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In search of top notch rheumatologists

My husband is 54 and has RA (approx 7 yrs) and chronic lung disease from birth. His rheumy tried all treatments he can safely take with no improvements at all. He tried pills, infusions, and shots. Husband waited over a year to be seen by Johns Hopkins rheumy but appt was cancelled since doc does not have license to do telehealth appts in VA. We live in Richmond. Now we are back to square 1. We are willing to travel anywhere to see a top notch rhuemy on the East and Midwest part of the country, including Mayo Clinic who treat difficult cases.

  1. , ugh! I am so sorry your husband had that appointment cancelled! I do hope you get some helpful feedback from other community members that might be able to offer some suggestions. I know many people find the Mayo Clinic to be a great place to go, but you may be able to find a great rheumatologist much closer to your neck of the woods. Some of our members have used the Cleveland Clinic -- You can use this tool to at least get an idea of who is practicing in/near your area, but I realize it won't give you any insider info like a personal recommendation will --

    I am sorry you are back at square one and I hope these resources give you at least an idea of what's out there for your husband!

    Best, Erin, Team Member.

    1. Hi . Sorry your husband is having these problems finding a rheumatologist. On top of the excellent information from Erin, I want to share with you that my wife, Kelly Mack (a contributor here), has been very happy with the care she has received at George Washington University to your north in DC. She wrote here about how her rheumatologist consistently looks out for her overall wellness: (also want to note that Kelly is considered a particularly difficult case having been diagnosed at two, over 40 years ago and using a wheelchair since her teens). Of course, there are no guarantees on what doctor a new patient would see and everyone's experience is different, but thought I'd share the information. Kelly is actually right here noting that your husband should not hesitate to "audition" different doctors until he finds the right fit for him. Of course, we know that with the scarcity of rheumatologists this can be easier said than done. Hoping he has some success soon in finding a doctor and please feel free to keep us posted. Best, Richard ( Team)

      1. Thank you Richard. I will fill everyone in on what develops for my husband's care.

        1. I have lived with RA since I was 4 yrs old, I am now 67, In pain daily, I have lung problems, so I can't take any medications for RA, they all cause difficulty breathing I am on Oxygen 24/7. When I was 22 I had Gold shot injections, which worked great for 10 years, when I was 25 was in remission for 2 years (pain level was 2), until they stop making the drug. My RA went bad again. Because the immune system is always attacking your body with infections, I am now on Gamagard infusions every 3 weeks, which helps the immune system. For the RA I take prednisone (since 1980), and A dietary supplement (Nuvolflex) and Nitric Oxide which helps greatly in my hands and feet. This works in less than 3 hrs, with this I can now make a fist. I worked for 25 years and retired in 2005. I learn early to buy only clothes and shoes that pull/off, no tie shoes. Right now I only wear Skechers slip on mules. Am on a rolling walker and have a bed and bath bars, and a bar at the back door to make it easier to come in/out of the house. I drive a fully loaded car, to make driving easier and safer. I have a Black Label car, which I never to take in for service, they come and get it an leave a loader in case I need to go anywhere. I have has handicap plates and a sign for meter free parking. Living with RA for 63 years, I have never had a normal life. Because I have always been in pain, I had felt like a 70 year old all my life.

          1. Hi, ! I'm so glad you took the time to share a part of your Rheumatoid Arthritis journey with the community.

            I am sorry you are dealing with regular pain and are unable to take typical RA medications to manage it. I am glad you have found other treatments that do help! That said, I am so sorry you have lived the majority of your life with chronic pain. That's definitely not easy.

            Thank you for sharing!

            Best, Erin, Team member.

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