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!

NSAIDs, DMARDs, and biologics: what role do they play in treating psoriatic arthritis? If you're not familiar with these acronyms, I explain them briefly here. I'm going to turn to a great article in the International Journal of Advances in Rheumatology to help me explain the use of these drugs for psoriatic arthritis.

NSAIDs

NSAIDs have been the mainstay of treatment for psoriatic arthritis for decades. NSAIDs are not used to treat skin psoriasis, but taken at anti-inflammatory doses, their symptomatic relief for peripheral arthritis, spondylitis, enthesitis, and dactylitis (components of psoriatic arthritis) make these drugs an important part of many patients' PsA treatment.^[1] NSAIDs' effectiveness is typically modest, but that is sufficient for some patients, and they can also be used in combination with DMARDs and TNF inhibitors. NSAIDs are primarily taken in pill form. Ibuprofen and naproxen, also known as Advil and Aleve, are two popular over-the-counter options, but there are dozens of prescription varieties. A few topical prescription NSAID options also exist.

In years past, there was concern that NSAIDs might worsen skin psoriasis, but thankfully studies have not supported that idea.^[1] Some of the major risks for long term NSAID use are in the gastrointestinal realm. It's important to keep regular labs while on NSAID therapy, and to consult your doctor if you experience GI distress.

DMARDs

If NSAIDs are not sufficient, DMARDs are typically the next step. Sometimes this step is skipped if your disease presentation is primarily axial because DMARDs don't seem to work for axial arthritis as well as for peripheral arthritis.^[1] DMARDs sometimes used in the treatment of PsA include methotrexate, sulfasalazine, leflunomide (Arava), hydroxychloroquine (Plaquenil), azathioprine (Imuran) and cyclosporine.^[2] These drugs are unrelated in all but name, so it's difficult to generalize how they work. Methotrexate and sulfasalazine are the two DMARDs most commonly prescribed for PsA.^[1]

Methotrexate blocks several enzymes that play a role in the immune system.^[3] It is not fully understood how methotrexate decreases the severity of arthritis, but... it just does, for many people. Also used to treat cancer, methotrexate is used in much lower doses for PsA and psoriasis. Many of the worst side effects listed in its prescribing information are mainly a concern at the higher doses intended for cancer, but there are still some side effects to be aware of. Nausea, vomiting, and abnormalities on liver function tests are the most common side effects.^[3] Methotrexate should be discontinued for at least 3 months before attempting to become pregnant - it can cause serious birth defects and pregnancy complications.^[3]
 
Sulfasalazine is a combination of an aspirin-like anti-inflammatory medicine with a sulfa antibiotic. This combination arose at a time when rheumatoid arthritis (the condition it was originally developed for) was believed to be caused by a bacterial infection.^[4] We now know that isn't true, but sulfasalazine works for many RA and PsA patients anyway, for reasons that aren't fully understood. Sulfasalazine is taken orally. Most patients have few side effects to sulfasalazine, but the most common ones are nausea and abdominal discomfort.^[4]

Biologics

The third tier of PsA treatment: TNF inhibitors and other biologic drugs. You've undoubtedly seen TV ads for these high dollar medications, some featuring celebrities who truly have PsA (golfer Phil Mickelson) or psoriasis (model CariDee English), and others with actors pretending to have one of a variety of autoimmune diseases that these drugs treat.

There are currently 4 biologics approved for the treatment of PsA: etanercept (Enbrel), adalimumab (Humira), infliximab (Remicade) and golimumab (Simponi).^[5] All 4 of these drugs are TNF inhibitors, which work by suppressing a very specific portion of the immune system, TNF-alpha, which is involved in triggering inflammation.^[5] Enbrel, Humira, and Simponi are delivered via self-injection under the skin. Remicade is given via infusion in a doctor's office or infusion center. There are a number of other biologics currently under study for the use in PsA including certolizumab pegol (Cimzia), alefacept (Amevive), apremilast, and ustekinumab (Stelara).^[6] We may see these drugs added to our treatment options before too much time goes by!

There are some very serious potential side effects to these drugs, the most common being an increased incidence of serious infections (less common risks include not-so-fun things like lymphoma, drug-induced lupus, new or worsening psoriasis, brain demyelination, and heart failure), but the positive results they can have are dramatic!^[7] It's a difficult choice that each of us must make as we weigh our treatment options. I've personally decided that biologic drugs are worth the risk, but I completely understand when other patients decide against biologics for themselves.

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I have personally tried 8 NSAIDs, 2 DMARDs, and 3 TNF Inhibitors with varying degrees of success and failure. I currently take 1 NSAID, 1 DMARD, and 1 TNF Inhibitor as the core of my PsA treatment. I welcome any private questions about my personal experiences with these medications. Email me at copingwithpsa [at] gmail [dot] com.

