Home | Contact Us | FAQ | Search & Site Map | Link to Us
Sign In | Join | Other 45 Sites in Network
Home
Discussion Groups
General
GeneralCardiologyVisionDentistryPharmacyLaboratoryNutritionAlternative
Diseases and Disorders
AIDSAlzheimer'sArthritisAsthmaCancerBreast CancerDiabetesEpilepsyGlaucomaHepatitisHerpesLupusProstate BPHProstate CancerProstatitisSinusitisTinnitus

Medical Forum / Diseases and Disorders / Arthritis / January 2007

Tip: Looking for answers? Try searching our database.

more sinus/Enbrel questions

Thread view: 
Enable EMail Alerts  Start New Thread
Thread rating: 
Sharon - 24 Jan 2007 20:35 GMT
    As I've posted here a few times, I'm fighting to clear out a chronic
sinus infection so that I can start taking Enbrel.  I had a followup with my
ENT today and we decided to just schedule surgery to vacuum me out good and
clean.  She said that even after surgery, the polyps could come back, and I
could re-fill up with crud.  This is mainly because I've had the sinusitis for
so long - we don't know how long for sure, but it could be 3 or 4 years!  But
of course surgery is the expeditious thing to do since we've already been
fighting this for several months.
    My first doses of Enbrel are still in the fridge.  It doesn't bother me
to wait, but I'm wondering...  if I'm prone to sinusitis is it possible that
I'm not a good candidate for Enbrel treatment?  I don't mean to sound like I
don't want to try it, it's just an honest question.  If the drug tends to cause
or worsen sinusitis, and I have sinus problems *anyway*...  you know what I
mean?
    What bothers me mostly is that since it's a drug side effect, none of
my doctors really seem to know what to tell me.  The reumy just wants me to
take the enbrel NOW, side effects are my problem.  The ENT just had a blank
look when I mentioned Enbrel and it's side effect.  The Enbrel nurse hotline
would only tell me NOT to take Enbrel if I had sinusitis.
    Am I asking the wrong question?

- Sharon
"Gravity...  is a harsh mistress!"
shenmei9wise@gmail.com - 24 Jan 2007 21:41 GMT
Hello Sharon,
Sinus infections are a possible side effect of enbrel.  That said,
there are many strategies for dealing with chronic sinus infections.  I
use a neti pot eery day which is just another wasy of doing sinus
irrigation (I use saline, baking soda but there are lots of solutions
available).  You need to talk to an ENT specialist who does understand
the enbrel/sinus connection for a second opinion.  I have had one sinus
infection in my life but since beginning enbrel I have had sinus
drainage that I have never had before.  I would probably be having
sinus infections if I weren't taking chinese herbs, doing a neti pot
irrigation and watching my dairy input.

FUnny thing is , I didn't have that response to humira and there seems
to be a slightly different profile for humira usage.  I would do some
research to find out if the side effects profile between the two drugs
shows any significant reduction in sinus infections.

Melinda

>         As I've posted here a few times, I'm fighting to clear out a chronic
> sinus infection so that I can start taking Enbrel.  I had a followup with my
[quoted text clipped - 19 lines]
>  - Sharon
> "Gravity...  is a harsh mistress!"
DianeW - 25 Jan 2007 05:45 GMT
Sharon - I am one of those who gets frequent sinus  infections.  I have
since I was a child. On Enbrel it was even worse. I had frequent
Infections that took months to clear. This went on for 5 years until I
got a really bad cold with bronchitis.  This . landed me in the office
of an infectious disease doctor. He treated me with IV Antibiotics for
6 weeks. He also tested me for low IGG which can cause frequent sinus
infections and bronchitis.

Turned out I had low IGG which gave me a new dx - Common Variable
Immune Dificiency. I  was treated with monthly IVIG infusions.
The good news is that I haven't had a sinus infection now for almost 2
years. I was on Enbrel for over a year before I developed another side
effect - abdominal abcess.  That one almost killed me and I stopped
Enbrel completely.

I'm telling you this because if you get frequent sinus infections you
might want  to get tested for low IGG to see if that's you.  I also
wanted to make sure that you take all the side effects seriously. I had
5 wonderful years while Enbrel controlled my RA.  And now a year of
hell. Of course I have tons of other medical problems that contributed
to the demise of my immune system.

