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How did you know it was time to change your rheumatologist?

Sometimes, our relationship with our rheumatologist just isn't working out (as David explains in his article -

How did YOU know when it was time for a different rheumatologist?

  1. I have changed rheumatologists twice (technically 3 times but the second one doesn't count because my rheumy had moved and they referred me to someone else in the adjoining office). The very first time I had changed I knew it was time because the rheumatologist was not listening to my needs, my struggles, my symptoms. I would tell her X,Y,Z hurt and she would say "there is no way this should hurt - your blood work is all normal". She would breeze through appointment badgering me the whole time about how there is no possible way I could be in pain because if I were, my blood work would reflect it. I knew at that moment that I needed to meet with someone who was willing to look beyond bloodwork. I went on the hunt for a new Dr. I stumbled across Dr. H who was purely amazing- The best rheumatologist one could ask for. I stayed with her for several years until she moved and I was referred to another Dr in the same network. Dr. H moved to Iowa (what a lucky state to have her! If you live in Iowa and have RA, I am officially jealous. She seriously is the best).
    The Dr. They referred me to didn't see eye to eye with me on many issues. He would say that rheumatoid arthritis did not involve the sternum, tissues, tendons, or ligaments and that if I were having involvement of that kind then I simply needed to see a different doctor for a different set of issues. I was perplexed because I had at one point been in a drug induced remission with Orencia where all symptoms, including tenond/ligament, nearly vanished completely. So I knew there was a connection there but he was not willing to hear me out. It was then I decided to locate a new rheumatologist. I now see the same one that my mother sees. So he is at least familiar with my family history. So far he seems to listen to me and we are able to make decisions together regarding treatment- which is a huge positive for me!

    You are right - sometimes the relationship just doesn't work out. I am sure the doctors I have seen in the past have been able to help lots of RA patients, they just weren't the right doctors for me. Even though finding someone new can be very stressful I do think it is worth it to keep trying to find someone who can form a good dr patient relationship with 😀

    1. , thanks for taking the time to share your journey through various RA doctors' care. I am sorry you had to lose such an awesome doc and I hope this latest one continues to be a good fit for you. I think people may not always realize how much a good (or not so good) doctor can truly affect your health and well being. Having a doctor who listens to you and partners with you to find the best treatment fit for you is awesome. And having the opposite can be downright brutal.

      Thanks again for sharing!

      Best, Erin, Team Member.

  2. Very recently, I changed rheumatologists because the doctor did not respond to my telephone calls, of a very serious nature. In fact, I called three times and received no reply. I am a person who doesn't call my doctors unless severe pain or an emergency is involved. I am satisfied with my regularly-scheduled appointments to discuss my RA. Additionally, for the past two years, I have felt the rheumatologist was just going through the motions. For these reasons, I made a change and am so happy I did. It was not easy because of record, insurance, and medication transfers. But, it was worth the inconvenience and starting over, so to speak. My new rheumatologist listens and gives me options. I feel as though it's a partnership and we're working together. I have a new sense of peace of mind. It was more than worth it to make the change.

    1. Oh man, we're so sorry to hear you had to go through that process of finding a new doctor but we're so glad that you found one that sounds like they are working out so nicely for you! It's never an easy process but when you finally find the doctor that works for you, it's priceless! I'm so happy to hear you have peace of mind and more importantly, that you feel like it's a true partnership, which it should be. Thank you so much for sharing this with us! Sending you lots of love! ๐Ÿ’œ Kayleigh, team member

  3. Before I retired I worked exclusively for non-profit agencies. Every year or so they would switch to a different health insurance plan because of costs. This usually meant that I had to start over with new doctors. I went through 5 different rheumatologists and each one gave me a different diagnosis. Psoriatic arthritis, sjogrens syndrome, CFS, RA, Fibromyalgia.
    My 6th Rheum Dr did the most extensive workup I've ever received and she said it was definitely RA. By then I'd tried (and failed) with all the available medications. She said the only thing she could do for me was to start me on biologics. I said I wasn't ready (financially or emotionally) for that. She said come back when you are. She was pleasantly professional but emotionally distant. I've not been back, so right now I do not have a rheumy doc. I just don't have a lot of faith in them at this point.

    1. I refused to take Xiljanz and had my doctor refuse to treat me.

    2. Wow. I hope you found another doctor, . Thinking of you. - Lori (Team Member)

  4. Most definitely switch rheumatologists when you feel unheard. I can recall my dad being at the hospital for heart surgery and the surgeon's affair with one of the nurses made for some soap opera-like drama IN dad's room. It made my dad so uncomfortable and; with that being said; if your doc is distracted with his life, instructing a student, or with the man in the moon; IT TAKES AWAY FROM THE CARE YOU'RE RECEIVING.
    Physicians are human and that is a two-edged sword. They have real lives and they are prone to mistakes. You have every right to do what is within your best interests. Find you a rheumatologist that cares about the patient. Anything less is not acceptable.

    1. Wow, my jaw dropped reading this comment. I can't even imagine what that must have been like to be there for your father and having to watch all that drama unfold. Your poor father. My heart broke reading that he was so uncomfortable from it. You're so right when you said that doctors are humans. I think we forget that sometimes. Thank you for sharing this and being an advocate for finding a doctor that works for you. I'm really glad you're in this community with us . Lots of love, Kayleigh ๐Ÿ’œ

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