A letter to my doctor – standing up for myself for trying to treat my fatigue

You may have read my reaction to my latest rheumatology appointment.  When I was told the treatment that my doctor had been talking about for 7 months had all of the sudden become “unwarranted” in his mind.

I’m still not through my “I have to get through these three weeks before I can process what’s happening with all of this” period – it’s Thursday and I have to make it to the end of the baseball tournament this weekend (either Sat night or Sun) before I can pause, breath, process, determine a plan for what to do next.

I was barely hanging on – managing to get through the minimum I needed to get through.  And then last night I walked into the kitchen after a 10.5 hour day of traveling and work before I went to an 8pm baseball game for my son – and I opened a letter from KU Med that was sitting on my counter.

I was livid.  I was appalled.  I was hurt.  I was crushed.  I was outraged. And I had to fight back the tears, get in the car and go to the baseball diamonds.  The game did help take my mind off of it for an hour and a half (I LOVE watching my son’s team play ball!) but as soon as it was over it all came crashing back over me like a wave.

And after sleeping on it overnight, below is my response – a letter I wrote (and sent) to my rheumatologist (“Dr. C” as I’ve referred to him as throughout this blog):

---

“Dr. C,”

I have never in my life questioned what a doctor said.  I’ve never written to a doctor.  I’ve always been a “good patient” and never in any way confronted something that I felt wasn’t right.  I say that only to let you know how strongly I must be feeling to write this letter.  The first portion discusses my reaction to my latest appointment while the second portion discusses the information I’ve gathered relevant to treating Sjogrens with Rituxan.

I received my copy of the visit letter from my last appointment sent to my new primary care doctor today.  I was absolutely appalled to see that you insinuated that I was depressed and that was the cause of my chronic fatigue. Sjogren’s, the disease for which you confirmed my diagnosis, is well documented in the medical literature as having chronic fatigue as one of its most debilitating symptoms.  (I have read many such articles – such as Segal et al. in 2008 Arthritis Rheumatology entitled “Prevalence, Severity and Predictors of Fatigue in Sjogren’s Syndrome” – they found “Abnormal fatigue defined as a FSS score of greater than or equal to 4 was present in 67% of the patients.” Or Ng and Bowman in the 2010 Rheumatology article: “Chronic fatigue is one of the most prevalent and debilitating symptoms in primary SS (pSS). Approximately 70% of pSS patients suffer from disabling fatigue, which is associated with reduced health-related quality of life.”)

The reason that I was “very tearful” and “left the room” has zero to do with depression.  I see a therapist regularly as I deal with the issues that having a chronic, invisible illness causes in a young person’s life and she would be more than willing to confirm that my fatigue is not caused by depression.  I actually have a very high level of motivation and desire to continue my work and activities but am physically unable to do so.  That is not characteristic of depression-caused fatigue but is actually in line with the fatigue as documented in the Sjogren’s medical literature. (For example, Gadaert et al. showed in a 2002 Annals of the New York Academy of Sciences that “[Sjogrens patients and healthy participants] did not differ with respect to average levels of reduced motivation or mental fatigue. Both general and physical fatigue and reduced activity varied significantly during the day.” Or the Segal paper that found “While fatigue is associated with depression, depression is not the primary cause of fatigue in Primary Sjogren’s Syndrome.”)

The reason that I was upset was because of the 180-degree change that you’d made in my treatment plan.  From the first visit with you, seven months ago, you discussed Rituxan.  I had not previously looked into the treatment.  You indicated that you would look at the literature and we would discuss it at my second appointment.  From that second appointment forward, each and every appointment including you indicating that Rituxan treatment was where we were headed but that you wanted to do various testing, send me to other places, etc., to rule out other causes of my symptoms.

