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Psoriasis for close to 40 years

My psoriasis began in my early 20’s. It was severe from the start. I had multiple treatments including topical steroids, PUVA, injections, antibiotics, methotrexate. I fought it every minute of every day, slept with gloves or plastic wrap on my outbreaks. It was worse on the palms and fingers of my hands although I’ve had it in just about every place at one time or another. Over the last decade or so, I’ve had bouts of IBS and joint pain & tendonitis. Only in the last few years did I realize this is all associated when diagnosed 4 years ago with PsA. I started on Otezla which made me throw up daily and cause depression. It cleared my psoriasis for a couple of months but stopped working and the psoriasis came right back. I was then put in Humira with wild success! No plaques no pain!! That lasted about 2 years. It was a hard stop and the pain was back worse than ever and started having flares in both wrists, neck and left knee. Got so bad I couldn’t go to work or walk much. Since that time I’ve been in Cimzia with no effect what so ever and now I am currently on Orencia since February. No effect so far so will try it for another month then I will change to another biologic. It’s been tough but I am going to fight this tooth and nail. Never ever give up!!

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Comments

  • ThisSucks
    11 months ago

    @mhstewart I was just switched to Orencia myself and wanted to see what your experience has been so far?

  • mhstewart author
    11 months ago

    It was not successful for me. I have since been switched to Taltz which is working well. My experience is as follows:
    – Have to go to infusion and take time off work
    – Gave me headache even after taking the tylenol prior to infusion
    – I experienced dizziness while one this medication
    – I had no improvement in joint pain and it seemed to get worse (had to start using a cane to steady my walk while on this medication
    – Psoriasis got worse while on this medication
    – Fatigue worsened

    I hope this is helpful to you and best of luck!

  • CathyD moderator
    1 year ago

    @mhstewart, you sound like an incredibly strong person. We really appreciate you sharing your story with us. I’m hoping that the Orencia will kick in soon for you and bring you some relief. If things continue the way they are at the moment, do you and your doctors have any thoughts on what to try next?

    Keep us updated and remember that we’re here, whatever happens <3

    - Catherine, Community Moderator

  • mhstewart author
    11 months ago

    Currently on Taltz loading dose (once every two weeks) and it has made a very positive difference in my joint pain. I can walk regularly and wear heels again! I can even walk around the block and further! So good to feel like I am back to normal. But this is the new normal. My joints have definitely been negatively effected from 18 months of severe pain, swelling, etc. I have one more injection on my loading dosage and will then go to once per month. During my loading dosage, I have experienced several side effects.

    – IBS symptoms
    – Headache
    – Thrush

    I will happily trade the pain for these side effects as I am able to move freely (for the most part). I still have joint achiness and some swelling – but overall better. I look forward to getting back to yoga, but my wrists, left knee and neck still are too painful for weight bearing types of exercise or yoga poses.

    I wonder who else is taking Taltz and what side effects they have experienced.

    Staying positive 🙂

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