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Medical Forum / Diseases and Disorders / Arthritis / May 2006

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Enbrel problems

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Bob - 17 May 2006 13:15 GMT
I have been on a combination of Enbrel and Methotrexate for about a year
now. My rheumatologist monitors me closely with a full blood workup once a
month.  Over the last few months I have gotten more and more colds and
minor infections.  Two weeks ago I came down with cellulitis in my eye and
face.  My RA doc removed me from the injections imediately.  I was sent to
an eye doc who prescribed amoxicilin for me.  The amox caused me to break
out from head to toe with a nasty rash.  They then switched me to Zpak
which has cleared up the infection and the rash went away after a few days.  
It has been a bad experience for me and my RA doc will not let me continue
with the Enbrel and MTX combo.  He now wants to switch me to LEFLUNOMIDE
10MG TABLETS.

I read the pharmacy info on it and find one thing that is a little scary.  
It says "THIS MEDICINE MAY LOWER YOUR RESISTANCE TO INFECTION. Prevent
infection by avoiding contact with people with colds or other infections.
Do not touch your eyes or the inside of your nose unless you have
thoroughly washed your hands first. CHECK WITH YOUR DOCTOR BEFORE HAVING
IMMUNIZATIONS (VACCINATIONS) for up to 2 years after stopping this
medicine. If you develop a serious infection, your therapy may need to be
stopped and you may need to complete the elimination procedure."  

I was getting colds and infections on the Enbrel/MTX but this stuff sounds
very persistant and seems to remain in your system for a long time after
stopping it.  I am really scared of infections after this bout with
cellulitis.  It was terrible.

Does anyone who reads this list have any experience with this medication?  
Charrlygrl1 - 17 May 2006 16:35 GMT
Bob, I have experience with both Enbrel and MTX, but not Leflunomide.
I just wanted to tell you to hang in there and good luck!
Char
Joan Carter - 17 May 2006 17:44 GMT
>I was getting colds and infections on the Enbrel/MTX but this stuff sounds
>very persistant and seems to remain in your system for a long time after
>stopping it.  I am really scared of infections after this bout with
>cellulitis.  It was terrible.
>
>Does anyone who reads this list have any experience with this medication?  

I can't help you with that but I strongly reinforce your desire to move
carefully with this. Start with your doctor. Good luck.
---
Joan
Gary & Ellie - 18 May 2006 01:26 GMT
>He now wants to switch me to LEFLUNOMIDE
10MG TABLETS.
Does anyone who reads this list have any experience with this medication?

Bob,
I have been on Leflunomide, another word for Arava, for about a year now
with no problems.  I also take 10 mgs.  I am also on remicade and
methotrexate, and seem to be side affect free.  (knock on wood)
Hope this helps.
Ellie
Bob - 18 May 2006 02:07 GMT
Gary & Ellie <gary.and.ellie@gmail.com> wrote in news:58OdnZ9JzrmDIvbZRVn-
pQ@giganews.com:

>>He now wants to switch me to LEFLUNOMIDE
> 10MG TABLETS.
[quoted text clipped - 6 lines]
> Hope this helps.
> Ellie

Thank you Ellie and everyone else.  My concern is the long time that
leflunomide/Arava stays in your system.  I read somewhere that it is months
or even years after you stop taking it.  That doesn't give much flexibility
if you get an infection.  I guess I am just gun shy after my recent bout
with cellulitis.  It was pretty hard on my system.
Nann Bell - 18 May 2006 13:59 GMT
> Thank you Ellie and everyone else.  My concern is the long time that
> leflunomide/Arava stays in your system.  I read somewhere that it is months
> or even years after you stop taking it.  That doesn't give much flexibility
> if you get an infection.  I guess I am just gun shy after my recent bout
> with cellulitis.  It was pretty hard on my system.

I've ben on Arava in the past.  The advice about resistance to infection
being lowered is applicable to ALL the DMARDs for arthritis.  The reality is
that DMARDs work by interfering with the action of the immune system and that
also lowers its ability to fight off other stuff.  But........ enbrel and
arava work by different mechanisms, affecting different parts of the immune
system's response.  So it is quite possible that individuals who are
particularly susceptible to infection with one of these DMARDs will not be as
suceptible under a different one.  

