Psoriatic arthritis is different for everyone. Some people struggle more with psoriasis symptoms, while others have frequent arthritis pain. In either case, it can take years to reach a correct diagnosis.
Everyday Health: How were you diagnosed with psoriatic arthritis? How long did you experience symptoms before you were diagnosed?
Tobey Craft: I began having arthritic symptoms and eventually needed knee replacement. I was sent to a rheumatologist nine years ago to find out exactly what was going on with my arthritis. The rheumatologist then noticed that I had some plaque psoriasis on my leg.
Carly Dalkowski: I was given my psoriatic arthritis diagnosis at the age of 18 due to joint pain and swelling I experienced, as well as mild skin irritations - scabs forming on my scalp, scaly patches on my legs, etc. I have been suffering with my joints since the age of 10. Initially the aches were attributed to growing pains, but then my neck became so painful I could no longer turn it properly.
Terri Lee Eggeman: I was diagnosed with psoriasis in March of 2008. When I went to talk to my dermatologist about a psoriasis treatment plan, she asked if I had any joint pain. I realized that I had experienced a lower back ache for at least a year, along with occasional swelling and pain in my knees. My dermatologist started me on some topical medications to control the psoriasis plaques I had on my legs and arm. At that point I had about 20 percent psoriasis coverage on my body. She told me in the future there was a good chance that I would have to go on a systemic medication to control my disease, and that I needed to make an appointment with a rheumatologist to evaluate the joint pain. She gave me a rheumatologist’s phone number and told me to call with any questions I could think of, which I really appreciated. I see my dermatologist yearly now, but my skin is less of a problem than my arthritis.
J. Sue Gagliardi: I wasn't diagnosed with psoriatic arthritis for years, although psoriasis and psoriatic arthritis really started with the birth of my first child in 1959. The psoriasis began in my scalp, moved to my elbows, lower back, and ultimately to my hands and toenails.
The arthritis began with the psoriasis outbreaks, but I started on aspirin therapy, and the arthritis pain left for a while. Then I had a second arthritis outbreak that lasted a year. During a more serious outbreak of arthritis in 1989, my family doctor sent me to a rheumatologist. At first, the rheumatologist wrote the diagnosis as rheumatoid arthritis, but that was a wrong diagnosis; I had no rheumatoid factor in my blood.
My family doctor prescribed prednisone for me according to the rheumatologist's recommendation. I took it for three years and then weaned off of it - but I still had arthritis symptoms. It took a few months, but the arthritis faded away. That psoriatic arthritis outbreak lasted from 1989 to 1993, but since then I have had no arthritis symptoms or outbreaks. The psoriasis, however, has stayed ever since it began in 1959. Lately, I've found a few small psoriasis patches on my legs. I do have some swollen nodal joints in my right hand and a couple of toes, but they aren't painful.
Which Experts Help You Manage Psoriasis and Psoriatic Arthritis?
Everyday Health: Which types of doctors and specialists do you see in order to manage your psoriasis and psoriatic arthritis? How do these medical professionals help you care for your condition?
Terri Lee Eggeman: I spend a lot of time with my rheumatologist - every eight weeks I have an appointment, in fact. I’ve had to work with my doctor to help find the right treatment for me and deal with side effects of the medications. After my rheumatologist diagnosed me with psoriatic arthritis in March of 2008, I tried a few different treatments to help with lower back pain. One caused me to feel nauseated, so I had to take medication for that as well. Thankfully, the nausea went away after 8 to 10 weeks, and by December of 2008, my pain was decreased. I was doing a lot of traveling at that point, since my husband was working in Kuwait and I was meeting him there to travel throughout the Middle East, so I opted to start a medication that is injected every two weeks. This way I could time the injections around when I was home. After a few months I could not believe how much better I felt. I felt I was almost back to life without psoriatic arthritis.
Carly Dalkowski: Initially I was referred to a chiropractor. I was around 13 years old, and I attended sessions on and off for two to three years but stopped going because I felt it wasn’t helping my joint pain. After another trip to the doctor, I was diagnosed with hypermobility syndrome and referred to a physiotherapist instead, which is akin to a physical therapist in the United States. I went for a few sessions. After my knees started giving out walking down stairs, I was referred to a rheumatologist, who sent me for various diagnostic tests. I was initially told to take daily ibuprofen pills to manage pain, but then switched to stronger medications, which did not work well either. I now see the rheumatologist for a check-up once a year.
