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Taking PsA seriously

I talking with a friend, she suffers with rheumatoid arthritis and when I told her that I have PsA, she told me "that PsA is worse than Rheumatoid." I never in a million years thought I would hear anyone say that.

Lord knows I wish my Rheumatologist would take my case more serious than he actually does; especially since I have PsA with mutilans.

My pinky finger on my right hand is very crooked, I can't straighten it out and not my toes on my left foot are beginning to curl under. They all stay swollen and painful to the touch.

My Rheumatologist is the one who diagnosed me, but acts like my suffering is no big deal and when you have Fibromyalgia on top of that, the two are almost too much to bear.

  1. Hi . I hope you will consider finding a new rheumatologist. There are simple surgeries that can release curled fingers and toes, and those should at least have been discussed as options. Some people also find that steroid shots help. Are you taking any medications to control your progression? I hate to compare illnesses because it can easily become a competition and there is no benefit to it. Those comparisons often lead to hard feelings, especially since each individual journey is different for both diseases. However, I moderate in both communities and it seems more people with PsA struggle to find effective medications. That can happen with RA as well, but anecdotally, it seems more common in the PsA community. That difference might also be due to the culture of the specific community. It is hard to say. I hope you do find someone new who can truly be a partner in your care. Wishing the best. - Lori (Team Member)

    1. So sorry to hear about your experience with your specialist. This is just not good enough! I hope you have the opportunity to find a specialist who takes your condition seriously. I feel so fortunate that even though my condition is not as advanced as you describe, my specialist takes the view that we are trying to avoid that progression and we continue to try different treatments to find what works best for me. It is so important to me that my doctors are "on my side".
      I have previously experienced the kind of attitude you describe with chronic skin conditions (now I know they are forms of psoriasis!!) and it just made me feel so much worse. I would often leave doctors' rooms feeling completely unheard ("this is in your head" type messages) and in tears. As a result of the string of bad experiences I avoided seeking treatment for many years to my own detriment! I am thankful to have found my "team" now and I hope you will be able to find the empathetic care you need. Best wishes.

      1. It really sucks, I have had this specialist for over five years. I was so relieved when he was able to figure out what I already knew I had, but kept my suspicion to myself. I wish when I had showed him how much worse my finger had deformed and now my toes, he just doesn't react in any way, shape or form. He just basically blows me off and says "see you in six months."
        I'm so stressed out, because at this point I could be partially crippled in the next six months. There aren't many choices in my neck of the woods and I won't drive to big cities.
        Damned if I do, damned if I don't.
        Thank you for your kind words and support, it means a lot to me.

        1. I recommend the drive… trialed 3 rheumatologists before I found mine. He’s brilliant and now looks after my 23 & 18 year old daughters who are diagnosed, thankfully because I’ve done the incredibly hard work and investigating my own symptoms to basically force X-rays & bloods and come up with Hla-B27, ANk spon & PsA with fibromyalgia. You know yourself…. Force the outcome. I did after years of being told my pain is in my head, prescribed anti-depressants but god I loved it when they called me three days after I made my GP test me for the gene. He was humble and sent me straight to a specialist. The damage was done unfortunately but I’m happy as now my daughters don’t have to go through those years of misbelief. It’s your disease after all. You decide how you want to manage it.. find a better specialist.

          1. Hi @ElsieJo79 it's sad that you had to force it but I am so pleased to hear you got the answers you were looking for. You gave perfect advice. We have to be our own advocates. Happy to that you can help your daughters as well. Have they put you on something that helps now? Vickie W., Team Member

          2. Hey Vickie. On my 4th biologic and it’s working. No more leuflonomide, no Rinvoq which gave me terrible side effects, only take Prednisone during a flare, and Amiltriptiline & CBD for pain. Am severe at 43 now which sucks but if it wasn’t for those 12 years of misbelief I swear I wouldn’t be half as bad. Costenyx is helping. Daughter is straight to biologics as my Rheumatologist doesn’t want the same outcome for her disease.

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