The side effects of Enbrel changed in those 5 years but I never went
back to see what might have been added after approval.  Hope this is
helpful to you.

Cybevhugs - Diane W.
Sharon - 25 Jan 2007 17:41 GMT
> Sharon - I am one of those who gets frequent sinus  infections.  I have
> since I was a child. On Enbrel it was even worse. I had frequent
[quoted text clipped - 3 lines]
> 6 weeks. He also tested me for low IGG which can cause frequent sinus
> infections and bronchitis.

    What's IGG?

> Turned out I had low IGG which gave me a new dx - Common Variable
> Immune Dificiency. I  was treated with monthly IVIG infusions.
> The good news is that I haven't had a sinus infection now for almost 2
> years. I was on Enbrel for over a year before I developed another side
> effect - abdominal abcess.  That one almost killed me and I stopped
> Enbrel completely.

    Ugh that's horrible!  It reminds me that I'm worried about something
else:  I occasionally have to cough due to a feeling of congestion in my chest.
By occasionally, I mean one "spell" every week or two.
When I cough, I am able to expell some mucous.  It never comes all the way out,
so I can't spit to check the color or anything.  But coughing seems to irritate
my lungs or bronchia, so I cough more.  And more.  The more I cough, the sorer
it gets in my chest, and it also starts to taste/smell kind of like blood.  I
have to sort of force or psych myself into not coughing because I feel like I'm
just tearing myself up inside.  
    I know that's very wrong, and it worries me, so I'm going to mention
it to my reumy next time I see her.  I'm also on MTX and I noticed that MTX
has a rare side effect of causing lesions in the lungs.  
    But it could be just bacteria from my sinuses migrating down to my
chest, so I'm trying not to freak out.  But I WILL have it checked.

> I'm telling you this because if you get frequent sinus infections you
> might want  to get tested for low IGG to see if that's you.  I also
> wanted to make sure that you take all the side effects seriously. I had
> 5 wonderful years while Enbrel controlled my RA.  And now a year of
> hell. Of course I have tons of other medical problems that contributed
> to the demise of my immune system.

    I don't know if I am prone to sinus infections.  I've had them
occasionally while growing up, and I never had allergies.  I suspect that this
one started from a bad head cold that I had a few years ago.  The reason I
didn't have it treated sooner was because I really had no symptoms other than
persistent hoarsness.  I did ignore that for a while, but then tried to get it
treated but the docs couldn't find a reason for it and none of the treatments
helped.  So that was a time-consuming goose chase.  Finally, the bacteria from
it started to cause bronchitis, and THEN we got on the right track.

> The side effects of Enbrel changed in those 5 years but I never went
> back to see what might have been added after approval.  Hope this is
> helpful to you.

    Yes, it is!  Also, for the other poster, I do sinus rinses twice a day,
and while I am draining finally, there are calcifications in my maxillary
sinuses that will only come out via surgery.  I was thinking that once a day
sinus rinse might be a good regimen while on the Enbrel, even if I don't have
problems with my sinuses.  (My ENT sold me a Neilmed set, which I love.  It's
much easier to use than a nettie pot.)

- Sharon
"Gravity...  is a harsh mistress!"
spodosaurus - 25 Jan 2007 18:00 GMT
>> Sharon - I am one of those who gets frequent sinus  infections.  I have
>> since I was a child. On Enbrel it was even worse. I had frequent
[quoted text clipped - 3 lines]
>> 6 weeks. He also tested me for low IGG which can cause frequent sinus
>> infections and bronchitis.

The bugs 'cause' the infections, the low IgG is part of the body's
failure to mount an appropriate immune defense.

>     What's IGG?

It stands for Immunoglobulin G (IgG), which is one of many generalised
classes of antibodies produced by the immune system. It is a mixture of
antibodies for a wide variety of antigens.

>> Turned out I had low IGG which gave me a new dx - Common Variable
>> Immune Dificiency. I  was treated with monthly IVIG infusions.
[quoted text clipped - 15 lines]
> it to my reumy next time I see her.  I'm also on MTX and I noticed that MTX
> has a rare side effect of causing lesions in the lungs.  

