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Is It Time to Move On?

I've been seeing a rheumatology PA since 2018. I've had pain for 13 years and originally thought I had fibromyalgia. My PCP finally referred me to rheumatology in 2018 and that's when I found out I had PsA. I've tried many, many different meds - ibuprofen, naproxen, cyclobenzaprine, duloxetine, tramadol (helps some), prednisone (only thing that has really worked well), and 4 different DMARDS, 5 different biologics, and Rinvoq (kind of helped?) and now a trial of Xeljanz in an attempt to get my insurance to cover it if it works. I mostly have enthesitis and very little to no psoriasis. Occasional joint pain, extreme pain in my feet. I've gotten really frustrated in the last year or so with the lack of progress, distressing loss of function (I can't even walk my dog anymore or complete all my household chores every week), and having so little response to anything. It seems that something usually works for at least a while for most people. I've sometimes wondered if I've been misdiagnosed or if there is something else going on in addition to PsA. My PA has a great reputation and I've always liked and trusted her, but I've noticed little things lately that make me think she's getting frustrated with my lack of progress too and/or blaming me for it. I am not a demanding patient or someone who complains a lot. In fact, I'm the kind of person who will stay in a situation longer than I probably should because I don't want to rock the boat and hate conflict. I do ask questions though, research options, and won't agree to just any treatment if I have a good reason not to. She wanted to try infusions recently and I just don't have the time to take off work to do that. After a bad flare a few weeks ago following a cold, and no response from her office after reaching out several times asking for a temporary increase in prednisone, I researched some pain management specialists in the area thinking I could get a different take on how to deal with the pain, whether by trying other pain meds in combination with an exercise plan, or referral to PT, or cortisone shots in my feet. Any number of things she hasn't mentioned or tried. Her sole focus has been to find a medication that will impede the autoimmune process. I know there are a lot of medicines to try and it is largely trial and error, but at this point I've tried so many different meds I don't think that's in the cards for me. When I left a message asking for a referral to a pain specialist today, the response I got was less than compassionate. I felt like I was being accused of doctor shopping or just seeking pain meds. This made me feel terrible. I really just want to improve my functioning and feel better. I would hope that would be her goal for me too, even if it meant bringing in opinions from other medical specialties. Now I'm wondering if I should be seeking not just a pain management specialist, but a new rheumatologist too. Is it time to move on?

  1. Hi , first of all, I want to say, I am so sorry and sad to hear about your experience. You are definitely not alone, but it is still so discouraging when a good relationship with a doctor turns disappointing. I really wish that your experience was different, although I know so many people in the community here would be able to tell you they had similar reactions when asking about pain management. I think it's a fair question to be considering whether or not this doctor is still a good fit, but of course, only you can decide if it's time to move on or not. Hopefully you can get some helpful feedback from others in the community here. That being said, I did want to share this article with you that one of our advocates put together about not being afraid to seek out a new rheumatologist, https://psoriatic-arthritis.com/living/afraid-new-rheumatologist.

    Also, I just want to say, good for you! It can be incredibly hard, and I really applaud you for all that you're doing to take care of and advocate for yourself. It sounds like you are a very active patient, seeking out information and asking questions. And asking for a pain management referral is certainly not something you should be made to feel terrible about. For a lot of people with a chronic condition, a pain management specialist is a really helpful addition to a healthcare team.

    I really hope other community members here can share their thoughts and feelings with you. And please know, you are not alone!

    Sending you gentle hugs. -- Warmly, Christine (Team Member)

    1. Hi sounds like you have gone through a lot. If you are thinking it is time to move on, then it probably is. A doctor should want the best for you. So many times, we in this community are accused of seeking pain meds. I wish we could have them switch bodies with us for 30 minutes and then tell us that. You absolutely have the right to question things when you do not feel it is right. With time living this disease comes wisdom that the doctors do not have in the medical books. Please take care of you. You have to be your own advocate. Let us know how it goes and please know we are here to support you. Vickie, Team Member

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