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.

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.”


My Dr. Said What?!

I still want to get to everything I have done thus far in battling RA. But right now, I REALLY have to get something off my chest. In November of 2009, my rheumatologist (who may not remain anonymous for long in my blog) prescribed a round of prednisone. My body got very mad about this and I could barely walk as a result of taking it. I know that steroids can be extremely helpful to some and it made no scientific sense that I felt worse off after taking them. But I DID, whether my Dr. believed me or not! This was the first pharmaceutical approach for me since my diagnosis. I had previously tried a steroid injection in my thumb, which did not work and hurt like crazy.

Once I finished the entire round of prednisone and felt a LOT worse off than before, I called to set up an appointment with my Dr., was told he was out of town, asked for another Dr. in the practice and told the gal on the phone that I really needed to see someone. I could barely walk. The joints in my toes were crying in pain.

I got an appointment with another Dr. who turned out to be much better than the one I was currently a patient of because he was a lot more thorough. He told me I had inflammation all over my body and should consider starting methotrexate, a low daily dose of prednisone and a biologic as soon as possible. At the same visit, I asked him if he could please fill out paperwork for me for a handicap placard.

As many of you know, this is a defining moment and it takes humility and a hard swallow of reality to take this step. But I felt desperate. The thought of walking multiple grocery store aisles, let alone getting from my car in a giant parking lot to the store’s front doors is overwhelming. I can’t do it anymore without a tremendous amount of pain.

The Dr. didn’t bat an eyelash and said he would be happy to sign the form–but said I had to smile for him as he flashed a smile at me. He wrote on the form that I had moderate to severe RA and checked the box for a temporary placard. The fact that he checked “temporary” was a relief because at this point I was pretty gung ho about kicking this illness to the curb. I thought–ok, I have until May 2010….

Where am I now?

I have since tried a shot of depo medrol in my arm. This helped slightly but I knew it wore off promptly after two and a half weeks because the pain came screaming back–not quietly, but loudly! And because my body was so angry about the steroid injection, it decided to attack a new finger with a vengeance. This finger is still swollen and on fire.

Overall, some days are better than others. That is why I find such solace in the words of other bloggers. You tell the stories of why autoimmune diseases are so misunderstood and difficult to deal with. To the world, I appear fine. I don’t look sick. I am on my feet. I am in great shape. Despite my illness, I feel like I am in the best shape of my life. But I am in chronic pain.

I am not due for another appointment until June and my handicap placard expires this month and well, walking is still very painful on most days. I only used the placard when I really needed it. It truly made a difference in being able to get around functions at my children’s school and make it across the giant parking lot at church, among many other places.

I sent a fax to my Dr. with a note about how helpful the placard had been and how grateful I would be if he would please sign the form so that I could renew it. I also included the previous form the other Dr. had filled out so he could see his notes. It took over a week and several calls to the Dr. office to get the fax into my Dr.’s hands. I finally received a call from his nurse last Thursday. She left a message on my machine that went something like this– “Dr. **** said he isn’t going to sign the form. They are really cracking down. If you have any questions, you can call back.”

My Dr. said what?!  So many emotions surfaced inside of me…

And then I cried. And then a lot of ugly four letter words sprung to my mind. I still feel slightly dumbfounded by his decision.

My next step is an appointment to see my podiatrist tomorrow. I am going to explain my situation to him and go from there. He has not seen my feet in a long time. The last time I saw him, I was having painful feet, but still didn’t have a diagnosis. Now there is damage to my toes to show him. But then what? Do I keep my current rheumatologist and have a “come to Jesus talk” with him about my pain?! Is he punishing me because I won’t start the medications he has been wanting to put me on? I am really curious about why he has done this. But do I seriously have to pay a $40 copay just to find out? Do I try to get in to see the “better” rheumatologist? I told him I wanted him to be my Dr. when I saw him and he squished up his face and said it would be tricky (office politics, no doubt) but said he would talk with my Dr.

In the meantime, I pray for the wisdom to make the right decision and welcome the insights of others.

(Also, in the meantime…please be patient with me as I navigate my way through WordPress. I am new to this land and there is much I must learn and much I want to do. Bravo to the bloggers that I first stumbled upon and have learned so much from and identified with so much. You guys are like rock stars! : ) Pollyanna Penquin was the first one I stumbled upon in a search about something RA related, I’m sure. Then I found Remicade Dream, RA Guy, and RA Superbitch. Thank you for the dedication you have to your blogs.)