Coping with psoriatic arthritis
By Meredith, Pure Matters
Imagine one day you wake up, and suddenly you've got excruciating pain in your big toe. A few weeks later, the pain spreads to your left foot. Then it creeps up your right leg and settles in for an extended stay in your knee, causing swelling and pain that keeps you awake at night. Doctors put you through a battery of tests that all come back negative. Sounds awful, doesn't it?
It's exactly what my husband Scott went through, starting two years ago. He was 30.The doctor's first theory was gout. The swollen big toe -- that's a classic gout symptom, though aside from that Scott doesn't really fit the gout profile. While we waited for test results, Scott was limping around, and decided to take a season off from playing hockey -- his quality of life was being severely impacted.
"It made me a little depressed, honestly," he told me, looking back on that time, "because I couldn't do any of the things that made me me. You feel like you're not a whole person." (At that time, we were also living in a hotel after being displaced from our home by a fire, which I'm sure didn't help him feel comfortable.)
It took a week for the first gout test to come back -- negative. Then, another gout test. That took another week, and came back negative. He was tested for Lyme disease, which has similar symptoms -- another week, another negative. Scott's pain never subsided, and in fact had begun to spread. We didn't realize it, but when it reached his knee, it was a blessing in disguise, because the doctor extracted fluid from his knee to test for crystals -- a surefire sign of gout.
That test was done just before we were leaving on a vacation to Los Angeles, which, according to Scott, was the lowest point. We ended up cutting the trip short because he wasn't feeling well (and because we sort of hated L.A.). He limped through the terminal, limped onto the plane, and writhed in pain the whole redeye home. Looking back, he remembers thinking, "I just turned 30, how can I have the body of a 90-year-old?"
Good news was waiting for us at home: no crystals in the knee fluid, meaning this wasn't gout. The doctor gave up and referred Scott to a rheumatologist, who listened to his symptoms and without a single test, said, "I think I know what you have -- have you heard of psoriatic arthritis?"
Scott had had one brief psoriasis incident; apparently, that's all it takes to open you up to PA, which is what we know now that he was suffering through all that time.
The rheumatologist put him on a short-term drug for the swelling, and he saw improvement. After two weeks on that, he was put on methotrexate, a drug that's also used to treat lymphoma and leukemia. It helped but it also has a host of side effects -- it's tough on the liver (he had to get monthly blood tests to check his liver, and alcohol was off-limits), it suppresses the immune system (more sniffles!) and can cause birth defects (meaning we put plans to start a family on hold). Ultimately, it was worth the sacrifices -- his symptoms eased. Scott went back to playing hockey, and started to feel like himself much moreso.
After about a year on metho, we heard of a new drug, Enbrel, which doesn't have the same side effects. You may have seen pro golfer Phil Mickelson in ads for the drug, called Enbrel – after revealing that he has PA a few years ago, he's become the unofficial spokesperson for the illness.
Knowing that we wanted to get a move on with baby-making (I'm not getting any younger, people), Scott's rheumatologist switched him to Enbrel. The change was immediate.
"On the metho, I felt like I was 75 percent of myself -- stiff but functional. Within a week on the injectable, I felt 100 percent." He's still taking Enbrel once a week, with the same reliable results; he also takes Pure Matters Milk Thistle Extract, which is good for liver health, just to be on the safe side. He's so much better, and we are so grateful.
If Scott's symptoms sound similar to something you or someone you know are experiencing, here are a few words of advice:
Do not wait to see a doctor. If left untreated, psoriatic arthritis can do permanent damage to your joints. It seemed to take forever to diagnose Scott but his was caught mostly in time; he has about 98 percent of the joint motion that he had before. Not everyone is so lucky.
You're not alone. Psoriatic arthritis -- and all types of arthritis -- can affect anyone at any age. He was 30. There are lots of support groups online, and opening up to family and friends about what you're experience will help. It's hard to understand what someone with such a non-visible illness is feeling, but let people try.
Treasure your health. If you're feeling awesome today, enjoy it. Nothing is more important than your health, and you won't miss it till you don't have it. Savor feeling great!