Sunday, February 17, 2013

Fevers? What Fevers?

In 2009 I was experiencing fevers, joint pain, headaches, and fatigue. I was put through an extensive amount of tests through my PCP as well as a rheumatologist. The only significant finding was a very teeny tiny m-spike (.19 g/dl at the time) and I was diagnosed with MGUS. I continued to experience the fevers and intermittent joint pain. A few years after my MGUS diagnosis I was again worked up by a different rhuematolgist and the results continued to be unrevealing with the exception of elevated inflammatory markers (high sed rate and CRP).

Last spring, around the time of my biopsy that was suggestive of smoldering myeloma, I started taking the time to record all my symptoms and fevers. I recorded that I had experienced fevers in May for about 3 days (and was hospitalized for a skin infection), 3 days of fever in June, about 8 days of fever at the end of July into August, 6 days of fever in October, 8 days of fever in November, and then I had the flu in December. I know that I had experienced a similar pattern during the previous years as well and assumed that they were either due to MGUS or my nonspecific diagnosis of inflammatory joint disease (although this diagnosis has since been revoked!).

After discussing these strange fevers with Dr R, he suggested I see an infectious disease specialist to determined if these continued intermittent fevers could be due to something other than my smoldering myeloma. As I outlined in previous blog posts, I saw Dr. M, infectious disease specialist, and he speculated that I may have a periodic fever syndrome. I am still waiting for the results of the genetic testing for these syndromes. However, in the mean time, Dr. M requested that I take my temperature every morning when I wake up and in the evening between 7-8PM. For about 6 weeks I have recorded my temperature and I am supposed to go and get blood work (CBC with differential, full chemistries - electrolytes and liver function tests, a CRP, a ferritin and triglyceride levels) when I am having a fever.

And... you know what? I haven't had a fever since I started recording my morning and evening temperatures. I feel like I don't want to say this too loud as I might jinx myself. Dr. M has cured me! Praise the Lord! HA. Well, not exactly. There was one night a few weeks ago I had a temperature that was 100.5 but it was gone by the next morning. My temperature in the evening is rarely 98.6 or "normal" but it hasn't been above 100.5 so far. I have had some night sweats that I have been recording as well. But. Good news - no fevers! Dr. M gave me a journal article that described the different types of periodic fever syndrome and to be honest I really don't have many of the symptoms described as they include abdominal pain, vomiting, conjunctivitis, and rashes. I am still recording my temperature and plan to get the blood work if/when I have a fever.

I received the MD note from my appointment a month ago with Dr. R. Interesting to read his perspective on this whole fever situation.

Ms. Elizabeth ***** is seen today in followup. She is accompanied here today by her very supportive husband, and her sister. Since last seen, Elizabeth has continued to do really quite well. Excitingly, review of her most recent bone marrow aspiration and biopsy, and staining for estrogen and progesterone receptors have been entirely negative. This has provided considerable reassurance to everyone that it would be reasonable for her to plan moving forward with her family in the future, and look to monitoring her smoldering myeloma accordingly. It should be noted that right now at the present time with her bone marrow plasmacytosis being ten percent, she does meet criteria for smoldering disease. Conversely, however, she does appear to have an atypical fever syndrome, but may in fact be a variant of Hibernian fever. She has been seen in this regard by my colleague, Dr. M. In brief, please refer to Dr. M's superb consult summary from her recent visits with him. She is presently under evaluation with a number of laboratory tests for this rare condition, as a possible explanation of her fevers.

‎Most importantly, Hibernian fever may also be potentially driving some of her plasmacytosis. This may in fact mean that she does generally have monoclonal gammopathy of uncertain significance by virtue of actual plasma cell count and her M-protein measurements. Thus, to some degree, the plasmacytosis in her marrow may over represent the actual original clonal population by virtue of a reactive process in the context of the Hibernian fever. However, this all remains to be further elucidated. It is possible that she does not have Hibernian fever, and that she does in fact have smoldering myeloma characterized by a febrile syndrome, and this of course will be an important diagnosis to establish. Whilst her infectious problems are being further elucidated and her febrile picture being better understood, Dr. M has recommended that she avoid pregnancy if possible until he is clear on her febrile picture.

‎Most importantly, Elizabeth's workup for infectious disease has been entirely negative. No significant or atypical viral, fungal, or bacterial processes have been identified.

‎In herself, Elizabeth is reassured by all of the above. She is much more encouraged by the more favorable outlook of her overall picture in this context. She is without new cardiovascular, pulmonary, gastrointestinal, neurological, soft tissue, cutaneous, or other complaints. She has noticed some mild fatigue recently, but that has been in association with her current workload.

Elizabeth is clinically stable, and doing well overall. The expert input of Dr. M has been particularly useful in identifying potential etiologies for her fever. I am encouraged that her plasmacytosis is non-hormone receptor positive, which makes the decision around family planning that much easier for her and her husband. In this context, the additional workup from the Infectious Disease team will be vital, as we plan for the future. Therefore, recommended to Elizabeth we continue with a policy of careful observation. We will await to hear more from Francisco, and indeed were able to connect with him today by email between myself, him, and Elizabeth. She will return to see us in the clinic in the next several months. She will be seen in the interim also by Dr. M. She knows to call should she have outstanding issues or concerns.

Yup. It's all good. Bethesda tomorrow!


  1. Best of luck to you at the NIH/myeloma clinic.
    I have MGUS and went last Oct. for their workup. I am not in their study as it was found out that my MGUS is from my arthritis condition. I am followed every 6 months by a myeloma specialist at OHSU - Oregon Health Science University. The positive tests I have are a high sedrate and CRP, high serum Kappa light chains, high serum Kappa/Lamda ratio and bence jones proteins in my urine. I have no M-spike. My myeloma specialist says I have a 15% chance of progressing to Multiple Myeloma. I go for my testing and then try not to worry about it and just live life.
    My best to you. The NIH folks are very nice and helpful and their bone marrow aspiration didn't hurt me (but I did take a tranquilizer that was offered beforehand)

    Toni for Portland, OR

  2. Thanks so much for your kind words, Toni! That's wonderful you had a good experience at NIH. I didn't realize the Natural History Study had exclusion criteria for arthritis/autoimmune disease, that's interesting. If you don't mind me asking, do you have RA? I've been worked up for all sorts of autoimmune diseases and nothing has been found. You have a great attitude - just live life!

    Take care,

    1. I have severe osteoarthritis in my big joints (both of my knees are replaced) the first one at age 45. I have some other kind of arthritis, similar to RA in my small joints, hands and feet. It responds to Prednisone and I have been on it for several months but now I have to get off because it has given me bone damage (osteopenia) and a very low vit. D level. It is confusing because I have to ween off the steroids over the next 9 months but it is also keeping my light chains and bence jones proteins down. I am concerned what will happen off the steroid to the MGUS. I am a difficult case and is confusing. I trust all my doctors at OHSU (the great medical school in Portland) and am lucky that my PMD, Hematologist, Rheumatologist, Pain doctor, spine doctor and 2 different orthopedists work together and keep me going! I have 5 children 3 in their 30's and the last 2 ages 5 and 7 (we adopted them as newborns when we were 51 and 52!)
      I hope you have a good stay in Bethesada. I traveled there from Oregon alone but was so fortunate that my 31 year old son met me there. He lives in New York City so traveled to DC to be with me!
      My best to you!
      God Bless!

    2. Toni, I'm glad you have great doctors working as a team to take care of you! Your family sounds so wonderful - how incredible you were able to adopt two newborns. That's wonderful you had your son with you at NIH - I was very happy to have my husband with me. God bless!