J. Sue Gagliardi: Luckily, I haven’t had joint pain since my last bout with arthritis in 1993, so I don’t see a specialist for that. In fact, I currently don’t see any doctors for my psoriasis or psoriatic arthritis. About 10 years ago, I went to a dermatologist and he gave me two prescriptions: a vitamin D derivative and another ointment. It did less for the psoriasis than the topical steroid ointment I’d been using previously - and it cost three times as much. Now for my psoriasis, I simply use an alpha/beta hydroxy hand lotion and try to stay calm and positive with prayer and meditation daily. I wash my hair with over-the-counter dandruff shampoos twice a week, as shampooing seems the best to soothe my psoriasis. When my scalp scales, I use an over-the-counter scalp itch medication.
Tobey Craft: I see my rheumatologist and dermatologist all the time. The first year after my diagnosis, I was given an infusion to help control the psoriatic arthritis. I then began having reactions to this infusion, and after another six months or so, I was taken off this medication and placed on adalimumab. I was on adalimumab for over a year, and then it seemed like it was not helping anymore. In the meantime, I was seeing a dermatologist for the psoriasis plaques on my leg. I was given multiple creams to stop the psoriasis, but it kept spreading on my shin. My current dermatologist has begun giving me steroids shots into these plaques. Most of the time the shots work. Unfortunately, the psoriasis has spread to all over my body, including my belly button, spine, across the shoulders, both arms and legs, and face. It is not fun.
How Do You Deal With Psoriatic Arthritis Flare-Ups?
Everyday Health: How often do you experience psoriatic arthritis flare-ups? Is it easy for you to recognize when a flare-up begins? What are your first steps during a flare-up?
J. Sue Gagliardi: I have not had joint pain since my last flare-up ended in 1993. However, I do notice when I'm tense, angry, or bothered in any way over relationships or situations, the psoriasis flares. I use alternative therapies to ease flares: My first step is to meditate. I recently started using a blue light therapy light bulb to help ease psoriasis. I also watch my diet, and I've tried a seven-day detox plan in which I cut out meat, dairy, wheat, chocolate, alcohol, salt, and caffeine.
Carly Dalkowski: The aches and pains of psoriatic arthritis are more of an ongoing irritation, occasionally getting worse if I'm particularly run down or have overdone it with exercise. I use NSAIDs and heat patches to help.
Terri Lee Eggeman: After I started medication, I had very infrequent flares. I can usually tell I’m flaring by an increase in joint pain, especially in my lower back and hips. I may or may not have swelling. There is also a general feeling of malaise. I feel a deep-down throbbing ache in my joints, and a level of exhaustion that no amount of sleep seems to help. When I experience a flare, I usually cut back on my activity level and sleep more. It’s hard for me to say no to people, but I’ve gotten better at it since my psoriatic arthritis diagnosis. Sometimes I just have to pull back and realize my primary job is to take care of my health. I sometimes have to start a short-dose prednisone during a flare as well. My last big flare left me with dry, irritated eyes, which I now also take medication for.
What Lifestyle Habits Help You Prevent Psoriatic Arthritis Joint Pain?
Everyday Health: What lifestyle habits help you prevent psoriatic arthritis flare-ups and joint pain?
Carly Dalkowski: Regular exercise is important. I had been excused from school gym classes from the age of 13 by my doctor due to the stress it put on my joints. Ever since, I completely avoided exercise, assuming it would make my condition worse. However, after my weight slowly crept up, I decided to join a gym. After two years, I lost 5 stone (about 70 pounds) in weight, which took a massive amount of pressure off my knees and has really helped my flexibility. I also try to eat healthy, and I take vitamin C, zinc, and iron supplements.
Terri Lee Eggeman: I try to prevent flares by getting adequate sleep - I feel worse and have more pain if I short myself on sleep. I try to eat a normal, balanced diet that’s low in processed sugars since I’ve noticed my joints are worse when I’m eating poorly. I also do low-impact exercise on a regular basis.
Tobey Craft: More than any lifestyle habits, my attitude has helped. At first I was ashamed of my psoriasis and kept my arms and legs covered. Now I realize these plaques do not say who I am inside, and I no longer cover them up.
J. Sue Gagliardi: Spirituality helps me ease stress and live a healthier life. I follow a daily spiritual practice and look at spiritual readings. Although I struggle with motivation sometimes, I know exercising more and walks will greatly help me as well.
What Helps You Relieve Joint Pain?
Everyday Health: What do you do to relieve joint pain? What’s most effective?
Tobey Craft: Exercise and and an over-the-counter painkiller, like acetaminophen, help me the most.
