Psoriatic Arthistis

By lilmellie Latest Activity November 23, 2011 at 5:18 pm Views 12,592 Replies 15

lilmellie

I am just wandering if anyone has been diagnose with psoriatic arthritis. I was just recently diagnose not too long ago but thankfully it is not bad.

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  • badtikr
    badtikr June 19, 2013 at 8:38 pm   
    Edited June 19, 2013 at 8:43 pm by badtikr

    Not officially but I am pretty sure I have it. I have been diagnosed with psoriasis since 2008 and I started experiencing extreme joint pain about a year later. I have noticed some alarming changes in my wrists, hands and feet. if I can give anyone any advise at all its make sure your heath care provider, (the one who you are trusting with your correct diagnosis and subsequent treatments), is more than familiar with psoriasis and or psoriatic arthritis. That they are experts. I have found that many dermatologists are not all that familiar with the rarer forms of psoriasis, The co-occurring conditions that happen so often or of the many treatments available for persons with more than one manifestation.
    I even had one Kaiser Dermatologist look at me like I was wasting her time, ( as I sat there almost in tears), and tell me "you know there's no cure right?"

  • SuSewSew
    SuSewSew March 31, 2014 at 2:35 am   

    After 27 years of being told I had RA turns out it's Psoriatic Arthritis. I do not blame anyone as the tests were not as sophisticated then and the meds weren't specific either. Turns out I am in the under 5% of those diagnosed with PA that exhibit with rare symptoms mimicking RA for decades before skin issues flare. Lucky me. If you want to compare notes drop me a line.

  • LittleMissPixie
    LittleMissPixie April 9, 2013 at 12:08 am   

    ireplying was a ballerina from ages 2 1/2 until 26. I assumed the lumps and sausagification of my toes, which began at age 12, we're simply a side effect of dance. Who ever heard of a ballerina with pretty feet, after all.
    Turns out it was psoriatic arthritis, untreated in any way for 15 years. The damage is pretty brutal, and every biological medication sends my psoriasis into overdrive. Physical therapy helps. My husband's support helps. My cane helps. Yep, 30, over 2 decades of dance, and I'm on a cane.
    I don't know why I don't give up. I don't think anyone should, and not for religious or moral reasons, but in the hopes that genetic research will find a CURE for us, not just treatments that often make things worse instead of better.

  • SuSewSew
    SuSewSew March 31, 2014 at 2:53 am   

    Check the comment above. Re the feet thing…I was the joke in the family with my ugly toes. Orthoped surgeon asked how long I had been dancing?! Haha Had the surgery with pins in my toes of left foot (the worst side) but after 2 years they are go back and the pain is bad. I have used a cane periodically from age 28 until I went on Remicade. I have had "RA" for 27 years which is 1/2 my life (I am 55). The Remicade was okay for 8 of the 10 years I used it but since it no longer was working my RA dr wanted to reclassify so I could get a different med. While on the hunt through old files from other drs he discovered I had PA not RA. I have ALL the symptoms in the past few years.

    I was a divorced working mom of a toddler when first diagnosed. I did not have time to think about what it meant as I was the sole support of myself and child. I worked two jobs till my health forced me to stop at age 40. No family support (financial or emotional) so it was a very tough time. I met a wonderful man when I was 45 and we have been together for the past 10 years. I am blessed to know him. Having someone you can talk to is essential.

    If you would like to write and discuss anything feel free to do so. Hope you are doing well.

  • lyndac6
    lyndac6 January 24, 2013 at 11:20 am   

    I was recently diagnosed with psoriatic arthritis, unfortunately I have been dealing with it for more that 9 years was first diagnosed with rheumatoid and fibromyalgia which they say I still have. the swelling in my hands and pain is incredibly bad and that doesn't even include the hips feet and elbows. I currently take methotrexate and Enbrel which have finally cleared up the lesions but dark spots still there but the pain though it is much better it is still constant and daily. I just don't know what to do anymore. I just want to give up.

  • SuSewSew
    SuSewSew March 31, 2014 at 3:11 am   

    Boy do I know how you feel. Read the above comments and you will understand why. Up until three weeks ago I was told I had all of the following: Rheumatoid, Fibromyalgia, Reynaud's, OsteoArthritis, Osteoporosis, Uveitis. All at the same time.

