Right and Wrong about PA

I am a BIG fan of Phil Mickelson. I have been for more years than I count. He was my go to guy after Nicklaus moved to the Senior Tour (who is still my all-time favorite golfer).

I appreciate that Phil shared his story about Psoriatic Arthritis (PA) in recent days. But he’s got it wrong and I have no desire for the wrong information to be out there about a disease that many suffer from and others are now learning about. First, it was mentioned during the Masters that he was suffering from a chronic disease. Commentators mentioned it often and for some reason, I knew he had PA. Why? Because people don’t like to share this one because others assume that means you have psoriasis.  Psoriasis for some is just awful, especially if it covers large areas of skin that others can see. I have had psoriasis for most of my life but believed I always had dandruff.  For me, it is the worst on my scalp and ears.  Just awful.  Rheumatoid Arthritis does not have this stigma. I wish he hadn’t waited to share, since he has since shared.

Why do I care so much if he gets it wrong? Because I have psoriatic arthritis.  I was not diagnosed in a matter of days or weeks as he was. His journey started in June and had the help of the Mayo Clinic. He has admitted that the pain came and went, so without knowledge, he too could have been a longtime sufferer. But for most of us, it takes up to a year or more for a diagnosis. For me, it took over 2 years, one unnecessary and painful surgery that has forever ruined the mobility in my left foot, and many doctors (and a ton of money).  When I finally was referred to a rheumatologist, it took months to get an appointment.  When I moved to Omaha, NE, again it took months to establish care with a new doctor. There are not enough doctors in this field, no matter where you live.

For Phil to have the kind of debilitating effects of not being able to move due to PA in his hips, knees, shoulder and finger, I find it hard to believe that after 3 Enbrel shots he is 90% back to a normal quality of life and has even said he will be cured in no time but definitely in a year.  I don’t doubt the pain he suffered. Not one bit. But when I was at my worst, waiting to see that rheumatologist in Raleigh, NC, my left knee would blow up and look like an elephant knee. They would drain it constantly.  My right hip would be so painful, I could not even roll over in bed or do much else.  Quality of life – nonexistent for me.  When they took blood, my sed rate (a marker of how much inflammation is in the body) was over 500. Normal person: under 20.  You don’t get cured. This is a chronic disease for life.

Yes, I too have used Enbrel (and other drugs). But when they saw how bad it was, I was giving myself injections twice a week.  Phil indicates he has given himself 3 injections, one each week.  Maybe his PA responded that fast but I highly doubt it when I think of all the people I talk to in support groups who have had the same symptoms he mentions; that I have mentioned. Even with twice-weekly injections, I was not pain-free after 3 weeks like Phil. But if this happened for him, I am very envious for the quick response because I know the benefits of a diminished quality of life to one that seems “normal” again. Yeah for him!

I think Phil needs to be careful about saying he will be cured, that he will stop taking any medication after one year.  PA is NOT a disease that has a cure. One can only manage it.  It is very true that you can have a flare up and things are awful and then some days or a week later, you may feel just fine or it moves to other body parts. This does happen and he needs to prepare for his life to be like this.  He needs to look at Bob Murphy, another golfer with PA, as a guide to what he has been through on the Tour and what he still going through over 20 years later.

Why do I care so much? Why am I little agitated? Because he has the ability to bring about awareness to this disease and awareness is always of benefit. But I don’t want others to have false hope or inaccurate information. As I type right now, my right index finger cannot bend at all. No matter what I do, it is pretty much straight right now.  It has been like this for about two weeks. I am already on medicine for my PA, but even medicine will not prevent flares sometimes.  There is no predicting which joints will be affected, or when, or for how long. And the medicines I have been, they lose their effectiveness over time and new ones must be explored.

I am thankful Phil is sharing his story but hope this brings to light that his doctors have not informed him properly on what PA truly is, what his life could be like, and what to expect. And that is the biggest tragedy of all.