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.

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Comments

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  • notalone
    3 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
    5 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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