    I used to journal though not since having a hubby I can tell anything to. It is essential to maintain as positive an attitude as possible. Check out the Arthritis Society in your area and whether they offer a Self-Management Program. It was hugely helpful for me. So much so that I taught the courses for 10 years, gave workshops to train-the-trainer and was a speaker at conferences with doctors and other healthcare professionals.

    Some of the other things: watching comedies (tv & DVDs), getting books on tape when I could not hold a book or turn pages easily, earbud for music so I could distract from the pain when trying to fall asleep.

    Hope some of this helps you and that you are feeling better about things. If you feel up to it, let me know. Hang in there.

  • lyndac6
    lyndac6 March 31, 2014 at 2:14 pm   
    Edited March 31, 2014 at 2:16 pm by lyndac6

    Well since my last comment things have gone from bad to worse. Enbrel didn't work. I went into a remission per say over the summer months. Once I obtained insurance again went back to Rheumatologist due to the swelling and horrible pain. She then tried Humira nope didn't work. So now I am on remicade which I have been on since January with very little to no change. I no longer work, and have applied for disability. And still in constant pain my hand are better because I am not on the computer 8 hours a day, but my neck, lower and now upper back are in excruciating pain. Even if the Remicade does work for the psoriatic arthritis, it isn't going to work on the spinal stenosis in my neck, the degenerative disc disease through y whole spine now. I am just not liking the course my body is taking and don't know what to do about it.

  • SuSewSew
    SuSewSew April 2, 2014 at 11:21 am   

    Hey there Lynda!
    Remicade was what I was on for 10 years though the past 3 were not great. That was while we were still thinking I had RA. Switched to Humira and that was disastrous as it did nothing and I had to wait three months before going back on the Remicade.

    Initially I was getting the Remicade once every 8 weeks then over the years we got it down to once every 4 weeks. It did take 2-3 times before I noticed a difference which was the reduction in pain. I had to go on disability at age 39.

    Recently my back, lower right side, is super painful. I have been doing a gentle stretch while lying on the bed and that seems to help. I had a Bone Density scan last week which showed the past 10 years of calcium meds have put me back in the "okay" range though the spine was degenerated forcing them to test the femur.

    Do you have custom medical orthotics for your feet or custom splint(s) for your wrists? I have both. The right wrist eventually seized up on it's own but until it did was excruciating. It's a leather wrist splint with steel shaft so it is very supportive. When wrist flares I wear it constantly.

    Be kind to yourself, if you are not already. Watch comedies, join a choir or some group that you enjoy as it is a distraction. I am in a choir and quilt. I have a large sewing studio which allows me to escape and do the odd job for others. Let me know how you are doing.

    Suzanne

  • slats1965
    slats1965 February 22, 2012 at 12:30 pm   

    I have taken Embrel,Remicaid,now humira i have taken all 3 of these meds untill they stop working or the arth got to bad.Right now i hurt so much my hands hurt an elbows knees.i am just down in the dumps and so tired.

  • slats1965
    slats1965 December 18, 2011 at 12:46 pm   

    I also have found that it flairs up at times and realy makes my fingers swell and knees hurt,almost to thinking about replacing my right leg knee.Was told when i was 30 that knee was in bad shape i said lets replace it but was told i was not old enought to have it done now at 49 i am back to thinking about it. I have lost lots of flexabilty an not sure about the pain to do that.

  • slats1965
    slats1965 December 16, 2011 at 6:59 pm   

    I have had Psoriatic arth for years most of it show up on my nuckles and ears, hair line.I am also got arthritis in both knees and many joints hand elbows shoulders plus ankylosisspondylsis in my spine.I have learned to try to keep up my spirits,and stay on top of pain.

  • lilmellie
    lilmellie December 20, 2011 at 2:38 am   

    I had to look up ankylosisspondylsis up in my medical dicitionary because I have never heard it before. When I was looking up ankylosiing spondylitis I wondered if too have this as well because I have the same problems as well. I'll have to bring this up to my dr.