Phantom Fevers

Phantom Fevers

Periodically and unexpectedly I come down with fevers. Sometimes they come with other symptoms like coughing, congestion, or headaches. But more often they arrive and depart mysteriously.

What I’ve learned about my RA

Over the years I have learned a few things that may ring true or help other people with rheumatoid arthritis to understand random fevers.

  • My natural temperature runs low. Usually my body temperature hovers around 97 degrees. My doctor says this is because prednisone, methotrexate, and the biologic I take can lower body temperature.
  • With a low temperature, it can be difficult to detect fever. I often feel weird or badly in some way before we realize I may be ill. If we check my temperature, it may be up to 98 degrees, which most will still consider low. So I have to both know what temperature is high for my body and also listen to how I am feeling—such as overall illness, sweating, more aches or other possible symptoms.
  • Consult with your doctor about how to handle medications. I’ve had many conversations with my doctor about my medications. If I have a fever the day I’m supposed to take my biologic, I am instructed to hold until I feel better and fully recovered. If the fever goes on for more than a day, I need to call and check in with my doctor.
  • It can be helpful to increase your prednisone. Because I have been on a low dose of prednisone for a very long time, my internist recommends that when I’m sick I temporarily increase my prednisone dosage. Apparently, my body will not naturally respond to illness by producing anti-inflammatories and so the extra kick of prednisone can help with the recovery.
  • Sleep or rest is crucial for recovery. For me, when I have a fever it means I need to spend time in bed, ideally sleeping. Sure, maybe Tylenol or tea will help. But really my recovery depends on lots and lots of sleep. I can spend the whole day in bed and still have a fever.

I’m curious about other RA patients and their experience with fever. Do others get fevers out of the blue? How do you cope with an unexpected fever?

My feeling is to stop, rest, and recover from a fever in the hopes of preempting another, more serious development. Ever since coming down with pneumonia last year, I’m a bit paranoid about an illness that slowly worsens and develops into something that serious. My goal is to head a fever off, nip it in the bud.

I am mystified by my fevers. It feels like in recent years they are somewhat more frequent and I have no idea how to prevent them or treat them except to be vigilant and quick in my response. Perhaps it is a ridiculous thought, but I sometimes think it’s actually my RA. Like the disease is cranky and so acts out with a fever attack on my body that I can’t understand.

My husband, Richard, is helpful and patient when I get a random fever. He plies me with tea and makes sure I rest. But I am sure that it perplexes him as well. I’ve been trying to maintain my overall health and think this year I made progress with getting sick less and also not as seriously. But these fevers are still a strange mystery.

As I continue on my RA journey, I still grapple with situations I’m not quite sure how to handle. But at least I am making headway. At least with phantom fevers I am starting to understand them a little better and tackle them immediately.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (25)
  • ltrejo
    9 hours ago

    Same here! Diagnosed in 2013 and under control until about 2 years ago. Started on methotrexate and prednisone for first three years then developed RA associated interstitial lung disease. Methotrexate caused scarring in my lungs also. Tried Arava (caused neuropathy in feet), Humira, Orencia, Xelxanz, and Enbrel. Nothing controlled the RA and the inflammation moved to my lungs. Started having fevers and flu like symptoms about 1-1/2 years ago. Each one lasted no more than 12 hours but those 12 hours were horrible! Research led me to believe they were RA caused. Latest treatment was an infusion (Rituximab) in October and the RA has responded well. The inflammation has decreased in my joints as well as my lungs. Still on oxygen due to scarring it il take each little victory as it comes. Also now weaning off the prednisone. The weight gain has been difficult to deal with.

  • Recovery101
    20 hours ago

    I get them too! Treat them like a real fever cause they are our bodies fighting our RA illness- don’t get anymore real then that- meds for fever, etc… as u would normally take for fever and other symptoms does help somewhat! As if we don’t suffer enough with RA! Grrrrr

  • KatieR
    1 week ago

    Just curious, are you sure the fevers aren’t actually hot flashes? I am currently dealing with both RA and menopause so I also have a normal temp around 97 but I have to deal with hot flashes as well. However they aren’t constant like an actual fever.

  • Vickilynn
    1 week ago

    I have fever times as well. My Internist did all sort of work up’s on me. My Rumy Doc also did tests. My temp goes up to 102 but mostly 100.5. No definitive conclusion. I power thru or take a nap. I’m on a biologic and Arava. Tylenol 3 helps with the fever and aches.

  • seroinflammatory
    3 years ago

    Thank you, thank you, thank you, thought I was crazy, I have spells of the chills, I don’t take my temp but know from past history that if I am having the chills temp is elevated, find I need to collapse for the duration. If I try to muddle through it starts to feel as if I am wading through cold thick mud,everything starts to act up, breathing, pain, brain fog, vision. Also, interesting sidebar I have been having a “hot flash” almost every evening at approximately the same time, I am post menopausal by at least 5 yrs and always run warm but his is fry eggs on my forehead hot, anybody else?

