Kathleen Gallant, 45, was diagnosed with psoriatic arthritis in her mid-20s, although she was in pain for years before it was diagnosed. In the midst of intense pain, hospitalization, and joint replacement surgery, she felt isolated and alone; she had never met anyone else with psoriatic arthritis. She founded a support group in Pittsburgh and it has changed her life.
The good news for psoriatic arthritis patients is that there's a growing list of medications that can help treat the disease, from anti-inflammatory drugs such as Aleve to disease-modifying antirheumatic drugs (DMARDs). The bad news? Some of these drugs can have unpleasant side effects, such as headaches and nausea.John Montemarano, a 55-year-old retired director for the New York City public transportation system, put the pieces together that he might have psoriatic arthritis after being diagnosed with mild psoriasis in his mid-40s. He started to feel unusual aches and pains, but avoided getting a diagnosis because he shuddered at the thought of having to start treatments—and experience their potential side effects.Montemarano has now been on Humira, a DMARD medication, for his psoriasis since 2009, and it's also helping to quell his psoriatic arthritis-related joint pain. "The truth of the matter is, it's better taking these medications than [it is] not," he says. "Within 3 months of taking medications, I was back to running on the treadmill and playing full-court basketball."Another frustration for patients is that many people stop getting relief from medications after a few months or years (Montemarano says Humira's effectiveness has worn off for him over the years). For other patients, medication doesn't work in the first place. When this happens, Dr. Ogdie says doctors try out another treatment option. "I wish we knew the predictors of a someone doing well on a medication," she says. RELATED: Is It Possible to Have Psoriatic Arthritis Without Psoriasis?
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Getting involved with organizations like the Psoriasis Foundation has taught me to be my own advocate. Instead of being a victim of my disease, I am an empowered patient.

It has also been a great motivator, and when I'm helping people deal with psoriatic arthritis, I forget that I'm that person as well.

And I've been that person since about the age of 12. I was in pain but doctors always dismissed my arthritis as growing pains. My dermatologist thought I had a fungal infection instead of psoriasis, and they never put two and two together. Eventually my doctor diagnosed me with arthritis, but just told me to take Motrin for the pain.

I was officially diagnosed with psoriatic arthritis when I was 26. By that point, my neck had started to fuse, my jaw was fusing, my knees would swell really badly, and I was walking with a limp. When I could barely walk anymore, my dad came to me and said I needed to see a specialist.

Before that, I didn't even know what a rheumatologist was, and my doctor had never suggested that I see anyone else. I come from a family that always looked to natural ways to heal whenever possible. We kept trying things like changing my diet, and I spent about five years— and a lot of money— going to chiropractors and naturopaths.

The gist of it is that I didn't really know what to do. I honestly thought I could cure my psoriatic arthritis naturally. And maybe some people do. I believe in holistic medicine and chiropractors, but they just didn't work for me. Looking back now, I think if I had gotten help earlier, I don't think my body would have as much damage.

I was hospitalized for 11 days

When I was finally diagnosed, I was put in the hospital for 11 days because I had so much inflammation. They started me on anti-inflammatories and systemic medications. I didn't want to go on methotrexate because of its possible side effects, but we couldn't get my condition under control no matter what we did. With methotrexate, it was about 30% under control; it worked only to a certain extent.

Throughout the 1990s, I was on pain relievers, anti-inflammatories, and systemics. By 1997, I had to have wrist replacement surgery in my right hand because mine was destroyed. (Ive had the surgery again since then, and will have another this year.) I was in intense pain, and Id already been on disability because I couldn't do anything.

My doctor had been recommending a biologic for years, but I was dismissing his suggestion because I was scared to take it. He finally asked me what the risk really was since my quality of life was so bad. I started taking one in 2003 and it has really helped me.

Once I started feeling better, I decided to try and go back to school so I could get a job eventually. I took one class and after things got easier and I could drive better, I started taking two and doing more things in general.

One thing I learned in the hospital—in occupational and physical therapy—was everyday things. I learned how to run my sweeper and got a tool that could help me get out of the bathtub. I used these kinds of work-arounds when I went to school. I ruined a lot of textbooks because I would tear out a chapter at a time so I could carry them with me.

I had no social support

In 2003, I also decided to start a support group in Pittsburgh, because I had never met anyone else who had psoriatic arthritis. I felt very isolated and I didn't have any social support. I wanted to interact with others who had this disease. I saw that I could change peoples lives by having a meeting, just giving them a place where they could come together and talk.

I was planning on getting my degree in anthropology, but I changed it to public service. I now plan to work in the nonprofit sector. The experience with other people with psoriatic arthritis really changed the course of my entire academic career. I am now on the Psoriasis Foundations board as well as the international board, where I am in charge of advocacy.

I am still in a lot of pain. I have nerve damage that can make it difficult to even touch my skin, much less sleep at night. But Ive learned to work around this. When I go to an international meeting, I just have to plan for a week of downtime after I get back. It's extremely difficult and really wipes me out.

But I've learned to plan everything before I go. I plan time to rest, how to get from the house to the airport, and how to get wheelchair assistance when I need it. When I get to a foreign country, I never know what I am going to run up against. Luckily I'm not alone, and when I meet up with my colleagues, things are always better.

As told to Tammy Worth