References
[1] Ceponis, A., & Kavanaugh, A. (2011, June). Psoriatic arthritis: advances in therapy. International Journal of Advances in Rheumatology, 9(2), 45-55.
[2] Emery, P. & Ash, Z. (2012, September). Psoriatic arthritis. Retrieved from http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/psoriaticarthritis.asp
[3] Cannon, M. (2012, May). Methotrexate. Retrieved from http://www.rheumatology.org/practice/clinical/patients/medications/methotrexate.asp
[4] Cannon, M. (2012, May). Sulfasalazine. Retrieved from http://www.rheumatology.org/practice/clinical/patients/medications/sulfasalazine.asp
[5] National Psoriasis Foundation. (n.d.). Treating psoriatic arthritis with biologic drugs. Retrieved from http://www.psoriasis.org/psoriatic-arthritis/treatments/biologics
[6] Bernstein, S. (2011). Cutting edge of treatments in psoriatic arthritis. Retrieved from http://www.arthritistoday.org/conditions/psoriatic-arthritis/psoriatic-arthritis-treatment-research.php
[7] Abbott Laboratories. (2012, September). Prescribing information. Retrieved from http://www.rxabbott.com/pdf/humira.pdf

Depression is common, underdiagnosed, and undertreated in patients with psoriatic arthritis.^[1] It's a study finding that doesn't surprise me.When chronic pain comes together with a chronic skin condition, it makes a great deal of sense when depression accompanies it. If you don't feel good and you feel like you don't look good either, it's a tough combination. Studies have found depression to be common among multiple forms of inflammatory arthritis, but in one study focusing on rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis, the psoriatic arthritis patients were found to have greater psychosocial problems - namely with mental health, limitations due to emotional health, and social functioning.^[2] The study authors point toward the combination of inflammatory arthritis with inflammatory skin condition as the reason for the greater effect on our mental health.

I was most depressed shortly after my diagnosis. I commonly describe the experience of receiving my diagnosis as something of a "grieving process", and depression definitely preceded acceptance. This is a chronic, painful disease that causes permanent damage. It currently has no cure. The treatments come with varying degrees of terrifying side effects. It can take months and years to find a treatment that works well, and there's no guarantee that any treatment will work indefinitely. The disease forces you to reassess your dreams and goals, sometimes taking them away from you entirely. There's a lot to be depressed about.

With everything we're up against, it makes a lot of sense to work with a mental health professional. Your rheumatologist (or any of your other doctors) can refer you to one. Just ask.

Here are a few other tips from Arthritis Today on warding off depression:

• Spend time with friends or join a support group.
• Do things you enjoy. If your arthritis prevents something, enjoy a modified version instead.
• Try positive thinking: instead of thinking, "This pain will last forever", think, "This pain will come and go."
• Make yourself feel pretty. Even if you don't feel like leaving the house, don't just mope around in sweats. When you look good, you can feel good.
• Don't berate yourself for your depression. It isn't a matter of discipline or character.^[3]

References
1. Jancin, B. (2011, February 15). Depression highly prevalent in psoriatic arthritis. Clinical Psychiatry News. Retrieved from http://www.clinicalpsychiatrynews.com/news/psychosomatic-medicine/single-article/depression-highly-prevalent-in-psoriatic-arthritis/d2d0a3b8c4801f4e0e6cc6f779e7c617.html
2. Salaffi, F., Carotti, M., Gasparini, S., Intorcia, M., Grassi, W. (2009, March 18). The health-related quality of life in rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis: a comparison with a selected sample of healthy people. Health and Quality of Life Outcomes, 7(25). Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2674445/?report=abstract
3. Arthritis Today. (n.d.). Ward off depression. Arthritis Today. Retrieved from http://www.arthritis.org/ward-off-depression.php

I know your rheumatologist is probably hassling you to exercise (mine is too). I know it feels impossible. Between the pain and fatigue, exercising is the very last thing you or I want to do most days. Here's the thing though - you'll feel much better if you exercise daily. Really.

It doesn't have to be for very long. It doesn't have to be very strenuous. Whatever you can find that works for you, just do it. Move those joints. Strengthen those muscles. Improve that range of motion.

Some forms of exercise are well suited for the arthritic body: yoga, tai chi, pilates, and swimming. All of these activities may require some modifications to suit your particular needs, but overall, they're much kinder than running or other high impact exercises!

The best I've ever felt since my PsA kicked into high gear was the two months where I got my act together and exercised everyday. My pain decreased. My energy increased. I had less need for medical intervention. Unfortunately a flare knocked me back and I haven't gotten back on the exercise train since, but I know it's worth it.

I just need to do it, and so do you. Let's stop making excuses.

Whatever your limitations, it's worth a visit to a physical therapist or occupational therapist to learn the safe manner to use exercise equipment! Don't be shy about asking your general practitioner or rheumatologist for a referral.