Terri Lee Eggeman: Heat seems to help the most when my joints are painful. I have a moist heating pad which I use on a regular basis, and I take a lot of warm baths and showers. I also regularly see a massage therapist who has trained in arthritis massage. I always feel better after a massage with gentle stretching and heat. I do take an arthritis medication daily for joint pain and fish oil supplements to help relieve inflammation.
Carly Dalkowski: I find the most effective pain relief is to take a prescription pain reliever and use heat directly on the affected area. Regular exercise and stretching also helps to avoid psoriatic arthritis flares. I try not to drink too much alcohol as I have found after a night of drinking that my joints can be noticeably more painful.
J. Sue Gagliardi: Usually I don’t experience joint pain except in my lower back. I take aspirin occasionally for back pain. Sometimes I take ibuprofen. I don’t take pain relievers often though; I’m on too much other medication for other health conditions.
How Do You Cope With Morning Stiffness?
Everyday Health: Do you experience morning stiffness? Explain how often and how long it lasts. What do you do to cope with morning stiffness?
Tobey Craft: I have some morning stiffness, and it lasts for about 10 minutes before I am up and moving. I’ve found that the more I move, the less my body is affected. Should I sit down for any prolonged period of time (such as while watching television), I find it is hard to start walking, but after the first four to five steps, the stiffness begins to fade. So my advice is to keep moving.
Terri Lee Eggeman: I do experience morning stiffness; some days worse than others. When I was first diagnosed, this stiffness could last two hours or more. Currently I am stiff 20 to 40 minutes in the morning. To cope, I get out of bed and go right into a warm shower, and I do a little stretching.
Carly Dalkowski: Yes, I have morning stiffness, which tends to last around an hour. After that it wanes, but as the day progresses, joint stiffness slowly creeps back on. I am unable to stay in bed for long amounts of time and prefer to sleep on the sofa or in an armchair as it supports my neck better. I have a buckwheat pillow (a type of Japanese pillow used to ease muscle stiffness) which I can’t live without, as it has really helped the pain in my neck. I also use large foam pillows to pad my knees and elbows apart and prevent them from banging together in the night and aching in the morning.
How Does Stress Affect Your Psoriatic Arthritis?
Everyday Health: How does stress affect your psoriatic arthritis? How do you manage stress?
J. Sue Gagliardi: Stress affects my psoriatic arthritis terribly. I take medication for thepsoriatic arthritis symptoms I get as a result of stress, and also, meditation and deep breathing help.
Carly Dalkowski: I work for a bank, and stress comes with the job. Stress does make my psoriatic arthritis worse, more noticeably so in my neck and shoulders. I try to counteract it by taking some “me time” and exercising, or taking the time to cook a tasty, healthy homemade meal. My fiancé also gives me shoulder massages if I've had a particularly rough week, as the stress can cause my shoulder blades to swell. I have reactive lymph nodes, meaning that they are usually swollen, and any extra stress causes them to swell larger, causing more pain in my neck.
Tobey Craft: I am retired, so fortunately I don’t have much stress anymore. But I assume that a higher level of stress would make my psoriatic arthritis symptoms worse.
How Does Exercise Help You Manage Psoriatic Arthritis?
Everyday Health: How often do you exercise, and what kinds of exercise do you do? How does exercise help you manage psoriatic arthritis?
Tobey Craft: I exercise at least five minutes a day strengthening my core. I also try to walk at least half a mile once a week - but I need to get outside and walk at least half a mile a day instead of once a week. I have several outdoor allergies that are making that goal more difficult at the moment.
J. Sue Gagliardi: I really hate to exercise and am full of good intentions, but the most I do is walk my dog for 10 minutes in the morning and then again in the evening.
Carly Dalkowski: When I was first told by my doctor that he couldn't do anything other than give me drugs, I took the view that I would ignore my condition and fight through it. However, I've now learned to recognize the signs that my body is struggling, and instead of fighting through the psoriatic arthritis symptoms and making the pain worse, I lower the intensity of physical activities. For example, I started running, but the pain in my knees got to be too much, and I now do lower impact exercises. If I don't exercise for a few days my joints start to feel stiffer, so I try to do something every day, even if it's just a few stretches in the morning before I get out of bed.
What Are the Emotional Challenges of Psoriatic Arthritis?
Everyday Health: What are the emotional challenges of living with psoriasis and psoriatic arthritis, and how do you cope with them?
Terri Lee Eggeman: It is an emotional challenge to live with a chronic disease like psoriatic arthritis. There is a constant low level of pain and fatigue. Since there is not an outward sign of disease, people don’t understand, or may forget that you have a chronic illness. I find that very frustrating.