Bloody oath! You should be mentioning this to your doctor ASAP!

>     But it could be just bacteria from my sinuses migrating down to my
> chest, so I'm trying not to freak out.  But I WILL have it checked.

Bacteria from the sinuses should not be able to get down there unless
your lungs are not clearing the mucus that they are producing in the
airways. All mucous flows OUT of the lungs, where it can be coughed out
or swallowed. You need to get this checked out very soon, please. There
are various bugs that can slowly grow and tear you up, especially when
on MTX (or other similar medications).

Regards,

Ari

Signature

spammage trappage: remove the underscores to reply
Many people around the world are waiting for a marrow transplant. Please
volunteer to be a marrow donor and literally save someone's life:
http://www.abmdr.org.au/
http://www.marrow.org/

Sharon - 26 Jan 2007 16:53 GMT
>>     What's IGG?
>
> It stands for Immunoglobulin G (IgG), which is one of many generalised
> classes of antibodies produced by the immune system. It is a mixture of
> antibodies for a wide variety of antigens.

    Ah, I see, thanks.

>>     But it could be just bacteria from my sinuses migrating down to my
>> chest, so I'm trying not to freak out.  But I WILL have it checked.
[quoted text clipped - 5 lines]
> are various bugs that can slowly grow and tear you up, especially when
> on MTX (or other similar medications).

    Yep, I will.  A few months ago my ENT ordered a CT scan of my sinuses
and one for my throat and upper chest.  (To investigate the hoarseness some
more.)  My throat area looked fine, but lo and behold they noticed some "nodes"
in my lungs.  The report said they're not a problem but they should be followed
up on.  I just got a copy of that report from the ENT so I can give it to my
reumy when I see her in a couple weeks.
    As a mostly healthy person with a bit of chronic but mild aching, it
worries me sometimes that my reumy's treatment isn't causing more harm than
good.  Immunosuppresants are just scary things.  It's counter-intuitive too,
that you should treat an illness by suppressing the immune system.  It might
help one thing, but you have to wonder what else it's opening the door to.
Along the same lines, my ENT reminded me that I need to stop any blood-thinner
medications a week before surgery.  We all know why.  But then I started
wondering if the same shouldn't be true for immunosuppresants....

- Sharon
"Gravity...  is a harsh mistress!"
Nann Bell - 26 Jan 2007 17:31 GMT
>     As a mostly healthy person with a bit of chronic but mild aching, it
> worries me sometimes that my reumy's treatment isn't causing more harm than
> good.  Immunosuppresants are just scary things.  It's counter-intuitive too,
> that you should treat an illness by suppressing the immune system.  

yeah, but these auto-immune disease are strange critters.  I'm hoping the
work out how to "reset" our immune systems so they only attack intruders, not
our own bodies, during my lifetime.  There's been such huge progress in
understanding the immune system in the lasst couple of decades.

It might
> help one thing, but you have to wonder what else it's opening the door to.
> Along the same lines, my ENT reminded me that I need to stop any
> blood-thinner
> medications a week before surgery.  We all know why.  But then I started
> wondering if the same shouldn't be true for immunosuppresants....

ask your ENT specifically about that.  They didn't have me stop enbrel for my
thumb surgery last Jan, but did have me stop at least on week before and
after my liver biopsy in early March.  Had to stop diclofenac (my NSAID) for
both of them.

Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

spodosaurus - 26 Jan 2007 19:00 GMT
>>>     What's IGG?
>> It stands for Immunoglobulin G (IgG), which is one of many generalised
[quoted text clipped - 29 lines]
>  - Sharon
> "Gravity...  is a harsh mistress!"

The type of post surgery problems with infection caused by DMARDs can be
serious. Ask about this soon, please. Some surgeons don't know their
arse from their elbow in this regard. My excellent orthopaedic surgeon
is one of them. He ordered me off cyclosporin before my hip
replacements. The cyclosporin I use does not seriously impact on
post-surgical infections because it alters a different aspect of immune
functioning than the immunosuppressants he's used to seeing: DMARDs.