  • sandyb
    6 days ago

    Me 2!!!!! I thought I was crazy. I have psoriatic arthritis…Very similar to RA.
    Not on any biologics. Trying to heal my gut naturally ♥️

  • Alesandra Bevilacqua moderator
    5 days ago

    Hi, sandyb! If you haven’t yet, check out our sister site Psoriatic-Arthritis.com. It may be useful to you! Warmly, Alesandra (RheumatoidArthritis.net Team)

  • Kelly Mack moderator author
    3 years ago

    Sorry to hear about your chills and hot flashes! We can’t seem to win! I get hot flashes too and have not started menopause, so think it is RA-related. Wish there was more research or knowledge on these strange symptoms! Best, Kelly (RA.net moderator)

  • 12dblfs
    3 years ago

    I was dx a few years ago, though I know I have had it for years. I also have had a low body temp as far back as I can remember. Because a fever to me might be 99. degrees, doctors tell me I don’t have this or that because I don’t have a fever. Mostly I will start shaking, freezing and generally feel like I’m getting the flu, next day it’s like nothing happened 🙂 I have been trying to get my doctor to let me be one low dose prednisone permanently but they are still refusing though I have researched it and brought them the research that says there is minimal risks. Do you have any side effects from low dose prednisone?

  • Kelly Mack moderator author
    3 years ago

    Hi there! I also lend support to the idea of getting a second opinion. Sounds like an adjustment to your treatment may be needed. Unfortunately, there are long term effects of even lower doses of prednisone. Steroids are a powerful category of drugs–really effective at lowering inflammation but don’t tackle the underlying causes of it. Long term effects can include weight gain, hormone changes, and loss of bone density (among others). A lot of the research suggests it’s better to have medications that treat the root actions of RA for more effective relief. Hope this helps! Best, Kelly (RA.net moderator)

  • Jillian S moderator
    3 years ago

    12dblfs,
    Thanks for sharing your story with us.
    I am sorry to hear that the medical providers you are seeing are not addressing your needs. At this point, have you gotten a second opinion? If not, it might be worth looking into. You certainly deserve to be heard and not have to endure these fevers if there is a reasonable treatment. In addition to the feedback I hope you get here, I wanted to let you know that there are two other places you can post you question publicly to our community:

    Community Forums on our website: https://rheumatoidarthritis.net/forums/
    Visitor’s Posts on Facebook: https://www.facebook.com/RheumatoidArthritisDotNet/posts_to_page/

    Feel free to let us know if you have any further questions.
    We are here for you!
    Jillian (Rheumatoidarthritis.net Team)

  • donna hawman
    3 years ago

    I just went to the doctor on Wednesday due to a feeling of a fever & chills as well as other symptoms. My RA doctor, whom I’ve been seeing for about 2-3 years, told me that they thought it was something other than a RA flare up. After reading this article, I now know that it was indeed from the RA. This is not the 1st time that this has happened. Unfortunately, it has happened so many times that i can’t count/remember. I get so frustrated with the doctors and will be taking a copy of this article to show them. It is great knowing that I’m not crazy nor am I the only one that goes through this ordeal. I go from burning up, sweating so bad that I have to change my clothes and sheets, to severe chills like I’m going to freeze to death. Thank you, thank you,thank you for this article & site. I have learned so much about the reality of dealing with RA and that what the doctors have informed me of what my life will be like with RA is not always the same. The doctors “reality” is really not real life “reality”. Just because all the symptoms don’t fit the medical professionals definitions of the disease doesn’t mean that the symptoms don’t exist and that the symptoms are really part RA. I hope this will help me doctors.

  • Kelly Dabel moderator
    3 years ago

    Donna, I’m so glad this article was helpful to you. So sorry you are dealing with these symptoms. You are not alone in this! Thank you for being part of this community. Take care, Kelly Dabel – RheumatoidArthritis.net Team Member

  • Terry F.
    3 years ago

    I have been running fevers (99.4 – 99.7) at different times of the day for almost 2 yrs. Sometimes I am unaware I am running a low grade fever and sometimes I have to crawl into bed. My Rheumatologist has sent me twice to Infectious Disease to rule out any other causes. Even the ID doctor thinks it is from my RA. It causes me to lose focus and have difficulty in concentrating and so I reluctantly left my job. I do not take prednisone. Since it has been going on for so long, I consider this my new norm and get most of my stuff done early morning. People think having RA means joint pain and stiffness and do not differentiate it from Osteoarthritis. For those who do not have RA, they are unaware of the flu like symptoms, fevers, brain fog, fatigue, etc.