I have learned to speak up if I am having a bad day. At work, I let my coworkers know if I haven’t slept well, or if I am in pain and may not be able to do as much that day. I have received wonderful support from the National Psoriasis Foundation (NPF). I have been aPsoriasis One to One mentor, an NPF program for newly diagnosed patients, for almost two years now. I enjoy talking to others living with this challenging, ever-changing disease. I can always count on my fellow mentors to listen or help with a problem. I also belong to several support groups on Facebook - groups for psoriatic arthritis support and groups for people taking biologic medications. I absolutely love talking to people from around the world and hearing how they deal with daily life. I’m friends with a nurse in England, a researcher in Bulgaria, and a veterinarian in Algeria. We all face the same challenges.
Carly Dalkowski: I’m 22 years old, and I find it hard when my body won't let me do things that normal people my age should be able to do (like walking down stairs in high heels without my knees giving out, or being able to go on roller coasters). My fiancé doesn’t have any health problems, and I worry how our relationship may change over the next few years if my condition starts to get worse. However, the challenges I’ve faced motivate me more, and I feel like I have achieved more than most other people my age. I know that if I want a great job, nice house, and decent savings in the bank, I need to work hard while I'm young in case I can't when I'm older.
I do have the occasional moment where my body gives up on me. My fiancé and I often go to festivals, and one time after being on my feet all day, I was unable to walk any longer. I stayed in the tent on my own while my fiancé and friends continued enjoying the festival without me. I had a quiet cry to myself, but then realized that there are other people who are a lot worse off than me and wouldn't even have been able to make it to the festival.
J. Sue Gagliardi: I don’t find that living with psoriasis and psoriatic arthritis is stressful. I don’t like it, but it doesn’t distress me or challenge me emotionally. What does bother me is that I can’t wear my hair up or cut it short because the redness of psoriasis shows on my ears and neck. Also, I don’t like my red hands. Once someone thought that I had been burned.
Tobey Craft: The psoriasis plaques are so noticeable that I can no longer hide them, so I just let them show. Sometimes it becomes embarrassing. However, when a child walks up to me and asks what’s on my skin, I explain what psoriasis is.
What's Your Advice on Living With Psoriatic Arthritis?
Everyday Health: What one thing has helped you manage psoriatic arthritis the most? What advice would you give to a person newly diagnosed with psoriatic arthritis?
Terri Lee Eggeman: I would say that medication has made the most dramatic, positive change in my day-to-day life. The emotional support I have received from others helps me to cope. My advice to a newly diagnosed patient would be to find a doctor that you can partner with, learn as much as you can about this condition, and realize that not every treatment works for every person. Psoriatic arthritis is not a static disease; you will have to make changes over the course of your life. But you can live well with psoriatic arthritis.
Carly Dalkowski: The one thing that helped the most - and also changed my whole life - was starting to exercise again after my psoriatic arthritis diagnosis. I have a lot of determination not to let the condition beat me. I’ve seen my father struggle with his joints, and the pressure it puts on my mother to look after him. I am getting married in a couple of months and do not want my partner to have to look after me. In a way, psoriatic arthritis motivates me, as I feel I need to achieve more while I'm young (my grandmother was crippled with rheumatoid arthritis in her early twenties).
I'd advise anyone newly diagnosed with psoriatic arthritis to keep as active as they can and to keep doing the things they love, but to make small compromises. For example, if you go to a music gig or rugby match, get seated tickets instead of standing. It's also okay to feel sorry for yourself every once in a while as long as you remember at the end of the day that you could be a lot worse off.
I find it helps to tell the people around you about your condition and if you are struggling - at first I was embarrassed by psoriatic arthritis and only asked for help when I really had to. If I make people more aware, I can avoid unnecessary pain for myself and also prevent others from feeling guilty when they realize how much pain I am in. I've found that people would rather know if you’re dealing with psoriatic arthritis pain or fatigue upfront.
J. Sue Gagliardi: I would tell a newly diagnosed person with psoriatic arthritis to find the joy in life and within oneself, to keep positive thoughts as much as possible, to find a meditation system that works for them, to keep moving (even if slowly), to see a dietitian who specializes in skin diseases, and to develop the spiritual side of oneself. All of these helped me and are still helping.
Tobey Craft: The first thing I would advise a newly diagnosed individual would be to follow the rheumatologist's directions. Take your medication or infusions as needed. Make sure you don’t have an allergic reaction to any psoriasis creams you’re prescribed. If you find your plaques getting slippery or bigger after putting medication on them, advise your doctor immediately.
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