Ask The Advocate: Advice For The Newly Diagnosed
For those with psoriatic arthritis, the condition can change how you live your life every single day. This condition is the center of the wheel that outreaches to all different aspects of life: physical and mental health, family, friends, and career.
If you're looking for a community that understands, then look no further.
Advice for those newly diagnosed with psoriatic arthritis
Our amazing group of psoriatic arthritis advocates answered a few questions to share their experiences and tips with the community. In this “Ask the Advocate” article, we asked our advocates to share their personal advice to those newly diagnosed with psoriatic arthritis.
Response from Leanne Donaldson
My best piece of advice for someone newly diagnosed is to be patient. I know, it is difficult. You've likely had a long journey to diagnosis and you are living day in and day out in pretty constant pain and fatigue.
The last thing you really want to hear is to be patient. But I say this so that you will be able to manage your expectations for treatment. We live in a world where if you get sick, you go to the doctor, take your medicine, and get better. All my life, from infancy until now, that has pretty much been my experience.
When you are diagnosed with psoriatic arthritis, it is likely that you are so relieved to have an actual diagnosis, a name for what is going on, that you might take it for granted that you will follow in line with the next steps. You got sick. You went to the doctor, you have a diagnosis, and now you have a "treatment plan."
Here is where you need to take my advice and be patient. Many of the medications used to manage psoriatic arthritis take 3-6 months to see any improvement. Finding what works for you is often a process of trial and error and it takes time. Being patient, you will be able to manage realistic expectations for treating your psoriatic arthritis.
See a rheumatologist
Response from Jim Snedden
See a rheumatologist. Then as you start having pains, you are going to want to carry some medication. I will sometimes carry naproxen and icy hot. Hell, I even have a battery-powered heating pad for my back.
Set appropriate expectations
Response from Elizabeth Medeiros
Something I wish I knew when I was diagnosed is that the primary goal of treatment is to reduce disease activity and prevent joint damage, not necessarily total pain relief. While pain relief is an excellent sign that things are helping, you may experience some pain--even in remission--due to joint damage or weakness.
When you're trying a new treatment and eagerly awaiting for relief, try to pay attention to the small signs that your PsA is becoming less active. That could be a reduction in pain, but it could also be more energy, a little less swelling, or clearer skin. Sometimes, improvement will be subtle, but don't give up! Try to be patient!
Find the right kind of help
Response from Alisha B
I would say find a doctor who tends to your needs and listens to you. You should have a health relationship with your doctor, it's not a dictatorship. They should respect your concerns and be available to your needs. If you come across a doctor who isn't, then it's time to find a new doctor. Find an online support group that can relate and help you through tough times. Online support groups have been heaven-sent for my mental health!
Sometimes you feel very alone with this condition but a support group will remind you that there are others who know exactly what you are going through and you can find great support. Finally, I would suggest finding an effective treatment whether holistic or prescribed! For me, it's been a liberating experience to find treatments that effectively work for my skin and joints. I feel empowered and confident that I'm making progress with my disease.
Talk about it!
Response from Joel Nelson
I wrote an article about this. Talk to people. I didn’t for many years and it meant I didn’t have the support in place that I needed. Friends didn’t understand why I disappeared periodically or was short-tempered due to pain.
It caused unnecessary conflict and strain on relationships that could have been avoided if I swallowed my pride/embarrassment/shock or whatever it was that was stopping me opening up at the time. I blame being a teenager; my natural response was to shout and run away.
Whereas now, with a much older head on my shoulders, I know I could have handled it differently. Let people in on your journey, after all, it’s a long road ahead and you’ll appreciate the company.
Ask The Advocate Series
This is a journey that many psoriatic arthritis patients follow, taking their conditions and their understanding of them into their own hands.
We are so grateful to have this particular group of advocates on Psoriatic-arthritis.com and build this community of shared understanding, support, and knowledge together. For more patient and advocate insight, we encourage you to check out our entire Ask The Advocate series.
- Ask The Advocate: The Importance of Psoriatic Advocacy
- Ask The Advocate: How PsA Impacts Daily Life
- Ask The Advocate: Psoriatic Treatment Experiences
- Ask The Advocate: Coping With Psoriatic Pain
- Ask The Advocate: Real PsA Diagnosis Stories
Want more insight into your psoriatic diagnosis?
Learning more is as easy as signing up for our email list. Our collective voices have a huge impact, and we hope you will add your unique voice. The best part? Your journey living with psoriatic disease is all you need to get started!
What advice would you give to those who are newly diagnosed with psoriatic arthritis? Share in the comments below!
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?