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Enbrel, or tnf-inhibitor, users

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Posted 12/4/2006 5:00 PM (GMT 0)
I've been running a low grade fever for a couple of months now.  I've noticed that after I take an enbrel injection on Saturday morning, Sundays, my temps tend to be a bit lower.  They've been running between 100 and 101 degrees F, but after the enbrel injection, they are usually between 99 and 100 degrees F; sometimes even normal.  I did not take my enbrel injection this past Saturday (rheumy's instruction) due to possible hidden infection.  My temp shot up again yesterday, and stayed there just about all day.  I didn't feel that bad, just had a low grade fever.  My question--can enbrel, or other tnf-inhibitors, mask a fever much like prednisone can? Is this one reason why the risk of infections with enbrel and other drugs in its class is so high?  You don't know you have an infection until it gets quite serious?

Just curious,

Elcamino

Posted 12/4/2006 9:59 PM (GMT 0)
yeppers.

immunomodulators & immunosuppressants manipulate the immune system just like how you stated.

Enbrel, Humira, Remicade manipulate the immune system in a different way than prednisone & regular immunosuppressants do...but still in a similar manner.

so what we're looking at is in peeps like us...who are immune-compromised or immunosuppressed; a temp of normal 98.6 can in fact be a fever!   so what i usually did with patients like this is take into consideration other physical objective manifestations like heat, facial flushing, body heat, sweating, BP, P, and kinda keeping in mind that 99 degrees could "really" be reading 101 or 100 degrees. 

going by a white count can be false as well.  even with a bacterial infection in us...we may show a within range WBC count.

so they do put that oh so securing waiver (yeah right) of "rare & fatal blood infections have occured blah blah blah...." eyes what they're talking about is sepsis. but absolutely no one should inject any biologic when febrile.  so be careful El.

have they said that you should run a course of antibiotics?

have they ruled out any TB?

take care El....write back soon.

erin

Posted 12/5/2006 12:38 AM (GMT 0)
Hey Erin. Thank you so much for your so informative reply. I thought enbrel could do that, but wasn't sure. I know prednisone can because my mother took prednisone for so many years. Rheumy told me to skip my enbrel injection this week, and yes, he did put me on a 14-day round of antibiotics. But the antibiotic he prescribed is for a sinus infection (that's what he said anyway). Not so sure I have a sinus infection, especially since I've had this fever thing before without sinus symptoms. My temps still been up between 100 and 101 today. I start feeling really hot, similar to a hot flash but not quite the same thing. I get the chills too, which tells me my temp is spiking, yes?

I had a negative PPD test, so no tb. Although, interestingly, when I had the high resolution ct scan on my chest, I had scarring in my lung apices that is typical of an old tb infection. To my knowledge, I've never had tb, but pulmonologist kept asking me if I had a PPD test? My WBC count has been within the normal range. Primary did bloodwork a month ago that was normal, and my rheumy did bloodwork last week. He didn't call me, so I assume it was normal as well. Your reminder of "rare & fatal blood infections have occurred blah blah blah..." really scares me because I cannot find a primary that will take these biologics seriously. I flat out asked my primary if I should take my enbrel with a low grade fever and sinus infection, and she said sure thing. I know if I would have asked my rheumy he would have said absolutely not.

Thanks Erin, and you take care too.
El
Posted 12/5/2006 4:00 AM (GMT 0)
Look at that... learned something new today... huh... I did not know that...
Posted 12/5/2006 6:39 AM (GMT 0)

whoa this is SCAREY!

1st hand, personal encounter myself?  MANY M.D.s DO NOT EVEN KNOW A DRUG CALLED ENBREL/HUMIRA/ORENCIA/REMICADE!!!!!  This is alarming...so, as the responsible people we are, I think we all should make sure that our primary MDs are aware of exactly WHAT these TNF inhibitor drugs are! and I feel that we should know that THEY know! whew.  so many times i've had just a regular internal med doc ask, "what's that?"

but the rule of thumb is :  if you have a fever (...over 99.0 even...) hold the injection & call the rheummy.  it's dangerous DANGEROUS to take the TNF injections or Remicade or TNF infusions while febrile.

so you're doing the right thing by holding the shot.

