How can I work with a new doctor?

Prior to my doctor’s retirement (short version anyway) I was receiving IVIG, and a pretty good pain management routine. Now his replacement states that I have Fibromyalgia, do not need any pain medications, and IVIG (every 4 weeks IV therapy infusion) is too expensive to receive when I don’t really need it. He stated he knows nothing about it and referred me to an Immunologist. Per the Immunologist instructions I’ve stopped IVIG in April and I’ve had major flare ups since and BAD fatigue. Well, I’m told by my new RA that the fatigue is Fibromyalgia. Let me be clear that my recent wrist/hand flare was EXACTLY how it all started up 10 years ago. BAD wrist pain, so much so, I thought I broke my wrist until after a few days it moved into my other wrist. Back 10 years ago I was referred to a hand specialist who ruled out everything from Carpal Tunnel to over-use. Finally, after much pain back and forth in my wrists, I was diagnosed with RA and began seeing a great Rheumatologist. He treated me and I was doing pretty darn good., not GREAT but holding my own without any MAJOR flares. My new RA says the past is the past. I was able to see him when my left wrist flared recently (which was very red, swollen, hot, sore). He sent me for bloodwork, and x-rays. Bloodwork looked good I’m told my RA factor was 124 out of a 1-12 range hmmm? To brief…. I had x-rays back in March and everything looked normal (I’m told) for a person with RA. These past x-rays from 5 days ago show Scapholunate Ligament disruption in both my wrists/hands the left being the worst. (based on “google” it is from a fall where you land or stop land with your hands or a sport injury) Anyway….I don’t understand how this could come on so suddenly, (no I didn’t fall or over-work myself) started in my right, lasted a few days then after 1 week went to my left wrist with force. Anyway, my NEW RA is now referring me to a hand surgeon. He states my RA is fully under control…. Guys…what do make of these? Anyone? I am taking Xeljanz and have been for the past 2 years. I feel like I am going crazy here. Help? Any advice?


Community Answers
  • Patricia Darstein author
    1 year ago

    Thank you both so much for you imput and advice. I do not know where to turn to. We are so limited in Buffalo, NY as far as finding quality RA care. There are very few doctors, most not accepting any new patients and Doctors that are accepting have an 8 month waiting list.

  • Patricia Darstein author
    1 year ago

    Thank you. I get the “wrist” is complex but what concerns me is that 10 years ago and pretty much consistantly my RA only tends to really significantly flare in my hands and wrists. That is why given the history, this to me (and based on the fact that we discontinued IVIG treatments 3 months ago), I just believe this is a typical RA flare for me not an injury from a fall.

  • Richard Faust moderator
    1 year ago

    Hi Patricia. Erin is absolutely correct – no one will look out for you like you. You are always entitled to a second opinion. On top of the great information from Erin, I thought you might be interested in this article from one of our contributors doing a series on things she would like to tell her newly diagnosed self. This one focuses on finding a rheumatologist you trust: https://rheumatoidarthritis.net/living/no-3-find-a-rheumatologist-you-trust/.

    Concerning your wrist, you might be interested in this article from our editorial team on wrist pain: https://rheumatoidarthritis.net/symptoms/wrist-pain/.

    If you do decide to consult with the surgeon, this article on wrist surgery may provide some information to prepare you for that meeting (information is power).

    Hope this information proves useful. Know that you are always welcome here to seek information and support. Keep us posted on how it goes. Best, Richard (RheumatoidArthritis.net Team)

  • Erin Rush moderator
    1 year ago

    Hi Patricia! I am sorry you are dealing with this. While I cannot provide medical advice, for your safety, I will tell you what I have told many of our members; no one knows your body like you do. If you feel that something is wrong, then you are well within your rights to seek a second opinion. I realize that insurance issues may make seeking a second opinion difficult, but for your peace of mind, it still may be worth the time and effort. You may want to check out this article on deciding if your doctor is the right one for you — https://rheumatoidarthritis.net/living/dumping-doctor/comment-page-1/#comments. You may also want to talk to that surgeon. He or she may be a potential source for a referral to a new rheumatologist or at least a second opinion as to what is going on with your hands and wrists. If you are able to seek out a new rheumatologist, you may find this information helpful when meeting with potential new doctors — https://rheumatoidarthritis.net/living/choosing-doctor-2/comment-page-1/#comments. Best of luck and I hope you get some relief (and answers!) very soon. Best, Erin, RheumatoidArthritis.net Team Member.

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