Regarding the use of immune suppressing medications: If your immune
system is having regulatory problems and is in the process of eating you
alive, I think the risks are worth the benefits. There are all sorts of
mortality risks, many associated with quality of life, that occur with
unchecked auto-immune diseases.

Regards,

Ari

Signature

spammage trappage: remove the underscores to reply
Many people around the world are waiting for a marrow transplant. Please
volunteer to be a marrow donor and literally save someone's life:
http://www.abmdr.org.au/
http://www.marrow.org/

Kelly - 26 Jan 2007 20:00 GMT
Check with your rd and your specialist when having surgery.  Mine had me off
the enbrel for 2 weeks before and 4 weeks after my bladder surgery in case
of infection.

Kelly
Thumper - 26 Jan 2007 21:51 GMT
>Check with your rd and your specialist when having surgery.  Mine had me off
>the enbrel for 2 weeks before and 4 weeks after my bladder surgery in case
>of infection.
>
>Kelly

How did that feel?
Thumper
Kelly - 27 Jan 2007 02:32 GMT
Definitely felt it.  I was off for 15 weeks in total the year before last
for the surgery and then for sinus infections.  Of course I have now been
without a dmard for 1 1/4 years and am barely moving without excruciating
pain what can I say.

>>Check with your rd and your specialist when having surgery.  Mine had me
>>off
[quoted text clipped - 5 lines]
> How did that feel?
> Thumper
Nann Bell - 26 Jan 2007 17:24 GMT
>     Ugh that's horrible!  It reminds me that I'm worried about something
> else:  I occasionally have to cough due to a feeling of congestion in my
[quoted text clipped - 5 lines]
> irritate
> my lungs or bronchia, so I cough more.

are you taking any cough medicine for it?  I find when I'm at that kind of
point, taking some cough syrup with expectorant makes it easier to control
the major coughing fits, but I still cough out what needs to come out.  
And more.  The more I cough, the
> sorer
> it gets in my chest, and it also starts to taste/smell kind of like blood.  
> I
> have to sort of force or psych myself into not coughing because I feel like
> I'm
> just tearing myself up inside.  

you definitely need to talk to a doctor about this!  the sooner, the better.  
Coughing fits are one thing, the bloody taste/smell is quite another.  It
might just be irritated tissues, but it could be a host of more serious
thingss.  Please, don't delay taking it up with a doc.

>     I know that's very wrong, and it worries me, so I'm going to mention
> it to my reumy next time I see her.  I'm also on MTX and I noticed that MTX
> has a rare side effect of causing lesions in the lungs.  
>     But it could be just bacteria from my sinuses migrating down to my
> chest, so I'm trying not to freak out.  But I WILL have it checked.

It kinda depends on where in your chest the cough is coming from.  That
sounds kinda funny I know, but I find I cough from higher up when it's from
post-nasal drip that is draining into my throat and lungs.  Real chest
congestion gets major coughing from the diaphragm and I tend to feel the
congestion in my lungs when I breathe.  (but then, I've been dealing with
allergies and their complications for over 40 years and this is all stuff
I've realized slowly over time!)

I had one major sinus congestion that I tried to ignore and let clear up on
its own because it was during a personally traumatic time.  Big mistake! It
ended up goininto my throat and glands.  When I finally went to the doctor,
the first thing he asked was whether I'd ever had the mumps - my glands were
that congested.  So it's hard to know what the body will do and it's best to
get on top of things when you can.

>     I don't know if I am prone to sinus infections.  I've had them
> occasionally while growing up, and I never had allergies.  I suspect that
> this
> one started from a bad head cold that I had a few years ago.

I used to work with someone who had only a few mild allergies, but was prone
to nasal polyps for reasons no one understood.  They tried every trick the
ENTs knew, but couldn't stop them from recurring.  Ultimately, she just had
to have surgery for them every 18 months or so.  It sucked, but she was
philosophical about it.  Sinuses are strange thingss.  Sure makes you realize
why life expectancies used to be so much shorter!

After having sinus infections every time I turned around when younger, I've
finally gone a number of years without one.  A lot of this is the result of
learning how to keep stuff draining when I'm congested - irrigation and/or
saline sprays, medications, etc.  And I'm off enbrel as soon as I think I'm
getting a virus.  Oh, and I make a point of getting my flu shot every year as
the flu was guaranteed to turn into an infection for me.  I've not had a
single sinus or respiratory infection since starting enbrel, though I have
had a couple of other infections.  So, with you not being historically prone
to sinus infections, I suspect you might be fine on enbrel after successful
surgery.  Just pay close attention to what's going on with your body.

