Long road

I have had PsA for at least 10 years. I think the whole thing started when I stepped out of a truck wrong and rolled my Left ankle. I had no broken bones but my ankle was seriously messed up. I recovered from this but had chronic pain and instability in that ankle.

Strangely, I began having right foot and ankle pain as well. I also developed a painful scaly rash on the outside of my right foot. I went everywhere, primary care, orthopedics, podiatry, dermatology. I was getting steroid injections in both feet and ankles. One orthopedist wanted to fuse my feet and ankles. I declined that. A dermatologist recognized my rash as psoriasis.

After listening to my story, he sent me to a rheumatologist who put me through a complex battery of tests. I had developed an erosive deformity of my L distal joint in my index finger. I was rheumatoid negative, had a high ESR and cRP. I was diagnosed with PsA. We started with NSAIDs and methotrexate without good results. I do not remember the order but I have been on Embrel, Humira, Otezla and a combo of Humira and Otezla. The Otezla was like a miracle but I lost my insurance and can no longer afford it.

My symptoms are severe right now. I can hardly walk due to left ankle pain and my right shoulder is killing me. I am concerned I am developing a frozen shoulder. I have had significant loss of strength. My fingers are stiff and lock and click. My left hand is the worst. I just seem to hurt all over, fatigued, horribly depressed. I keep trying to push on but my activities have become somewhat limited. Thanks for listening. I don’t like to gripe but I just needed to put this out there. This is my first experience with support groups. I really don’t know what I am looking for.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

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  • josie
    2 months ago

    I am truly aware of your situation all of these stories I can definitely relate to. I don’t know if there is an answer due to the cost of the biological drugs and insurance I have no idea what we’re suppose to do, how can anyone pay those costs? Km on Cosentyx now for the past 12 weeks my skin is Better but exhausted and in pain all over most of the day worse at night. I don’t think anyone really has a good report to share, everyone sounds pretty hopeless. As for me prayer is all I can count on I pray daily for the Lord to give me strength to go on living, so I can help my husband if fifty years next month, he has heart disease and ulcerative colitis. I will add u all to my prayers daily. God Bless

  • notalone
    5 months ago

    This is my first time signing up and responding to a post. It’s 4;05 eastern time and just lying in the dark yet another night with pain and insomnia. But , I know I’m not alone. I am 59 yr old female. I have had psoriasis from age 5 I was diagnosed in my 20”s with fibromyalgia, psoriatic arthritis and osteoarthritis. You name it, I’ve tried it as far as meds. Enbrel , Remicade, Humira. I have had both knee replacements and am currently recovering from left shoulder rotator cuff tear. I am currently out of work , but normally work with special needs pre-school children full time and per-diem at a local hospital as receptionist. I’m a mother of 2 married children. Grandmother to a beautiful healthy 4 yr old grandson . I don’t know how I go on each day. My nights are full of sleepless , horrible pain. But by the grace of God , I wake each day , give it to the lord , and start all over again. I don’t know what advice to give , other than , don’t give up. Each person is different and responds to meds differently. I have yet to find the right one. As much as I , or any of us feel alone , I know we are not and it’s good to know there is a community of us out there , suffering from the same disease/ illness with no cure , yet , we all can find comfort in each other. Stay strong. One day at a time. Keeping you in prayer. God Bless (notalone)

  • Leanne Donaldson
    7 months ago

    It sure sounds like it has been a long road indeed, @acknud ! It sounds like you have really been through a great deal. It is difficult enough trying to find a combination of meds that work, it must be very frustrating to not have access to those meds because of insurance coverage. It’s like a Catch 22 for sure.
    Here is an article I thought you might be interested in
    https://psoriatic-arthritis.com/answers/paying-for-meds-without-insurance/

    Hopefully you will be able to get a few moments of pain relief in the future to give yourself a bit of a break from the constant pain. Have you tried any alternative therapies? Here are a few you might be interested in https://psoriatic-arthritis.com/treatment/complementary-alternative-therapy/

    We are here anytime to offer our support and understanding as you navigate this long road. You are not alone! -Leanne, PsA Team

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