from experience with working with TB patients...the only clear cut way to DX & rule out TB is through a sputum culture; actually 2 negative ones is conclusive for a defiitive - diagnoses.  would your pulmie go that far?  probably not if he doesn't even suspect TB or a reactivation of it. but perhaps its worth while?  have you ever had a biopsie of the tissue in the lungs? 

have you any cough that's rusty/blood tinged spit that comes up????  weight loss???

geesh El,  eyes somethin's cookin' in ya hon! sad   hopefully the AX you are on is a brooad spectrum one that will cover & kill mostly everything.  perhaps this will clear after the AX are finished!  hope so. if not???  eyes seems like we might have to dig further.

i mean, it is common & pretty benign to become a person who has chronic sinus issues due to the meds for AI diseases...but the constant temps you have & chills are worrisome to me. eyes

so much to keep on having dumped onto your plate i know. you don't need anything extra. 

who do you see next?  i'll pray that your antibiotics do a world of good for what's going on inside. {{{{{{{{{{{big BIG hug }}}}}}}}}}}}}}}} my hugs work.  ;) 

Posted 12/5/2006 11:54 AM (GMT 0)
Gosh el i hope you get better soon ~ i just dont know what to make of any of these meds we are taking. i dont think i want this med over pred? i am so confused :( well i hope you are better soon as well as everyone else out there duck erin camama~ u know i think i had the cough thing early in the program and that flu shot knocked it right out ... i still get coughing bouts but not like before..... did everyone get flu shots?

well g2g signed~ a more confused about meds to take person ~yalinda
Posted 12/5/2006 12:19 PM (GMT 0)

Hi Erin and Yalinda.  Thanks for your concern.  Erin, I no longer see the pulmonologist; he cleared me for mtx and that was the goal.  I have no sx of tb (thank  God), so I don't think I have it.  Because of our conversations, though, I think I'm going to make an appt with that infectious disease doc my rheumy wanted me to see.  I've been on the antibiotic for a week now, and there's been absolutely no change in my temps; I'm only supposed to take it for another week.

If I stay on enbrel and mtx, which I want to because they work, I think I should get to the bottom of these temps.

Elcamino

Posted 12/7/2006 12:48 PM (GMT 0)

Well, I finally called the Infectious Disease doc my rheumy wanted me to see.  She couldn't get me in until January.  So, I called another one, who is actually closer to where I live.  They said they will give me an appointment but not until they get my records from my primary, so I'm still kind of hanging, waiting to find out when I can get something done about this.  They said it could take a couple of weeks to get my records, but then they gave me the impression that I could get an appointment relatively soon after that.  I guess Infectious Disease docs require the medical records before seeing the patient because their job is kind of like looking for a needle in a haystack--every bit of info. is useful?  In any case, they told me to start tracking my temp all day long and writing it down.  I'm still waking up with temps of 100 degrees F or so; it goes a bit higher throughout the day, but rarely gets over 101?

My rheumy called 100 degrees F a low-grade fever.  He told me not to do my enbrel injection this last Saturday, but that I can start them again this Saturday--presumably after the antibiotic he gave me has fully kicked in.  The only problem is the antibiotic I've been taking since last Wednesday is not doing a thing.  Still have the fever.  Should I still go ahead with enbrel injection, or hold off?  It could be a while before I hear from this ID doc, and I'm certainly tired of hurting (aren't we all?).  But if I have an infection somewhere, couldn't that be a lot worse than hurting?

thanks!

Elcamino

Posted 12/7/2006 8:39 PM (GMT 0)
yes indeed! hmmmm? this is a tough one. my heart of hearts says "NO"...no shot with a temp. personally i would not do it. i would hold off. i would call & tell the rheummy.
now, i had strep throat 3 years ago...and once the temp was down i was able to take Enbrel. but...the strep infection was still there! i had no effects from the shot. nothing happenned. but was it because the fever was down? or was it because the infection was under control?
perhaps ask...if you take a fever reducer like tylenol...wait for a normal temp....then take the enbrel? or see what he says. i would leave it in the hands & knowledge of the physician.
no harm in waiting...could be harm in not waiting.
i wouldn't chance it.
let us know what the doc says.
{{{{{{{{{{{ big hug }}}}}}}}}}}}}}}}}}
Posted 12/8/2006 1:15 PM (GMT 0)
Hey el.. did you call your doc? Any news?
Posted 12/9/2006 3:13 PM (GMT 0)
Itsnt it amazing how us Ra Patients, go thru so much havic between symptoms, Flare-ups, and side effects, on one hand we take our Medications, to keep our Rhuematoid under control with the hopes of slowing the progression down, but then on the other hand we must manipulate our immune system to do so, which causes us to go through all of the crap like increased suseptibility of possible Tb, Lung Scarring, Sepsis, constant COlds, Fevers...etc etc...

