Like Lynda, who I'll be interviewing later in the week, Claire is one of the leaders of my local support group. All three of us ladies have spondylitis as a component of our psoriatic arthritis. We have varying degrees of peripheral joint involvement too. Claire has had great success with some alternative treatments, so I was interested to ask her a little more about her tricks and tips for coping with this disease!
When did you first start experiencing symptoms of PsA? How old were you?
Symptoms were a progression from the initial spondylitis diagnosis which mainly affected the SI joints. The symptoms actually began a few weeks after I was in an accident in which I sprained both wrists and both thumbs. The doctor gave me an article that told how psoriatic arthritis can develop following an accident, and I think that is what happened. I was in my 50s.
How long did it take for you to receive your diagnosis? What do you think delayed the diagnosis (if applicable)?
The initial diagnosis of spondylitis took 5 years. The PsA diagnosis came quickly. I had had skin issues since 2002, but the dermatologist I was seeing said it was dandruff. Eventually, his nurse sent me to another dermatologist who diagnosed psoriasis. A few months later I had the above mentioned accident. Then a few weeks later, I had my appointment with my rheumatologist, and he quickly gave me the diagnosis. He told me he was just waiting for me to come up with a skin issue! And he felt the accident triggered the PsA to develop.
How has your disease changed or progressed over time?
My hands and wrists used to hurt so badly that I could hardly use them. They are about normal now.
What combination of medications, treatments and tactics has been most successful for you in managing your PsA?
My miracle medication is low-dose-naltrexone, 2 mg, and I also take 400 mg plaquenil. I take one 75 mg Voltaren about 1 time a week, and use Voltaren gel if I need to, usually once or twice a day several times a week. I also take mega-high doses of fish oil, and high doses of tart cherry extract capsules and broken-cell-wall chlorella, all of which have effectively eliminated most all inflammation. Additionally, I tape with kinesio tape if I have pain and need to play my saxophone. Cold laser or acupuncture have helped in the past and if I get tendonitis in the wrist I use a wrist support wrap.
Have you ever experienced any periods of remission?
I would say I am in remission.
What do you attribute that to?
I attribute it to the above mentioned medications and supplements.
Do you expect to see a cure for PsA in your lifetime?
About the cure, I really don't know. I haven't followed the research on it at all, but I know they have discovered genes associated with it. I don't know what would happen if they figured out a way to "turn off' certain genes. That may have negative implications in other ways.
What is the most important advice you can give to someone who was recently diagnosed with PsA?
Be your own advocate. Read up on it, preferably in medical journals. Try as many "external" treatments as you can such as cold laser therapy, acupuncture, occupational therapy, etc., in an effort to try to keep reliance on medication to a minimum. If you aren't thoroughly happy with one doctor, try another one.
Thanks Claire!
