Fired by my rheumatologist
Hi guys,
So I have been working with a rheumatologist for over 3 years now. We tried Embrel then Humira (which worked for a while until I started getting swelling in my ankles). 2 orthopedists confirmed excess fluid in joint due to disease activity. We switched to Xeljanz and I had the worst flare I have ever had over the summer. My knees were so swollen and stiff I could barely walk. Needless to say I was constantly calling my Rheumatologist office to get a medication change. In between I went back on Humira for 3 weeks and was getting some relief. In September I started Inflectra infusions and slowly to now I have gotten worse again. Prednisone does not seem to help. I went into my rheumatologist office today and she basically said she is confused that Steroids don’t work and she handed me a pamphlet about Fibromyalgia and asked if I had tried Deluxitine (which I had and it didn’t help). She invited me to find care somewhere else and basically showed me the door. I have never felt so discounted… like this pain was all emotional and mental. Where do I go from here?!?! Please someone tell me I’m not crazy.
I have been there. I have been exactly where you are. When I was 17, my parented DARED to get a second opinion at the Mayo Clinic. When my rheumatologist found out, not only did he “invite us to move on,” but the Mayo Clinic doctor even recanted and said he was wrong in all he said. It was a huge blow and taught us a valuable lesson. Doctors are people, with egos and human failings, just like we are. It sounds like your rheumatologist just isn’t the kind of person who likes to be questioned or wants to deal with complicated cases. I was a complicated case and we eventually found a doctor who was OK with that and although it took 20 years, he never gave up and found a medicine that worked. I know it feels awful now and I totally get it, but, unfortunately, it’s time to start that search for a new rheumatologist again because, frankly, taking prednisone is no long term solution even if it worked. Let us know if there’s anything we can do to help and remember - you are not alone. Keep on keepin’ on, DPM
Thank you so much for your support Daniel! I am glad you found a doctor who listens ❤️
Hi
. My wife, Kelly Mack (a contributor here), was, like Daniel, diagnosed very young. Kelly had a rheumatologist basically tell her that her case was too tough and he didn't know what to do for her. At least in Kelly's case it was before most of the modern treatments existed. Your story is even more frustrating because there are now quite a few options and it sounds like the doctor is giving up because they don't want to put in the hard/continuing work.
The good news is that now you know. It obviously is bad now, but you deserve a doctor who will listen and put you first. Best, Richard (RheumatoidArthritis.net Team)
, your word "discounted" captures the feeling perfectly. I agree with . Some doctors are all ego and can't think outside the boxes they like to check off. And shame on us if we don't fit. Its a horrible feeling.
I have had an arrogant rheumatologist. His treatment of me and my disease sent me in search of a better doctor. I found one. He is kind, knowledgeable and responsive. I have been hard to treat in terms of active disease in spite of numerous treatments so he suggested a 2nd opinion. He wanted to insure that he wasn't missing anything.
I am hoping for just such a rheumatologist for you.
oh I'm so very thankful that you have a new rheumatologist who is kind, knowledgeable, and responsive! Everyone should have such a wonderful rheumatologist in their corner!! -- Warmly, Christine (Team Member)
You're definitely not crazy! To be invited to find care elsewhere is such an insensitive thing. I'm so sorry you had to experience feeling thrown away by a trusted provider who should never put a patient in the place of feeling alone and abandoned. Finding a new RA doctor will take some work, but it's all in good faith to lead you to someone who is truly there to help you through the ups and downs of your journey. I want to share with you an article that gives some tips on how to be selective about choosing a doctor, https://rheumatoidarthritis.net/living/tips-choosing-new-doctor. Here is another article that talks about seeing a pain specialist who could be another option outside of seeing a Rheumatologist - https://rheumatoidarthritis.net/living/pain-management-specialist. The good thing is that you have options. But that doesn't make the task any easier. You deserve the utmost care and security to aid you through all this. I truly hope you reach a solution soon and we get a follow-up of a success story from you. Stay encouraged, Latoya (Team Member)