It's a bit scary, true, but it is the reality.  Also, I don't think arava
leaves one any more susceptible to infection than mtx does - and if you are
on arava, you most likely will not be on mtx as well - very few of us have
taken that combo as it's really rough on the liver.  So, you would be on only
one DMARD rather than the 2 you have been on so there will be only one med
interferring with your response to infection.  (I hope I'm making sense!  My
coffee has entirely kicked in yet.)

Meanwhile, the fact that they now know to avoid amoxicillin with you should
make any future battles with infection less torturous!  And should you get
really ill, there is a medication they can give you to clear the arava from
your system.  But when I stopped it for brief periods for viruses, I
definitely noticed that the bulk of its effect faded quickly so it doesn't
seem to stay at full force in your body for all that long.  Still, it will be
important to pay attention to any signs of infection of stop it when
something hits and get in to a doctor quickly should you think you need
antibiotics.  'Tis a pain, indeed.

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Bob - 19 May 2006 11:33 GMT
>> Thank you Ellie and everyone else.  My concern is the long time that
>> leflunomide/Arava stays in your system.  I read somewhere that it is
[quoted text clipped - 14 lines]
>
> It's a bit scary, true, but it is the reality.  ............But when I
stopped it for brief
> periods for viruses, I definitely noticed that the bulk of its effect
> faded quickly so it doesn't seem to stay at full force in your body
> for all that long.  Still, it will be important to pay attention to
> any signs of infection of stop it when something hits and get in to a
> doctor quickly should you think you need antibiotics.  'Tis a pain,
> indeed.

Thanks Nann for your really thoughtful and logical response.  Thanks to you
too Becky for sharing your experience and for your support.  Yeah, it is
the proverbial, "between a rock and a hard place."  The longer I wait
before starting the new therapy the more RA reminds me that I must do
something.  As my GP said yesterday when I discussed it with him, he just
happened to call me on another item, it is a quality of life issue.  What
are you willing to live with.

Sounds like the Arava leaves your system fairly rapidly after cessation up
to a point but then the residuals are there for quite a while.  I guess
that is my biggest fear having just been through an infection.  Again,
thanks to all for you responses.  The more I know the better off I am in
coping.
Becky - 18 May 2006 01:49 GMT
Bob
Just want you to know that I can relate to you, I also have taken mtx and
enbrel and am off both right now due to either sinus infection or allergy
really bad.
Good luck
+Becky
>I have been on a combination of Enbrel and Methotrexate for about a year
> now. My rheumatologist monitors me closely with a full blood workup once a
[quoted text clipped - 24 lines]
>
> Does anyone who reads this list have any experience with this medication?
Baino - 20 May 2006 00:51 GMT
Hi Bob, just to let you know I'm on 20mg of Leflunomide daily (have been now
for 3 months)and its being used in combination with Rituximab, this is an
untested combination and I'm a sort of a guinea pig and so far all is well.
I'm having my second infusion of Rituximab next friday. I've tried enbrel,
humira and infliximab as well as methotrexate and sulphasalazine and all
failed to work and give me relief from RA. Got to try something new and move
forward with my life instead of the usual daily grind. As far as I've been
told you can be given medication which flushes the drug leflunomide
completely out of your system when stopping but I guess its up to each
consultant as to whether they choose to do so.I would also like to add that
the pharmacy information is a worst case scenario and only in extreme cases
causes problems, they're just covering their own backsides in case of
problems. All arthritis drugs lower the immune system and there has to be a
trade off either have a low immune system and not much relief from arthritis
or have a healthy immune system and suffer like hell, I know what I'd chose
everytime. My arthritis is very aggresive and proving very difficult to
control with several joints waiting to be replaced etc.

Robert

>I have been on a combination of Enbrel and Methotrexate for about a year
> now. My rheumatologist monitors me closely with a full blood workup once a
[quoted text clipped - 24 lines]
>
> Does anyone who reads this list have any experience with this medication?
 
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