I recently learned I have "moderately low" IGG, though not as low as
DianeW's. What I've read says that sinopulmonary infections are much more
common among people with low IGGs.  Makes me wonder if more of us have that
than is generally suspected.  Probably wouldn't be tested for it unless
doctors were trying to get to the  of some other mystery
Signature

Nann
remove the Gator cheer to email me
Simply the thing I am shall make me live --- William Shakespeare

Sharon - 31 Jan 2007 16:17 GMT
>>     Ugh that's horrible!  It reminds me that I'm worried about something
>> else:  I occasionally have to cough due to a feeling of congestion in my
[quoted text clipped - 9 lines]
> point, taking some cough syrup with expectorant makes it easier to control
> the major coughing fits, but I still cough out what needs to come out.  

    Nope, but I've been taking Mucinex on the theory that it will help
clear my sinuses.  It seems to loosen them up a bit.  

> you definitely need to talk to a doctor about this!  the sooner, the better.  
> Coughing fits are one thing, the bloody taste/smell is quite another.  It
> might just be irritated tissues, but it could be a host of more serious
> thingss.  Please, don't delay taking it up with a doc.

    Yep, I know, it definitely sounds serious.  It's kind of odd that it
happens only occasionally. Once my chest feels cleared out, then I stop
coughing, just like normal.  But the taste/smell is wrong, so it will be looked
at.

> saline sprays, medications, etc.  And I'm off enbrel as soon as I think I'm
> getting a virus.  Oh, and I make a point of getting my flu shot every year as
[quoted text clipped - 3 lines]
> to sinus infections, I suspect you might be fine on enbrel after successful
> surgery.  Just pay close attention to what's going on with your body.

    Will do, thanks.  I'm not taking my embrel yet, but am doing the
once-a-week MTX (pills).  With once-a-week drugs like these, I wonder if it's
even possible to stop them "in time" to let an infection clear.  They obviously
stay in your system for a few days or a week.  
    Well, I admit that sometimes I wonder too much.  :-)

- Sharon
"Gravity...  is a harsh mistress!"
spodosaurus - 25 Jan 2007 12:13 GMT
>     As I've posted here a few times, I'm fighting to clear out a chronic
> sinus infection so that I can start taking Enbrel.  I had a followup with my
[quoted text clipped - 19 lines]
>  - Sharon
> "Gravity...  is a harsh mistress!"

Hi Sharon,

It's not so much a 'side effect' of Enbrel as it is being 'too much of a
good thing'. Enbrel dampens immune-mediated inflamatory responses in RA,
but it does this to ALL immune-mediated inflamatory responses. As such,
the connective tissue beneath an epithelium, such as that lining the
sinuses, doesn't get proper inflamation when there's an immune response
in there and the inflamation does not occur, the body is less able to
get the cells in there to take care of the infection, and sinus problems
get out of hand (sometimes seriously so). There's no garauntee that this
won't happen with other DMARDs as well.

Regards,

Ari

Signature

spammage trappage: remove the underscores to reply
Many people around the world are waiting for a marrow transplant. Please
volunteer to be a marrow donor and literally save someone's life:
http://www.abmdr.org.au/
http://www.marrow.org/

Harvey R. Stone - 25 Jan 2007 14:21 GMT
>> As I've posted here a few times, I'm fighting to clear out a chronic
>> sinus infection so that I can start taking Enbrel.  I had a followup with
[quoted text clipped - 35 lines]
>
> Ari

Well said and the way it is in my world.  Sometimes in life we have to make
choices and there may be problems with either choice.   We can not only
think of a side effect while some form of RA marches on which kills a person
also.
Harv
Harv

Rate this thread:






 
Sign In
Join
My Latest Posts
My Monitored Threads
My Blog
My Photo Gallery
My Profile
My Homepage

Start New Thread
Enable EMail Alerts
Rate this Thread



©2008 Advenet LLC   Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.