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Medical Forum / Diseases and Disorders / Arthritis / July 2005

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Gord - 27 Jun 2005 20:31 GMT
Hi,
I'm a long time reader of this board and have a new question if anyone
doesn't mind. I've had PA for about 4 years and have been on MTX for 3
years. Sulphasalazine didn't do anything for me. My PA has only shown up in
my right foot area. All toes swollen. Pain is very manageable with one 75mg
voltaren every 2-3 days.
Anyway, my RD says because of the chronic inflammation still going on,
Enbrel would be the next line of treatment.
I would like to know, how people made out with Enbrel. Did it help ? Hurt ?

Thanks everyone
Gord
Sandy Tipper - 28 Jun 2005 00:35 GMT
> Hi,
> I'm a long time reader of this board and have a new question if anyone
[quoted text clipped - 11 lines]
> Thanks everyone
> Gord
I have atypical RA, atypical in that it acts more like PA without the
psoriasis.
In 20some years I had never had a remission, and had both knees and a hip
replaced, both ankles fused, etc. I always had many active joints.
Then came Enbrel. Within a week I started to see results. For 3 years I have
had no active joints (or nearly so), although much of the damage had been
done. Although Enbrel couldn't fix the deformities, I have been relatively
fantastic. If it works as well for you, which it should, you'll feel as if
you
got your life back.
I recommended it to a neighbour who could almost not walk any more,
and she had almost as dramatic an improvement, but for her it took a month
or more to really feel well.

Good luck,
Sandy
Alison DeLorme - 28 Jun 2005 01:23 GMT
it has helped me tremendously. I have been on it since 2001 (on/off /on due
to a pregnancy). I have been very happy with it. I like the single dose
option better than twice a week. I find it works better. However, I will say
that I'm in the process of deciding whether to switch to humira as my RD
feels that the enbrel isn't doing all that it should for me. I still think
she is being a bit unrealistic but I've pretty much decided to at least try
it. good luck with it!
Di - 28 Jun 2005 02:56 GMT
> it has helped me tremendously. I have been on it since 2001 (on/off /on due
> to a pregnancy). I have been very happy with it. I like the single dose
[quoted text clipped - 3 lines]
> she is being a bit unrealistic but I've pretty much decided to at least try
> it. good luck with it!

I have also been on Enbrel since 2001, and it is a god-send.  I do not
walk with a cane anymore, though before, my left hip was so bad, I could
hardly walk without crying sometimes.  It just doesn't seem to be the
answer for my heel pain, which has persisted throughout.  I've asked my
RD when it kicks in for my heels.  He just shrugs, so I've left my heel
problem up to my podiatrist.

My RD wants to switch me to Humira as soon as it's approved for PA,
because I seem to go into break-through flares more frequently now.  I'm
afraid of the preservative in the pre-filled syringes because I find
them to be excrutiating.  My RD said if it's a problem, I'll go back to
Enbrel.  So, I'm in no hurry.  I love Enbrel.  It's a magic potion.
Signature

Di
zinkadoodle at gmail dot com
www.pbase.com/di

Alison DeLorme - 29 Jun 2005 01:54 GMT
>>>I'm afraid of the preservative in the pre-filled syringes because I find
them to be excrutiating.  My RD said if it's a problem, I'll go back to
Enbrel.  So, I'm in no hurry.  I love Enbrel.  It's a magic potion.<<<<

Are you talking about the Humira preservative? I wonder if that's what is
causing the burning in the enbrel signle dose. For me, it's a trade off. The
old style enbrel caused itching and welts - but it lasted 2-3 days. The new
one causes stinging (pretty intense for me. even after 30 minutes at room
temp) but only lasts a minute...

glad the enbrel has helped you. My old RD was the same way, just shrugged
the mild inflammation away. But this new RD wants to try to get it all....
Di - 30 Jun 2005 01:17 GMT
> >>>I'm afraid of the preservative in the pre-filled syringes because I find
> them to be excrutiating.  My RD said if it's a problem, I'll go back to
[quoted text clipped - 8 lines]
> glad the enbrel has helped you. My old RD was the same way, just shrugged
> the mild inflammation away. But this new RD wants to try to get it all....

