And the Winner is…

I’ve been walking around as seronegative RA girl for over a year now because my symptoms present very much like RA and that’s what doctors have told me I have. I can’t explain it, but I have never felt a peace in my spirit about this diagnosis. The fact that my blood work has never shown a blip of anything hasn’t helped the situation. As a result of sharing this with people, some have said I must be in denial as a result of not accepting the diagnosis, others have written off the true nature of my illness and have assumed it must just be stress, or not dealing with my past or not willing myself to wellness hard enough. (I’m over it now. But it sure did hurt at first.) I mention this because it amplified my need to reach out to others in pain. I felt such a need to connect with people dealing with similar symptoms. People who know the struggles that come mentally, physically and spiritually when your body starts to fail you. And so, I went with the RA label because I needed a direction. At least I had a label, right? I know that many of you have gone years without even receiving a diagnosis of any kind. And I’m so glad I did. Because connecting with others has been incredible. My fellow sufferers get it, thank God. And they are supportive, non-judgemental and compassionate.

Like many of you, I am often digging for more information online and reading the latest studies. I just recently learned more about an arthritic disease I had never heard of before while doing research before bed one night–psoriatic arthritis. I was led to look into this particular disease by someone on the Road Back bulletin board mentioning it in an answer to one of my posts. Thanks, Maz! You are an angel. She said that many times people diagnosed with seronegative RA find out later that what they had really been dealing with was either reactive arthritis or psoriatic arthritis.

I nearly jumped out of bed when I read the symptom list for psoriatic arthritis the night I was researching. You might as well have put my name at the top. And it said that often times nothing shows up in a person’s blood work. Hello! And sausage toes are classic–oh, HELLO! I’ve always referred to my attacked toes as sausage toes. I knew immediately that psoriatic arthritis is what I have been dealing with all along. It just eluded an accurate diagnosis due to the fact that I’ve never presented with psoriasis of the skin. I felt certain that this must be the correct diagnosis in light of a recent and lovely new symptom of mine. It sealed the deal in regard to the diagnosis for me. This new piece of the puzzle has caused all of my once thought to be random symptoms (back and neck pain, hip and ankle tendon pain) to connect like a puzzle under the symptom list for psoriatic arthritis (PsA). My new symptom is psoriasis occurring under my nail beds–toes and fingers. And it’s become quite unsightly. Yipee. I can cover my unsightly toes with polish. But I’m not the fingernail polish wearing type. I have four boys. I couldn’t possibly keep up with pretty polish on my fingernails if I tried.

Needless to say, I didn’t sleep well the night of my discovery. I wanted to wake up my husband and say, “Baby, I know what it is now!” I couldn’t believe what I saw when I began searching for pictures of psoriasis of the nail. The photos looked just like my toe nails. The situation with my toes has been ongoing for about a year and for the longest time only involved my two big toes. I never thought much of it because I thought it was a fungal issue that wouldn’t resolve itself with over the counter treatments. I did finally mention it to my rheumatologist two appointments ago because when I took the polish off my toe nails recently, I was shocked to discover that several other toe nails had become discolored. And now my fingernails are involved. My fingernails became involved after beginning antibiotics. In just a few weeks, the appearance of my thumb nails has rapidly changed. Shall we have a look see at what is going on? I’ve included a photo of painted toes as well because it shows what the toes on my left foot looked like before I began AP. Once I began AP, I acquired a lovely new sausage toe on my left foot to match the beauties on my right. So sad…left foot always managed to visually stay out of the line of fire until now.

Pre swelling on left foot
Post swelling and psoriasis of the nail revealed

Here are the finger nails affected. You can also see the swelling of my left thumb compared with the right. This puppy was the first joint to ever swell up on me and cause pain. It’s the one that first put me in a rheumatologist’s office.

