• Chronic Life: Living with: psoriatic arthritis #SpoonieProblems

    May 02nd • Posted in Chronic life, Lifestyle

    A series about those living with chronic illness and pain, written in a way anyone can understand. 
    Living with psoriaitic arthritis. How to cope.

    For a long time I’ve wanted to create a lifestyle blog. Not to just share reviews but also to share my experience with chronic illness. I also want this series to be a place where others can share their experiences too. I want people to know they are not alone and I want to provide people with resources that may just make their life a little bit easier.  

    Did you know that May is arthritis awareness month? 

    I thought this would be the perfect time to share my experience with arthritis. May is Arthritis awareness month in the US and it is an awareness month for arthritis in children here in Ireland. Chronic illness can make you feel incredibly isolated and alone so if this post helps at least one person then I’ll have achieved something.

    So what is psoriatic arthritis?

    People seem to have some knowledge of rheumatoid arthritis but when they hear the term psoriatic arthritis I’m usually met with a blank stare. I don’t find this offensive. You’re fortunate if you’ve never heard of it. Let’s start with the medical definition from the Mayo Clinic:

    “Psoriatic arthritis is a form of arthritis that affects some people who have psoriasis — a condition that features red patches of skin topped with silvery scales. Most people develop psoriasis first and are later diagnosed with psoriatic arthritis, but the joint problems can sometimes begin before skin lesions appear.

    Joint pain, stiffness and swelling are the main symptoms of psoriatic arthritis. They can affect any part of your body, including your fingertips and spine, and can range from relatively mild to severe. In both psoriasis and psoriatic arthritis, disease flares may alternate with periods of remission.

    No cure for psoriatic arthritis exists, so the focus is on controlling symptoms and preventing damage to your joints. Without treatment, psoriatic arthritis may be disabling.”

    Additionally (because this description has not mentioned it) I want to add that psoriatic arthritis is an auto-immune condition where the body’s immune system is over active and turns on itself. In my case it attacks my joints but it can also attack the lining of your organs. 
    It differs from osteoarthritis ( I also have this, but that’s for another post) which results from ‘wear and tear.’
    My case is a little unusual because I don’t have the skin condition but my mother and brother do. So how did it all happen?
     This disease came on all of a sudden. One morning I woke up feeling like I had been run over by a bus and that was the start of a long, never ending road. I say long because the time from the onset of my symptoms to definitive diagnosis was about 2 years. This was because my blood tests were clear and my swelling was very slight which can be common in the early stages. My rheumatologist was very hesitant to label me without visual proof. This was because of the level of drugs required to treat the condition. 

    What are the symptoms and how does it affect my life?

    I have pain in almost every joint. From the first joint in my neck to the bottom of my toes. I get a lot of swelling in my fingers and toes. This makes simple tasks like writing or tying laces very hard sometimes. I get an awful lot of hip pain due to the psoriatic arthritis but also because I have osteoarthritis in my left hip. This can make bending over or even walking very difficult. This condition also affects my feet, especially my Achilles tendon which, again, makes walking difficult. Along with all that comes chronic fatigue which means some days I can barely get out of bed. 
    It affects the tendons in my hands which causes me to randomly drop things. I can no longer lift anything heavy and usually have to use two hands to hold the kettle and even a tea cup sometimes. 
    Psoriatic arthritis is usually worse in the morning and symptoms can wax and wane. Which means some days I feel almost fine and other days I have incredible pain and swelling. These periods are called flares and can last anywhere from days to weeks or even months.

    How is psoriatic arthritis diagnosed?

    The first port of call will usually be a doctor. If you present with symptoms like I’ve explained he or she will probably give you a general check-up (blood pressure, temp, etc.) They will then ask you some questions to determine what your pain feels like and how long you have been feeling this way. After that they will more than likely have a look at your joints and feel for any swelling or stiffness. 
    Blood tests also play a role in diagnosis. My doctor checked for what’s called inflammatory markers. These are levels of certain proteins (CRP) and cell activity (ESR)  in your blood that can be raised when your body is experiencing inflammation. 
    I feel it is important to mention here that a clear blood test does not mean you don’t have psoriatic arthritis or some other form of arthritis. My bloods were clear for about a year and a half which delayed diagnosis. My symptoms persisted which was why my doctor insisted I see a rheumatologist. 

