Joining the club...

Welcome Greetings and Introductions
1

Shortly after my 30th Birthday, I had woken up and noticed a swollen ring finger. Originally thinking I had knocked it, or hit something with my hand that it would go away, I paid it no mind. Fast forward a month later, and still no sign of swelling decreasing, I began to get nervous. Little did I know this would spark a 2 year journey to a diagnosis of PsA.

Needless to say, during my period of weird swollen finger to final diagnosis of PsA, I had a whirlwind ride, rollercoasters of emotions. I had seen countless docs and got advice from individuals who really make you question the healthcare system (at least in the US). Fortunately, I live close to NYC and have access to some of our countries best doctors for this type of disease and am now beginning to explore my options.

FWIW, my progression with diagnosis went something like this:

Month 1-3 - Urgent Care (Re: Swollen Finger Complaint). Blood Test showed elevated inflammatory and signs of AI disease, fwd to specialist.

Month 3-6 - Rhumey #1 tells me it is not arthritis, and we should “monitor” it to see what happens (this is after him running a Titers blood work on a return visit).

Month 9-12 - Orthopedic Surgeon tells me it is definitely due to trauma and that the finger deformity is common in trauma incidents and typically not operated on.

Month 12-15 - 2nd Orthopedic Surgeon (Top 5 in the US) explains this is likely Auto Immune related, and is actually extremely well informed on Auto-Immune issues. Gives me recommendation to top Rhumey in NYC. (Not the news I wanted to hear, but finally some headway!)

Month 15-18 - Rhumey #2 takes detailed blood work, but diagnoses my condition as PsA at first physical inspection without even getting results back! Results come in, and it is confirmed PsA diagnosis. (Fear and relief at the same time!)

Month 18-Current - Seeking out 2nd, 3rd opinions with other Rhumey as well as Naturopath doctors on steps to take regarding medication.

Fast forward to now, I have just turned 32 and for the most part still have my same swollen finger, and pain in my left ankle/foot. General consensus here seems like I need to start some sort of medication ASAP, like most, I am just nervous about side effects or potential cancers that come along with drugs like Humira.

I’ve spent the better part of the evening reading different individuals journeys with different forms of this disease, and I have never resonated so deeply with the words I’ve read. The depression, feeling of solitude (in relation to the disease), and just general anxiety and stress that come along with this during the day to day life can be crippling in itself! For myself, I guess this post is me finally coming to terms with me giving in to some sort of treatment (medication wise) and putting this behind me so I can get back to living a somewhat normal life. Thankfully, I have a supportive wife, and supportive extended family to help me cope, but at the end of the day, we still need to do what is necessary to function to the best of our abilities in our own bodies!

Everything I feel is going to start first and foremost with a positive attitude and being in a controlled state of mind!

Thanks to all who have shared their personal stories!

Chris

1 Like
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Welcome, And are you sure you weren’t describing my own journey in emotional terms at least? I got a quicker diagnosis than you, but certainly hesitated on the meds front.

Three years down the road, I’m doing well on Benepali (bio similar to Enbrel) for the past three weeks. And nothing beats coping better (as there’s a lot to cope with too) than a positive attitude and a controlled state of mind. I just took a while to get there. Quite a while.

3

Welcome! I’m using a local doctor in Westchester County but have been very glad to have easy access to doctors in NYC this past year for my daughter.

I was 36 when I was diagnosed. My feelings about meds has been that aggressive is better. I’ve got a long time to live and the longer I delay major joint damage the better. Nothing’s perfect but I’ve certainly slowed joint damage,

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Not sure this is a club you wanted to join, but there is a lot of good information here. It’s too bad that it still takes a long time for the doctors to figure out what is going on.

Good luck with the initial medication, I hope it works well for you.

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I think most of us has gotten the run around with a Dx, you just have to be your own advocate. I am on my 5th Rheumy, I would fire her, but I am just tired of filling out new doctor’s forms…
So welcome to the club!

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Yep like others have said… it does take a while for a while for Ortho’s… regular docs, to figure out what to do… I can tell you what has worked for me with docs is bugging the hell out of them… remember at the end of the day your paying them for services so I get my moneys worth. Not that it always works, but I did get the run around at first. But now I do have to say I do get little more attention than at first. Your story resembles mine. Started with a stiff wrist and went on from there. I’m still new myself and learning. What’s been the toughest is going from very active to learning how to know my limits…because not sure about others but I’ve had some flares that are the worst feeling I’ve ever felt. But in the same sentence I am stubborn and tell myself I ain’t stopping what I enjoy… but will tell you learn your meds and figure out what works. Tell them exactly what’s wrong… take pics because one day you might be swollen and then the next nothing. It’s a roller coaster of wondering what’s next or what’s going away today. Hope that made sense. I am currently on Humira/Sulfasalizine and Plaquinel. Heat is your friend as well as ice. Hot showers/ ice packs after activity.
but first is get a rhemy and get on meds the quicker the better cuz it don’t take long for the shit to do damage.

I could go on and on… but that’s my initial take.
Bob