Coping with Psoriatic Arthritis

Lynda is one of the leaders of the support group that I attend locally. Not everyone in the group has PsA, but Lynda is one of the handful of folks who do. I asked her to answer a few questions about her experiences with PsA.

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When did you first start experiencing symptoms of PsA? How old were you?
It manifested when I was 40, although I may have had minor symptoms a few years prior.

How long did it take for you to receive your diagnosis?
It took 12 years.

What do you think delayed the diagnosis?
Idiot doctors is what caused the delay! Granted, this is hard to diagnose. They thought I had MS or Lupus. But when they never had any positive test results, they said fibromyalgia. During this time I saw 2 rheumatologists and the word arthritis never came up - I consider them the idiots!

How has your disease changed or progressed over time?
I had lots of crazy things in the earlier years, like "burned" skin rashes, psoriasis, and weird rashes on my legs. Smells, noises and lights bothered me. It was as if I was already in a sensory overload, so I couldn't add any extra without what I now know as causing a flare. I couldn't walk up stairs without my whole head and neck locking up. At strange times I got diarrhea. I couldn't tolerate any exercise (still can't).

It now seems to have settled in. I think my joints have all been damaged, and the enthesitis is what seems to cause the trouble on my spine. If I push, pull, or over-do it, my spine inflames and then the muscles get crazy nearby. No more skin reactions. I only get diarrhea now when the muscles in my midsection spaz out and tighten up. Of course, I can get a lot of muscles involved and then I'm in bed with hot muscles and no energy and lots of pain: a flare. 

What combination of medications, treatments and tactics has been most successful for you in managing your PsA?
It is just that, a combo that works, not any one thing. Massage and heat, stress reduction, and careful movements (like limiting stairs). NSAIDs, DMARDs, pain and nerve calmers. Plus muscle relaxants and of course the anti-TNFs work for many people! And I keep prednisone to try and stop flares!

Have you ever experienced any periods of remission? If yes, what do you attribute that to, and if no, do you hold out hope that you will have a remission in the future?
I seemed to have a remission at the worst point in my life, after a divorce. I guess I needed to be free from that one. I can't answer about the hope part. I am trying LDN (low dose naltrexone, a medication sometimes used off-label as an alternative treatment for PsA and other autoimmune diseases), so that suggests I am acting on hope, but I just live each day the best I can. I don't hope too much.

Do you expect to see a cure for PsA in your lifetime?
A cure? Maybe, again, I don't live my life on hope, nor do I on a cure.

What is the most important advice you can give to someone who was recently diagnosed with PsA? 
Know that it is a combination of things that help! There is no one miracle! You have to get together a program of all of them to live somewhat normally! That goes back to the heat, massage, dmards, etc. answer. Know that this doesn't kill us. We just have to have a program and adapt our lifestyle.

Thanks Lynda!

Coping With Psoriatic Arthritis from Mary PsA on Vimeo.

The images in this video document the first year of my life after being diagnosed with Psoriatic Arthritis. The tone of the music and images fits with the tone of most of that year. It probably looks very familiar to anyone else who has been through it too. Thankfully it ends on a better note: making moves toward a less painful life via exercise and modern medicine. It may not seem like a much happier turn of events if you've never lived with this disease, but if you've experienced successful treatment with a biologic medicine, you know how life changing it can be. The accomplishment of exercising is no small matter either, even if you're a twenty-something exercising with the elderly. I rock those 3 pound weights, thank you very much.

References:
Sandler, M. (2005, August 23). Music in 5 keys - F. [MP3]. Raleigh, North Carolina: Unsigned. Retrieved from http://archive.org/details/m5k

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!

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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!