  • Kelly Dabel moderator
    3 years ago

    Terry, thank you so much for sharing, I’m sorry to hear that you had to leave your job. You are not alone in the brain fog you’ve described. In addition to speaking with your doctor, you may find this article on brain fog and the impact of RA on mental functioning interesting: https://rheumatoidarthritis.net/living/just-head-impact-ra-mental-functioning/ We’re glad you’re here. Kelly Dabel – RheumatoidArthritis.net Team Member

  • Nanci Burns
    3 years ago

    I also have this problem. I believe it is the RA that causes it. My body temp & blood pressure have always been low, without any drugs. I’ve had RA since I had the mumps when I was a toddler, but it went un-diagnosed until I “bullied” my PCP into sending me to a Rheumy last year. It took the disability determination board looking at my whole life’s medical history to figure out I’ve had this nasty disease most of my life.

  • Amy Donohue
    3 years ago

    Yesterday…for the very first time…this happened to me. I am new to RA. I was dx last year. I am on Xeljanz and 6 mg of prednisone. I thought for sure yesterday I was getting sick. I got all hot…then chills…I went and laid down in bed and tried to drink a lot. The weird thing is that my body temp seems to run VERY low. 96. Is this weird? Does this happen to anyone else? Anyway I took it really easy for the remainder of the day. Cancelled exercise today and actually feel better. This is so strange. I thought what the hell is wrong with me. Then I read this post and said holy cow….I think that’s what happened to me. Thanks so very much for the post.

  • Lisa Butcher
    3 years ago

    I also have this phenomenon! Since my diagnosis, I attribute any weird illness onset to my immune system simultaneously attacking my body and fighting itself attacking my body!(if that makes any sense)
    I have been fighting off strange illnesses my whole life and didn’t make the connection for a while after my diagnosis.
    I know that I have gotten cold and flu like symptoms from exposure to fumes, vapors, perfumes, and certain types of smoke.(doctors don’t really seem to believe this) Also, aerosol spray of any kind will give me bronchitis.

  • weeladylou
    3 years ago

    Hi Lisa,
    I’ve had the same issues! I was given a lovely mains-run aromatherapy lamp which you add water and some drops of essential oil to and after having it on for a while, my breathing becomes really laboured and my chest tightens up to the point it becomes difficult to breathe! Even some candles have started having the same effect on me and my allergies seem to be getting much worse recently too – can’t handle my pet rat any more as I struggle to breathe if I’m holding him for any length of time. Having used candles and burners for many years without issue, it’s all very confusing and frustrating when these things happen on a regular basis now. I’ve mentioned this to my docs but they look at me as if I’ve got horns so I thought I was beginning to lose the plot! Reading about someone else having the same issues was very comforting, thanks for sharing. Have you found any way of alleviating your symptoms (with regards to smoke, perfumes etc)?

  • Rose de Kook
    3 years ago

    Wow just in the midst of one of these fever times. This has come with a cough (I have taken 2 courses of antibiotics) hasn’t even touched it.
    Love that I open my ipad to find others have this. (Mind you not wishing this on anyone).
    Take care everyone. X

  • Deen
    3 years ago

    Wow!!! Seeing this article gave me goose bumps. For the past couple of months I have been experiencing this and thought I was going crazy. Four to five days with a low grade fever and then…. gone. Thanks for sharing!

  • Robbi
    3 years ago

    I also get random low grade fevers. Sometimes it’s as if even my skin is sore! I don’t seem to have them as often. I’m on Humira now along with 10 mg prednisone. I wa on a lower 5 mg dose of the prednisone until a mega flare blew me out of the water this past September and I’m only just beginning to feel better. But, let me say that I’ve found an aromatherapy heat wrap with lavender and eucalyptus heated in the microwave and draped across my neck or shoulders really helps along with Advil. I also just know this is a fight that is best fought in bed with plenty of pillows!! I’ve found some of the essential oils help me find a workable comfort zone. It’s a daily struggle for all of us…hang in there!!

  • salger194
    3 years ago

    I don’t take prednisone. Just biologics outright and prednisone if I have a bad flare. I too get the random fevers and have an average temperature that’s low 96-97 degrees. You have no idea how relived I am to hear its not only me with the random rashes, flushed skin and random fevers!! Thank you for sharing

  • Patsfan6866
    3 years ago

    I was diagnosed late October 2015. Many of my vague symptoms over past 4 years like heat intolerance … and almost always running a low grade temp I attributed to being peri-menopausal.
    In retrospect,I know differently. In fact, although I can’t scientifically prove it, I believe this whole disease made its presence known the day after my 46th birthday. I woke up with chills and a high fever and the most excruciating pain in every part of my body …that was it though. No respiratory issues … gastrointestinal issues … just fever and excruciating bone/joint pain.
    I haven’t experienced anything quite like it since … though I continue to experience both heat and cold intolerance. Now,however, I wish I could blame it on the change, because this disease has been aggressive:(

  • Lucy
    3 years ago

    I have the same issues-prednisone user so low temp, etc. I can always tell when it is a fever as I get chills. My solution is to bundle up and go to bed. I have yet to try the increase in prednisone as I have worked so hard for two years to get my dose down to 5 mg daily that I worry about going up again even if it is for a short time.

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