Note orange discoloration on right side of nail (left thumb)
What began as orange discoloration has become this and is now separating from the nail bed. (right thumb)

So, I’m actually psoriatic arthritis girl–or PsA girl. Seems like an open and shut case to me. And I have total peace about this diagnosis being the correct one. I presented my findings to my rheumatologist at my last appointment and he said that he agreed with me but wanted my nail situation confirmed by a dermatologist before coding my charts with the diagnosis since insurance would surely follow me with it for the rest of my days. I see my dermatologist on the 14th.

I don’t know how or why, but in all of my research, I don’t remember reading about this disease. Or maybe I breezed over it since I don’t have any red, raised patches of skin and thought surely that can’t be what I have. I’ve heard of psoriasis, sure. But  psoriatic arthritis, no. The symptoms of RA and psoriatic arthritis are very similar, which is why I received the diagnosis I did.

On the one hand, it feels oddly wonderful to know that what is going on with me has a name and is happening to others all around the world. And having a peace about my diagnosis is priceless. But on the other hand, I’ve caught myself dealing almost all over again with the feelings associated with being told you have a chronic illness without a cause and without a cure. The fact that I now have another issue to deal with that is advancing very quickly–my nails–does not delight me. What’s next, my skin? My AP doc mentioned  I might want to consider Enbrel at my last appointment in lieu of my recent nail activity. Not yet. But thanks for mentioning. For now, I will continue with the antibiotics. Doc is giving me six months on these particular antibiotics before I have to call it quits with them. Fortunately, there are also success stories of people with psoriatic arthritis seeing improvements. Thank God!

It’s important to me to note the symptoms of psoriatic arthritis in the event that it may help someone else. Here is what can be found at WebMD:

What are the symptoms of psoriatic arthritis?

“Psoriatic arthritis frequently involves inflammation of the knees, ankles, and joints in the feet and hands. Usually, only a few joints are inflamed at a time. The inflamed joints become painful, swollen, hot, and red. Sometimes, joint inflammation in the fingers or toes can cause swelling of the entire digit, giving them the appearance of a sausage.

Joint stiffness is common and is typically worse early in the morning. Less commonly, psoriatic arthritis may involve many joints of the body in a symmetrical fashion, mimicking the pattern seen in rheumatoid arthritis.

Psoriatic arthritis can also cause inflammation of the spine (spondylitis) and the sacrum, causing pain and stiffness in the low back, buttocks, neck, and upper back. In about 50% of those with spondylitis, the genetic marker HLA-B27 can be found. In rare instances, psoriatic arthritis involves the small joints at the ends of the fingers. A very destructive form of arthritis, called “mutilans,” can cause rapid damage to the joints of the hands and feet and loss of their function. Fortunately, this form of arthritis is rare in patients with psoriatic arthritis.

Patients with psoriatic arthritis can also develop inflammation of the tendons (tendinitis) and around cartilage. Inflammation of the tendon behind the heel causes Achilles tendinitis, leading to pain with walking and climbing stairs. Inflammation of the chest wall and of the cartilage that links the ribs to the breastbone (sternum) can cause chest pain, as seen in costochondritis.

Does psoriatic arthritis cause inflammation of organs?

Yes. Psoriatic arthritis can cause inflammation in other organs, such as the eyes, lungs, and aorta. Inflammation in the colored portion of the eye (iris) causes iritis, a painful condition that can be aggravated by bright light.

Corticosteroids injected directly into the eyes of patients with iritis are sometimes necessary to decrease inflammation and prevent blindness. Inflammation in and around the lungs (pleuritis) causes chest pain, especially with deep breathing, as well as shortness of breath. Inflammation of the aorta (aortitis) can cause leakage of the aortic valves, leading to heart failure and shortness of breath.”

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16 thoughts on “And the Winner is…

  1. What great news about the diagnosis! Such a different feeling to know, “Yep, that’s it.” So sorry about the nails for sure! And the swelling in your second toe picture elicited a, “Duuuuuuuude,” from me. Excited to hear about the exercise advancements and the mental clarity improvements!!! I think about calling every day, and almost made it today, so I’ll catch you some day this week for sure!
    Love

    P.S. I just watched the first two episodes of “Raising Hope” on Hulu and loved it 🙂

    • Hi Sweetie! It is a totally different feeling. SO right. Your dude comment made me laugh this morning! I’m sayin’ girl. No worries about calling. We always catch up eventually. I’m dying to see those little ones of yours–and you and your honey, of course. Mom sent pictures the other day. Can’t believe how grown up your little guy looks! I haven’t heard about “Raising Hope”. You’ll have to fill me in. Hope you have an awesome week! Love you!