I've been taking Enbrel since 2001, and I got no site reactions till
only a few weeks ago.  I haven't talked to my RD about it yet.  But, all
of a sudden, out of the blue, and for no good goddamm reason, I now get
a red, itchy welt at the injection site which lasts for at least 3 days.  
I take it twice a week, so my welts overlap in duration.  One subsiding,
and a new one forming.  Oh joy, isn't life grand.  <g>  To those of you
in the know, is this anything I should be worrying about, other than the
discomfort?
Signature

Di
zinkadoodle at gmail dot com
www.pbase.com/di

Alison DeLorme - 01 Jul 2005 04:54 GMT
I would call the RD just to be sure you're not developing some wierd
allergy, since you've never had this problem before. It can be very
frustrating - the welts. My RD kept saying they'd go away, but they never
did. Like you, with the twice a week inj., I'd be just getting over one when
the new one would pop up. I often dreaded the inj, knowing what would come.
I used to get intense itching and 2.5 in welts... But since switching to the
single dose syringe, I've had none. It must be the different preservative.

>>>But, all of a sudden, out of the blue, and for no good goddamm reason, I
>>>now get
a red, itchy welt at the injection site which lasts for at least 3 days.
I take it twice a week, so my welts overlap in duration.  One subsiding,
and a new one forming.  Oh joy, isn't life grand.  <g>  To those of you
in the know, is this anything I should be worrying about, other than the
discomfort?<<<
Harvey R. Stone - 28 Jun 2005 01:25 GMT
> Enbrel would be the next line of treatment.
> I would like to know, how people made out with Enbrel. Did it help ? Hurt
> ?
>
> Thanks everyone
> Gord

Hi Gord,,,   Lots of help for me but I had RA.  I wish that Char was here to
talk PA with you.   IMO it is harder to cotnrol than RA.
Harv
Nann Bell - 30 Jun 2005 14:53 GMT
HI Gord,

I have PA also.  SSZ also did just nothing at all for me.  NO, that's wrong.  
It made my ears ring.  MTX helped some.  We had me on Arava with it for a
while (not a recommended combo due to liver risks, but I had insurance
restrictions at the time).  Late January we were finally able to start me on
Enbrel and drop the Arava.  The first improvement I noticed was in a much
reduced fatigue level.  Still not as good as I'd like - I still need the PM
nap as well as 8 hours at night, but when I'm awake I'm able to accomplish
more.

Then my inflammed ribs (costochondritis) improved *greatly*!  I mean, I can
actually make it through an entire church service, singing all the hymns, and
still be able to talk afterwards!  Hadn't been able to do that in over 3
eyars.  I haven't had improvement past that point yet as I had to go off it
for a month due to other illnesses.  But it has helped enough that I am
actually happy to be giving myself a shot once a week.  (I should note that
my brother is a long standing Type 1 diabetic, so I can hardly complain about
one shot a week!)

The shots themselves do sting some going in.  I just pause for a few seconds
until that improves and then move on with it.  The stinging lessens with
letting the dose warm up more, but you have to find a happy balance between
the stinging and not letting the medicine get too warm to be effective. Also,
I've had some mild shot reactions around the 6-8 week mark, as I was warned I
might.  No big deal, though I do shoot up higher on my thigh with the
reactions now that we're in shorts-wearing weather.  Overall though, the
stinging and reactions are no worse than I've had in the past with allergy
injections and I definitely feel enough better to make it worthwhile!  AFter
waiting 3 years for good prescription insurance so I could go on Enbrel, I am
really appreciating it, even though it hasn't been the total miracle for me
that I'd hoped for.

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Nann
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