I have chronic neutropenia for 10+ years (lowest 2.4 K/cu mm, ref: 4-11 K/cu mm). I am chronically anemic with no serum iron deficiency or B12 deficiency and on a diet that includes about 77g animal protein per day. However, when injected with 1mg/ml of cyanocobalamin twice per week anemia abates and returns upon cessation. Routinely flagged low RBC, low HCT, high MCV, low HGB, low MPV. In the same time period, two flagged high serum calcium. (I take no calcium and am dairy intolerant).
One year ago, a routine cbc test indicated metamyelocytes, retest a month later was clear.
I was diagnosed with SLE in 2009, but had certain symptoms at least since 1999. ACR Criteria: malar rash, arthritis, neutropenia, positive high titer ana (since 2007), antibodies to cardiolipin, photosensitivity. Other non-criteria: low C3/C4, alopecia universalis, edema (legs), profound fatigue, mitral valve prolapse, Raynaud's Syndrome, fibromyalgia tender points, bruising, IBD/Crohn's
Within the last month, I've had two episodes of erythermalgia--feet for about 1 hour and one episode of vertigo upon waking.
After reviewing online sources and research:
but more importantly:
short stating "Leucopenia was a risk factor for myeloid leukaemia development and an MDS was frequently seen. Therefore bone marrow investigation should be considered in SLE patients with long-standing leucopenia and anaemia."
I think I misunderstood your question. Are you seeking a hematologist because you feel that your rheumatologist is not treating you adequately for your SLE and possibly missing a cancer diagnosis?
First, your new symptoms of erythermalgia and vertigo are consistent with SLE and anemia. You should present this information to the rheumatologist as an indication that your SLE is worsening, and to repeat a CBC to see how anemic you are.
Second, your rheumatologist is the best person to understand the nature of SLE. It is common to see leukopenia in SLE, but it is often not treated unless you suffer from many complications from it, ie recurrent infections etc. This is because the treatment for it can cause worse complications if you're otherwise okay. The drugs themselves are toxic, and are like low dose chemotherapy. Side effects include bone marrow suppression and worsening leukopenia and can cause a disease flareup where you see more clinical symptoms of SLE.
Third, your risk of cancer is just a tiny bit increased in certain areas, and not so in others. Specifically, SLE puts you at risk for Hodgkin Lymphoma, lung, vaginal and cervical cancers, and twofold in breast cancers. You should maintain all screenings when they are appropriate for your age / other risk factors, and include workup for blood cancers. It's not a bad idea to have a hematologist get to know you early on, especially in the advent of worsening SLE. The hematologist will be well equipped to provide screening for the blood cancers, but I am not sure how much they would impact your immediate treatment plans.
TL;DR: I think it is worth establishing a relationship with a hematologist.
Thank you for your reply. Really.
I was looking for reassurance that seeking a hematologist was not an unwarranted request given my present situation. I was aware that my lab results and symptoms are completely consistent with the SLE diagnosis, but that sometimes people (including doctors) may have a little tunnel vision (bias) and may inadvertently miss an concurrent illness. I am generally content with my Rheumatologist but...
I did present the Rheumatologist with the erythermalgia and vertigo and he did not know what the first was and stated the second was likely not linked to SLE. Then when reviewing the latest labs (with anemia and neutropenia) said the SLE was under control. I was not aware that they might be a symptom of worsening.
Would you expand upon the workup for blood cancers?
You're always entitled to a second opinion with a different rheumatologist as well, if that will also make you feel better. Most of the time, I answer medical-related questions on reddit with the bias that there is something in the story that is missing from the patient's POV that the doctor is aware of, so I tend to naturally be biased on the side of the doctor's. However, as much as there is evidence-based medicine, there is also an art in how to treat the clinically stable, as in going aggressively, or just patiently monitoring until problems become out of control. Different doctors can choose to do things differently, so you can present these problems to a different rheum. I say possibly worsening SLE because they are new symptoms, but this might not be the right terminology (I am only a medical student after all). It is probably better to say that this is the natural progression of disease.
