after receiving their diagnosis, whether they felt renewed with determination now that they had a name for their symptoms/condition, or whether they felt despair for their future medical journey. Many members felt several emotions at once and this is what they had to say:

64% of patients felt relieved by the diagnosis, but this was coupled with 33% feeling a great deal of anxiety. This anxiety was accompanied by shock and surprise for 12% of respondents. 

16% felt angry about their diagnosis; 15% reported feeling lost, confused and alone; 20% felt discouraged, and 22% of participating patients felt like no one understood what they were going through.

Fortunately, 39% of participating members felt determined to fight the disease, but only 13% had confidence for the future, with 11% feeling despair. 

How can the diagnosis of psoriatic arthritis be improved?

The above statistics on how patients felt following their diagnosis paints a "not so great" picture for those facing a diagnosis of psoriatic arthritis. We asked our members how they felt the process could be improved and many respondents said they would have appreciated more information about the seriousness of the disease and treatments, as well as more psychological support following the initial diagnosis.

More Information

The most resounding suggestion for improving psoriatic arthritis diagnosis experience is for doctors and doctors' offices to be compassionate, without sugarcoating the diagnosis and provide the patient with sufficient information on what they can expect going forward, and how to manage it.

Another important suggestion from members is to do your own research, be prepared, and have/ask questions.

This is what some members had to say:

"I regret not taking in everything that was said & not asking the questions I probably should have asked."

"I wish that the doctors were more understanding and could have told me what I would be going through then it wouldn't have been such a shock when every part of my body started to hurt. It would have been lovely just to have some reassurance that they would help me the best they could but was mostly just left to get on with it for several years before the hospital found a consultant to deal with people who have psoriatic arthritis."

"It wasn't explained very well and at the time I was also told I have fibromyalgia and given a few leaflets and told to go back to the doc to get more meds."

"I appreciate the help I am getting now. In the beginning, I was frustrated and scared. I suggest for anyone out there to get a good MD and get diagnosed as soon as possible."

"I'd have liked to have had my symptoms looked at more closely at the start. I felt that seeing as I'd had osteoarthritis for so many years it clouded the judgement of the doctors. I appreciated the doctor who sent me to see the rheumatologist, I felt I was getting somewhere then."

In brief

Members feel that their doctor should show empathy and dedicate time to answer any questions when delivering the diagnosis. Patients also encourage doing research on your own to be prepared to get the answers you need to better be prepared to understand and live with the condition. 

Members want doctors to be more detailed in their analysis to ensure patients are diagnosed correctly and quickly, without having to go through different doctors and misdiagnoses.

diagnostic-cancer

And what is your story?


Share your experiences and those of loved ones in the comments below to discuss how to improve the psoriatic arthritis diagnosis experience!

avatar Lee Ruiz

Author: Lee Ruiz, Community Manager USA

Lee is a Juris Doctor and Doctor of Physical Therapy. Now the Community Manager of Carenity US, he strongly believes that the platform has to be a haven and a tool for patients seeking information, advice or just a... >> Learn more

Comments

LindaRobinson
on 25/01/2020

I have been suffering with a flare up since a week before Christmas and my everyday life has been hard to bear, this is a chronic disease and will only get worse as I age, I am so sad.

Michael_B
on 28/01/2020

Hello @LindaRobinson,

Thank you for your comment and I'm sorry to hear you're having such a hard time. It sounds like your current treatments are not very effective in stopping the pain?

Take care,

Michael

Trudij
on 03/02/2020

My symptoms started when I was 32 years old in 2002 in my neck. I was eventually sent to a rheumatologist and RA was ruled out, as were other arthritis diseases. I was then sent for physio. Eventually in 2015 after a flare up of psoriasis in my scalp a visiting gp who was just about to retire, diagnosed me when I went to see her with severe joint pain in my elbows and big toes that had been dismissed by other nurses and gps as just muscular pain. I had never heard of PsA. 

My rheumatologist had never thought of PsA with me as I had no psoriasis on my body. I never told him I had it on my scalp as I didnt know about PsA. 

I have then had to fight to get treatment. It is now 2020. No rheumatologist in my local hospital deal with PsA or understand the symptoms or signs. (Uk) The only look at me and see I dont have RA symptoms.  I have fought for 5 years to get treatment. Finally I have moved to a different hospital and now I have a brilliant consultant who understands PsA and I am starting the protocol of treatment soon. 

Trudi 

JessieP
on 31/05/2020

My symptoms started when I was 21 and about to start a new job, my left big toe suddenly swelled and was so painful I really didn’t know how to cope, my GP at the time said it was gout and told me to adjust my diet. It was completely better in a week and I had no other symptoms for years, then in my late twenties I had problems with my eyes, photosensitivity, pain and redness, my contact lenses were blamed and I started wearing specs, my eyes took about a month to get right. Since then I’ve had aches in all my joints and fatigue but nothing enough to see a doctor, until in my late 40s I had extreme pain in my knees, hips and lower back, followed by very swollen and painful Achilles’ tendons, my GP blamed the menopause and refused to see that one heel was twice the size of the other.....8 years later I was at the GPs for another issue, I saw a locum who noticed my distorted knuckles, and had a good look at me, he referred me to Rheumatology as he thought it was rheumatoid arthritis. My lovely Rheumatologist saw the pits in my fingernails and instantly diagnosed PsA, I had all the usual tests, x rays etc., and started on Methotrexate tablets which helped, I have been on 20mg Methotrexate injections weekly and 5mg folic acid 6days a week for the last year, sort of stable now, but flaring at the moment, I fell a week ago and cracked my shin which seems to have set all my joints off at once. It’s been a long route to diagnosis, so when I did finally get it, it was a relief as I had started to think I was a hypochondriac and all the pain was psychosomatic. 

You will also like

What is Biologic Therapy? Focus on Inflammatory Diseases

Psoriatic arthritis

What is Biologic Therapy? Focus on Inflammatory Diseases

Read the article
Coronavirus (COVID-19) masks: Legislation, types, prices and more!

Coronavirus (COVID-19) masks: Legislation, types, prices and more!

Read the article
5 tips for successfully getting back into sport (even with a chronic illness)!

5 tips for successfully getting back into sport (even with a chronic illness)!

Read the article
Osteoarthritis diagnosis: Carenity members share their story

Osteoarthritis

Osteoarthritis diagnosis: Carenity members share their story

Read the article