I work at a hospital and I have Ra, and its soo hard to not get sick, and not too long ago, I had a really severe Chest COld, and eventually Laryngitis along with everything else...I had to stop all medications just soo my immune system to get stronger to build and fight these infections...my Rhuemy told me that if I didnt rest, then by monday he would admit me due to possible sepsis...I almost freaked out, but I follow his instructions and eventually i got better, and now im slowly started back on all those wonderful meds that I have to take....arrg

soo just hang in there, As for the Fevers, whether they are low Grade or fevers that run high, just make sure u stop the enbrel imediately & contact your Rhuemy or PCP imediately..

I hope u feel better

ttyl
BabZ
Posted 12/11/2006 9:46 PM (GMT 0)
That's right! Great post Babz & good advise. Yeah...when I worked the med surg unit, right after my first day back form a long leave I came down with a fever, infections...and a major RA flare. Oy!
Again, welcome & it's really nice to have you.
Posted 1/7/2007 1:18 AM (GMT 0)
Thanks Erin K.....and Im glad I found this site....Its nice to have a forum that people can relate to, especially with what we all go thru on a daily basis...Sometimes People like freinds & familes dont understand, or if they do understand, you dont want to burden them with all the bad days....soo Thank you for making me feel really welcome....

tty
BabZ
Posted 1/8/2007 2:48 PM (GMT 0)
ElCam,
Stay strong and keep digging. I admire your "take charge" attitude in this situation, perhaps you have a carear in medical research!

... own your disease ... Craig
Posted 1/24/2007 4:08 AM (GMT 0)
Wow, this is a great thread. I need to read each and every word. elcamino, yikes, I am so glad you asked about this stuff. Why did my doc let me take Enbrel when I had a low grade fever. I was on antibiotics but STILL.

It turned out that I had a tooth abcess - and my dentist knew it but failed to inform me. I had been running a low grade fever for a long time. Usually an abcess does not cause a fever but if it goes undetected and progresses far enough it can give you a fever. It is definitely a hidden infection. If you cannot find the cause of your problem (forgive me, I didn't read every word of this thread but I do appreciate it), then I would have a top to bottom dental evaluation. I might even go to a different dentist. I go to the University of Maryland dental school in Baltimore and they are TERRIFIC.

Eve
Posted 1/24/2007 12:41 PM (GMT 0)
hey Eve,

a good thing to do is periodically ask for the latest info on Enbrel & such meds from either the pharmaceutical co. or finding it online.  the Arthritis Foundation is really like the best reputable source too.  a lot of these drugs for AI diseases?  they're always coming out with new research/info/and in all good things to know.

 

what i'm happy about is, many of the tnf drugs and dmards are spreading into the realm of treating more and more AI related diseases beyond just RA and PsA.

 

yeah, many times doc's hold different practices on whether or not to allow or to hold an injection when there's a temp.  some are stiff/dead-set on "if there's a temp...NO WAY!"  and other rheummies will give a parameter of like, "nothing above 100".

but it is ALWAYS better to be safe than sorry, because sepsis is the biggie with an infection/fever and then giving yourself the med.

 

take good care.

erin

Posted 1/24/2007 12:43 PM (GMT 0)
oops...i also wanted to add, that it's sometimes very common and "normal" for a patient suffering from an AI disease to have a white count and also run a higher than normal temp.

 

makes everything oh the more easier to figure out right?!? eyes

Posted 1/24/2007 2:35 PM (GMT 0)
I had a low grade fever for years. Nobody knew where it came from. It went away after I had the wisdom tooth pulled a month ago. I think a chronic low grade fever needs to be investigated.
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