They do warn everyone about this (enbrel issue)

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elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 2/13/2007 6:13 AM (GMT -7)   

All of us have heard, I'm sure, that enbrel and other tnf-inhibitors can reactivate latent tb infections (old infections that were never treated for whatever reason).  it may have happened to me.  Some of you may recall that I had some sort of weird lung infection this past summer when I first tried mtx.  Got a complete work-up with a pulmonologist and everything.  An HRCT scan showed scarring and fibrosis consistent with an old tb infection, but I've never been diagnosed or treated for tb.  I remember pulmonologist asking me a couple of times if I had ever had tb?  Now where on earth would I have been exposed to tb?  Nothing was done about it at the time.  Fast forward to the present.  I've been seeing an infectious disease doctor for these low grade fevers I keep getting.  She read my old ct scan, said it looked highly suspicious for an old tb, and that  enbrel could have reactivated it which is what is causing my low grade fevers.  She has ordered another PPD test with control, but said it will most likely be negative.  It's a very gross measurement at best, and immunosupressant drugs will mask a  positive.  She also ordered another HRCT scan with contrast (didn't have contrast before) to compare to the one I had last October.

Now, I've been scratching my head trying to figure out where on earth I picked up tb?  I grew up in middle-class suburban america, although I did live a while in Spain as a kid.  After thinking about it, I realized that I probably have been exposed to tb.  When I was a graduate student, I took about a year off and worked for a research facility that conducted clinical trials research on drug rehab.  I worked in a rehab clinic with IV drug users (heroin).  Much of my "glamorous" job entailed doing breathalyzers on the clients.  I was trained to always point the little tube away from my face, but these people had all kinds of icky things.  I would not be surprised if one or more of them had tb.  I know several of them died of AIDS while I was there.  Also, during that year the primate lab at that facility had an actual tb scare.  I didn't work with animals, and actually had never even visited the primate lab.  However, when one of the  monkeys came down with tb and gave it to an animal care worker, the entire building (including myself) was forced to do a PPD test.  I remember there was quite a hullaballoo about it because many of our scientists were from other countries, and tested positive on the PPD, but did not have tb.  I, of course, tested negative.  I suppose it is possible that I picked it up there, but didn't get terribly sick with and never went to a doctor for it.  I was a heavy smoker at the time, and sported a nasty little smoker's hack.  Could have mistaken tb symptoms for that?

 

In any case, just thought I would share my experience with those of you taking the tnf-inhibitors.  Everyone should start demanding a chest x-ray in addition to a PPD test prior to starting these drugs.  I'll let everyone know how it all turns out.  Jeez, just when my arthritis is going into remission, this stupid thing has to come up.  If I have to be treated for tb, I have to come off all of the immunosupressant drugs.

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/13/2007 11:26 AM (GMT -7)   
Wow El... I just don't know what to say... hang in there, and keep us posted... {{{{{El}}}}}
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 


Harley Diva
Regular Member


Date Joined Oct 2006
Total Posts : 160
   Posted 2/13/2007 10:43 PM (GMT -7)   
Hi Elcamino.......So sorry just when you start to get better. Keep us posted. I worry about the same thing with the TNF inhibitors. It may help when they clear the infection. Keep us posted......

Harley Diva
 
....RA, HPT,  drugs: Sulfasalazine, MTX, prednisone, bp meds


EveSasser
Veteran Member


Date Joined Mar 2006
Total Posts : 808
   Posted 2/14/2007 2:34 PM (GMT -7)   
Hi, there. Maybe you will feel really good after they clear up the infection. I know these nagging infections can really drag a person down. I'm crossing my fingers.

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 2/14/2007 8:08 PM (GMT -7)   
((((((((((((((((((((((hugs)))))))))))))))))))))) try not to worry to much, take it one day at a time. were all here for u :) wish i was there for u ~*yalin

yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 2/14/2007 8:12 PM (GMT -7)   
oh and el if it is tb do me a favor and stick the diagnosis on a piece of paper up ur other doctors u know where!

u know the guy who said u didnt need a specialist .... sry but i remember he gave u a hard time. it just makes me mad that he ignored ur concerns early on.......... tc yalin

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/14/2007 9:16 PM (GMT -7)   
El...wow, well you do what needs to be done. You go get em' tiger, you're a tough cookie.
TB is really a lot more prevalent than we may think. As a nursing student in 2003 through 2005...I had quite a few pt's with TB! They were from the city I live (nice town) between age 50 and 70...
I was shocked actually at how common so many of the nurses said TB is seen a lot.
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Restaril; Dilaudid 4mg tabs for pain. 


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 2/15/2007 2:02 AM (GMT -7)   
I also had the same scare. I had a chest xray and negative PPD before begining Enbrel. After a year on it, I had something show up on another chest xray. Then I had a multiple skin test with things that I would have been expected to react to - only I didn't react at all. This is called "anergic". I didn't worry about the possibility of TB until this "spot" showed up even though I worked in an ER at a hospital that had the highest PPD conversion rate in the country for 10 years. Back then, I actually had several PPD tests done for "night sweats" but it was eventually determined that I was having those from undiagnosed Crohn's Disease.

I eventually got a CT of my chest and we found nothing. Whatever was on the CXR was apparently on a rib and not from my lung. I hope that whatever is happening, you can get this under control and not have to worry about continuing your meds. I know how much Enbrel helped me.
Keah a.k.a. Wormy
 God helps those who help themselves.
Please help us support this invaluable forum.


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 2/15/2007 9:46 AM (GMT -7)   

Interesting Keah.  Nothing, except the nonspecific finding of peribronchial cuffing, ever showed up on my CXR.  But the ct scan I had done last October showed apical scarring, with the peribronchial cuffing--ID doc says that the scarring is typical of an old tb infection.  Pulmonologist I went to last October said it was typical of an old infection, but he didn't specify tb.  I just completed another ct scan this morning with contrast (I had it without contrast last October).  Hopefully, this one will give us something more to go on.

 


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Aciphex, Ultracet, Zyrtec, Allavert-D, Zantac, Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan

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