    How is psoriatic arthritis treated? 

    There are numerous medications available so I will tell you what I am personally on at the minute.
    For pain: 
    Celebrex, a pain killer for my hips
    Paracetemol, for general low level pain.
    Solpadol, a codeine based pain killer only for short term use when paracetamol doesn’t work.
    Steroids, for when none of the above work.
    To treat the disease: 
    Metoject – a weekly intjectable form of methotrexate which is a chemotherapy drug. This suppresses the immune system and helps to stop it attacking my joints. 
    Stelera – this is a biologic drug which I inject every 12 weeks. This is works with the metoject to suppress my immune system.
    The downside to these drugs is that they can leave you open to picking up more colds and flu’s. So far I’ve been very lucky. I got one cold at Christmas and that was it. 

    What should you do if you think you have psoriatic arthritis? 

    The main thing is not to panic and for the love of God DON’T google. That was the worst mistake I made. I frightened the life out of myself before I even saw anyone! The first thing you should do is make an appointment with your doctor. Don’t put it off. This condition will not go away by itself and needs to be treated within the first 6 months to prevent permanent damage. 
    Be honest with your doctor. Don’t play down your level of pain or how the pain is affecting your life. It’s important to be 100% honest so he or she can start you on the right treatment path. 

    What support systems are in place?

    If you are diagnosed you will see a rheumatologist and a rheumatology nurse regularly but sometimes we need support between them. Here are some sites I can recommend:
    Arthritis Ireland (or just google arthritis along with your country)
    Living with Psoriatic Arthritis – a great forum for when you need advice or support. 
    The National Psoriasis Foundation . Great for information too.
    And finally, myself. If you need someone to talk to please contact me here or on any of my social media sites. I’m not a doctor but I’ve been through the mill and would be happy to chat to anyone who needs support. I know how isolating chronic illness can be and sometimes all you need is a friendly ear. 
    Do you have a chronic illness that you’d like to talk or raise awareness about? If so I’d love for you to become a part of this Chronic Life series. If you’re interested please contact me.
    Did you find this post helpful? If so I’d really appreciate it if you shared it or even pinned the image below on Pinterest (hover to pin.)

    Living with psoriatic arthritis

    Thank you for reading!

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    Chronic Life: Living with: psoriatic arthritis #SpoonieProblems

    • ROBERT LEE says:

      I have heard f both conditions, psoriasis and psoriatic arthritis. Yes, it can be managed but that's almost one could do. Even if science today has no cure, there is hope. Science does not know everything. Being a health advocate, when I recommened products, the best I could do is to look for clinical studies that shows positive results with specific nutrients and then I recommened products containing those nutrients.

      Science continues to evolve so hopefully, someone finds something concrete sooner than later.

    • Vicki Owens says:

      Hi, I am 44 and was diagnosed with PsA when I was 32. I've been on various medications but I am now on Enbrel/Etanercept injections combined with leflunomide. I've been great for about 18 months but am having a flare now. Possibly change of seasons, damp weather, recent stress or hormones (Or probably a combo of all of these). I hate the fatigue that comes with it, for me that is the thing that people just don't understand. I'm seeing rheumatology next week so hoping I can support there as I'm feeling a bit disillusioned at the minute.

    • I'm glad yoh are taking things positively. Never lose hope. Hoping for the best of you.

    • TXwife says:

      I was just recently diagnosed even though I've had spine pain and major joint pain for quite a few years. Only in October did the psoriasis rash show up in my armpits. Since I had already gone through many meds in pain management, my rheum started me on sulfasalazine which really helped! Except for the daily migraines it caused. So on to methotrexate. I'm still in searching mode, hoping we find my happy place.
      Besides the pain, the extreme fatigue is the worst part for me. Everything takes so much more effort and leaves me absolutely drained. Is there anything that helps that?
      We have a extremely strong autoimmune predisposition in my family with five out six of my mother and siblings dx'd with various AI illnesses and, so far, five out of seven dx'd with AI of myself and siblings and already have a few in our kids and grandkids. I'd rather pass down something other than this.

    • Sorry for the late reply. Unfortunately I haven't really found anything that takes away fatigue. Sometimes the only thing you can do is give in to it and rest. Water helps. As does very light exercise. I am thinking of writing a post on it soon. Feel free to message me if you want.

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