  2. That makes sense and glad it brings some light to a confusing situation. That must feel good. I’m seronegative also (see my latest post) but have very symmetrical display of symptoms which is not always the case with PsA. I also have never had any typical psoriasis symptoms. A close friend at church has PsA and we always compare things.
    Andrew

    • It does feel good to know. Will have to check out your latest post now. My symptoms are somewhat symmetrical. My pinkies match and a couple toes. Also having issues with both ankles–just not at the same time. But then there are other joints that don’t match. Not quite sure where there puts me. I read there are five different types of psoriatic arthritis. That’s neat you have someone else to compare symptoms with.

  3. Glad to hear you were able to resarch and analyze your symptoms, too bad you’r doctors could not have done this. Just proves the old saying, if you want something done right … do it yourself. Interesting about the heel, it is not uncommon for my heels to swell and walking down stairs in excruciatingly painful for me. May look into this some more for myself. And although I am more adjusted to needles, now that I have given myself shots over the last 7 years, they would have to knock me out before I let them give me a shot in to my eyes!!
    Hope the rest of your week is good and have a great weekend.

    • You have heel pain too? Stairs are totally not my friend either and I live in a two story. You should see me walk down the stairs in the morning. It’s a funny sort of sideways descend. I saw a podiatrist before I saw a rheumatologist due to heel pain and he thought it was plantar fasciitis originally. I am totally with you on the needles in the eyes. When I read that I was like–oh, no way! Freaky! Hope your latest shot was bearable and you have a great week too.

      • Haha I had to laugh when I read this, I thought I was the only one that did this. I can walk upstairs reasonably well but coming down them is horrible. On a good day I walk down stairs like Herman Munster … on a bad day I do the side ways, holding onto the rail thing as well. Oh well, we do what we have to to get by.

      • That’s funny! I tell you, brother, I feel like an old lady walking down the stairs in the morning. I have to grip the rail and hold on for dear life too. : ) Funny how going up the stairs is no biggie either. I work at stretching my calf muscles as much as I can. They are always really tight. I know tight calves don’t help my old lady descend!

  4. It’s hard to be relieved that it’s not RA when it’s still an autoimmune disease, but I think I understand what you mean. Mixed emotions!

    I hope that the AP still works for you, but if the time comes that you decide to try Enbrel, don’t drag your feet like I did. Self-injecting is not difficult, and the relief is fabulous.

    • Thanks, WarmSocks. I sure hope AP works too. And if and when the time comes, I also hope I won’t drag my feet with Enbrel either. If I get there, I’ve already decided that I am not going to read the entire drug insert. Too much information is not always a good thing.

  5. Apparently, I missed this post when I responded to the first. Maybe it is time to see a new rheumatologist for second opinion. Get everything straightened out and be patient. Email me if you need anything. Take care of yourself.

    • My rheumatologist advised me to see a dermatologist to have my nails looked at. A dermatologist will best be able to determine what is going on with your nails and recommend a treatment plan.

  6. Hey…came upon your blog through the internet search…albeit looking for toes that look like mine. Haha…found yours …I see you havent been active online in awhile…hoping all is well…
    Brenda…just another psa gal

    • Hi Brenda,

      Great to hear from another PSA girl! Thanks for leaving a comment.

      Hope to post soon. Maybe I’ll even put a current pic of my well behaved toes up.:) Things are better than they have been in the past. Right now, I’m just glad to be on the other side of Christmas. I absolutely adore the holiday, but bad food, four boys needing to eat and be occupied 24/7, and family staying at the house took a bit of a toll on me. In repair mode right now and looking forward to the new year! Hope this finds you well! Happy New Year!

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