The workup for blood cancers includes immunoglobulins and electrophoresis. It's all just based on blood testing as opposed to imaging, however.
Thanks for the input. I also tend to see things as a natural progression and I tend to write off most symptoms as part and parcel. Unfortunately, this tendency led me and my doctors to dismiss obvious signs of autoimmune disease activity as "harmless" fibromyalgia for about seven years. This ended up being time lost in treatment and a global worsening brought on by behaviors that are suppose to make FM better, but make SLE worse. This was not the first time a neglect of symptoms ended with a worse outcome than if symptoms had been fully explored. Since reading, "How Doctors Think", I've been more pro-active, which unfortunately nearly 100% (actually 98%--just ran the stats) of doctors have misread as neurotic. As in this case, I am not "scared", strongly concerned, worried or obsessing about having cancer--but merely trying to ensure that any problem doesn't fall through the cracks of "frog in the pot" or http://www.kevinmd.com/blog/2011/09/confirmation-bias-physicians-patients.html. Posting in reddit is actually my way of double-checking my own potential bias.
I am aware that medicine is an art--a mix of knowledge, experience, skill and every doctor will provide different care, much as different artists produce different art.
I actually ran into this paper of which you speak...which was funny, because about six months prior, after learning more about antibodies, etc., I stated to my husband, "I wonder if wiping out bone marrow and starting fresh would stop the production of auto-antibodies?"
edit: with a transplant of course...
Yes, to be honest with you, if you were a new patient of mine and you simply said you wanted a workup for cancer because you read online that people with SLE are more likely to develop cancer, I would probably roll my eyes. For me, I find that a lot of medicine is simply pattern recognition and I could very quickly dismiss you as another one of "those" people. I do believe you though now, and it is entirely understandable to want to be on top of your condition and make sure things do not fall through the cracks. I still stand by my original advice that it's not a bad idea to develop a relationship with a hematologist, preferably one that works in conjunction with your rheumatologist (but it's not a hassle to keep communication between them open, especially with you being on top of your medical care). And you can always get a second opinion.
As far as I can tell you, I can not find any evidence-based information about the benefit of aggressive screening for cancer for SLE patients. It simply is to just include screening for cancers that you wouldn't normally screen the population for, like blood cancers. You can request this from a primary doctor or your hematologist.
Your first sentence is why I broached the subject cautiously and ended up not even requesting the consult from the Rheum--even after three years, he has not spent enough time with me to understand that I don't obsess, don't request ANYTHING lightly, and just wish to ensure (within bounds) that things don't get overlooked especially since I have a tendency to downplay symptoms. I even have to remind my husband how bad I feel because I'm just so good at hiding it, even to myself.
From the literature, I would agree with your assessment on the additional screening in SLE. For all the other cancers, my risk (from the research) due to heredity, environment, and lifestyle are likely significantly lower than most with SLE and even most people in general.
I do have a PMD who is good at referring.
As last but not least, I have yet to find two doctors from ANY specialty who will actually discuss anything with each other! I hope in your career, you will have more luck with this.
My experience is limited to the hospitals, but we're constantly calling PMDs. We write extensive discharge summaries that explains why you came to be hospitalized in the first place, what you were treated for, how you were treated, any complications that came up, any procedures, labs, and imaging done, and why we felt you were safe for discharge. Often, the PMDs call US if they feel that we're not updating them enough (and then we feel guilty, but also a bit pleased that the PMD is so awesome). At least one patient was discharged, and the resident still took it upon herself to follow up on a culture and call the PMD after she was on a different service, just to make sure that he was followed up properly (she was kind of special though, IMO, and a role model).
Never feel guilty for trying to ensure your health. Even if the doctor complains and thinks you're crazy. I think you're allowed to push once a year for whatever you want extra checked out within reason that isn't too invasive, doesn't require antibiotics, or involves a random radiographic scan with no complaints. Just keep your appointments, take all your vaccinations and medications, and any doctor would be happy. The fastest way to upset a PMD is failing to take medications or just refusing to make lifestyle modifications to lose weight when we tell them to.