In fact, at my last appointment, in February of 2014, you specifically told me that you would order the Rituxan treatment no matter what the results of the biopsy, but that you wanted to wait until the biopsy results were back before doing so.  You even explained to me the process – that once you ordered it, the insurance would need to approve it and then the infusion treatment center would be pretty quick about getting me in – I believe you said I would be in about a week after the approval went through.  That appointment left no doubt in my mind that you had every intention of ordering Rituxan – as you specifically said – no matter the result of my biopsy.

To come back 3 months later (and get biopsy results from you that I’m hearing for the first time because apparently neurology doesn’t feel it necessary to share those results with me when they got them), and be told that you felt it completely inappropriate to order Rituxan in my case was an enormous shock.  If you felt it was so unwarranted then why had you discussed it at each and every appointment with me for 7 months?  Why had at the previous appointment you specifically said you would be ordering it no matter the results of my biopsy?

If you changed your mind for some reason, then fine, but explain that.  Explain to me why after 7 months of heading towards that treatment you feel it’s no longer warranted when my symptoms are the same as they were when I first came to you.  Instead, you acted as if I was completely off base expecting that treatment to be ordered – you acted as if you’d never once discussed it with as something that was actually going to happen.  It was if all our previous appointments and conversations with you were completely forgotten.

You also treated my chronic fatigue, which is absolutely the most debilitating symptom of this disease, as if it was inconsequential and like it was something to be envied – you wished you got as much sleep as me – instead of something that is a major roadblock in my life, family and career.

To realize that after 3 years of no diagnosis at all, and then 2 years of a misdiagnosis (RA) which lead me through 8 drug treatment plans that were ineffective because they were treating a disease I didn’t have, to go through 7 months of appointments with you that I believed were leading to this treatment being ordered (because you explicitly said so) – only to walk in and have you act like you had no idea why I would be expecting it was absolutely shocking to me.

That was why I was tearful and left – because you minimized my fatigue and acted like 7 months of appointments where you’d suggested and discussed the treatment never happened.

As for the feeling that my symptoms do not warrant Rituxan, I do disagree with that.  In addition to the citations above (I’m a scientist and PhD that is employed at a research university that gives me access to full articles in peer-reviewed journals – I review the research myself before making decisions), the following lead me to believe that it is worth trying:

One of the first things you see when you google “Rituxan” and “Sjogrens” is a recent study that is proported to show that Rituxan is ineffective in treating Sjogrens.  This article is the latest and “seems” to disagree with previous research showing that Rituxan is indeed effective for Sjogrens.

However, that article is merely a summary of the original research article.  When reading the full research article (Devauchelle-Pensec et al. in the 2014 Annals of Internal Medicine), I found the following:

• Randomized, double-blind, placebo-controlled trial
• There was a significant difference in VAS fatigue score at week 6 (p < 0.001), week 16 (p = 0.012) and even at week 24 (where p = 0.105) there was an almost 50% improvement in the VAS fatigue score.
• Dryness improved by week 24 with p = 0.08
• Their definition of “successful” was >30mm change in >2 of the 4 VAS scores.
• They report that improvement in fatigue and dryness was significant – just not at the 30mm mark that they’d set.
• One of their self-reported weaknesses in their study is that “This primary outcome may have been insensitive to detect clinically important changes in symptoms.” (p. 238)
• “Fatigue, which is a major source of disability in patients with primary Sjogren’s Syndrom, was the symptom that responded best to rituximab therapy in our study.” (p. 238)

Clearly they found clinically significant differences in reduction of both fatigue and dryness.  Even a p of 0.105 for fatigue improvement at week 24 is well worth it to someone struggling with daily, life-altering fatigue.  The p value, when representing an almost 50% improvement in the symptoms is significant in real life, even if it doesn’t meet the p<0.05 significance standards (which is an arbitrary line that has been drawn in the sand anyway).  As someone struggling with a disease (that happens to understand significance testing), I’d take a p of 0.08 or 0.105 any day over doing nothing to attempt to alleviate such pervasive symptoms!