Keeper or Loser: I’m Not Giving Up, But What Do You Think?

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Warning: this is one of those rare personal posts specifically about my life, but I thought it was relevant to share.

hot wings signWe have two endearing names for rheumatologists which I’ve coined over the years: rheum doc and The Wizard. Rheumatologists are the doctors who decide not to sneak out Osler’s infamous back door. I always give them credit for that: historically, they’ve been given some of the most “hopeless” cases in many ways with very few effective tools to make a difference. Fortunately that’s beginning to improve for a percentage of rheumatology patients.

I haven’t mentioned going off to see The Wizard recently and many of my readers know why: I’m in need of a new rheum doc myself. Last spring, we lost Dr. Smart in the disgraceful bone scan debacle. Last summer, I called several offices asking basic questions about insurance or whether they frequently treat RA. While both daughters were home to escort me, we visited an office where the woman had answered all the questions well. The doctor was even a member of the ACR, but he turned out to be the one we named Dr. Perv. His dismissive manner and beliefs were extremely similar to the rheumatologists I met in 2009 and to what other patients often describe, with the exception of the assault of course.

You can imagine why I waited a little while to try again. Later in the summer, I found a clinical trial only a couple of hours from home so that I could try one more treatment (Rituxan) instead of “just wait for something to be approved” which was what Dr. Smart had instructed me to do one year ago when the doctor ended the Actemra saying it cost the office too much money.

In this clinical trial, I’ve realized there is no rheumatology care or exams. The nurses take my vital signs and do a pregnancy test each time I come in. So, while I do get a treatment – Rituxan – I still don’t have rheumatology care – the kinds of things we talk about here like monitoring disease activity or treating to target.

We finally visited a new rheumatologist today. Here’s a partial list of what the rheumatologist said:

  1. Doc asked how long “morning stiffness” is, but when I said I’m always stiff, looked surprised and repeated the question 2 different ways.
  2. “I don’t know whether the previous treatments actually did not work on you since I did not see you and examine you myself.”
  3. Doc asked about 10 times whether I have swelling, even though I answered specifically and affirmatively every time.
  4. Doc spent several minutes examining hands and did not look at shoulders. Less than 30 seconds on knees. I had not mentioned hands, but said knees and shoulders are the worst right now. (My hands are getting worse and are always painful – they just don’t look bad most days – so I don’t mention them.)
  5. Doc said to continue to take a full year of Rituxan treatments even if I they don’t help symptoms. “It is still removing the dangerous cells that could cause damage from the disease.”
  6. After the Rituxan, doc said I should try Simponi and Cimzia. Said “some of them do work by the same mechanism as the Humira and Enbrel” which didn’t really work, but that’s okay.
  7. After discussion of every medication on my list and every previous RA treatment, doc asked: “Have you tried Tylenol Arthritis?” I sat dumbfounded. When it was repeated, I asked “For my RA?” Then, “Yes, Tylenol.”
  8. Doc asked more than once about how activity could make my joints more sore instead of less sore. “You mean it gets better through the day, right?” “No, it gets worse.”
  9. When doc asked about previous imaging, I mentioned the nuclear bone scan results, but was interrupted twice to say I must have been confused about a DEXA scan. I continued to try to state that the scan showed inflammation. Doc said, “It showed inflammation?”
  10. As follow up, doc ordered CRP and ESR, not anti-CCP or any other antibody.
  11. Doc said to come back in 2 months. Nothing is to be done about my unusable joints such as knees which don’t straighten and have 2 year-old Baker’s cysts.

Several friends have asked for details, so I made this list. It’s a hard decision whether to publish it because the whole thing made me feel lonely and discouraged. My knees were in so much pain as they had to hang there off the table during the whole appointment. I could barely walk out of there and they acted like I was fine. Maybe we hoped for more up-to-date knowledge in a newly-minted rheum doc. I admit my expectations are pretty low at this point and I’ll wait to see the chart notes after my usually normal CRP and ESR come in.

The sad part for me is my joints are worse than ever and there are always more things that I can’t do. The Rituxan hasn’t helped at all and I’ve heard the world’s top docs say that treatment should be adjusted every three months if a patient is not “controlled” or in remission. But I’m supposed to just leave my knees (and shoulders, and all my other inflamed joints) like this indefinitely and take a whole year of doses of Rituxan and then go back on another TNF? Really? I’m not sure what choice I have, but I hope I figure out something.

Postblog: I’m really sorry I couldn’t think of anything funny to put in this post. As an antidote maybe you’ll want to see this funny post or this one to remind us how we help each other. Special thanks to Shannon, Bob, Dee, Sandie, and David for so much support yesterday.

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Kelly Young. All rights reserved.

This entry was posted on Saturday, December 17th, 2011 at 11:30 am and is filed under Reality Check. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.

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