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 / August 2005

Tip: Looking for answers? Try searching our database.

enbrel question

Thread view: 
Enable EMail Alerts  Start New Thread
Thread rating: 
Becky - 22 Aug 2005 03:50 GMT
I finally got my prescription for the enbrel. Picked it up tonight at the
pharmacy and am supposed to call the doc tomorrow and set up a time for the
nurse to show me exactly how to take it. Very nervous.
I do have a question for those of you who are taking it.  How many of you
have side effects like flu symptoms and sinus problems?
Also how did you know when it was time to advance to this drug. I have taken
MTX up to 17.5 but it caused me some problems since I can't take folic acid,
but do take it in food and it seems to help.  I have gotten a lot of hip
side pain and ankle pain, that I am not totally sure it is the RA.  My hands
and wrists hurt some and I am stiff and always feel like crap in the
morning, by the end of the day like now, though I am feeling better. So my
question is how do I know that I need to add the enbrel?
My doc said to take it cause I am complain about fatigue it was terrible
last week, but once I started downing more foods with folic acid that
helped.  I have had some issues with myshoes and not finding ones to replace
the orthodic or not to, and some hip issues and wonder if I am not making
myself extreme anxiety over the shoe  and hips problems and to eager to
blame it on the RA.
Is enbrel only for those who can't move at all and have constant red and
swollen joints, which I have had, I would hate to start something that has
the potential to be so hard on your system if I don't need it.
I guess you can tell I am scared to death to take it, Iwas just wondering
how others felt when they finally took it>?
Thanks
Becky
Harvey R. Stone - 22 Aug 2005 13:51 GMT
>I finally got my prescription for the enbrel. Picked it up tonight at the
>pharmacy and am supposed to call the doc tomorrow and set up a time for the
>nurse to show me exactly how to take it.

Not me,,,, I know you are nervous about the shot but try not to make up
problems to worry about.  It only makes things worse.

Very nervous.
> I do have a question for those of you who are taking it.  How many of you
> have side effects like flu symptoms and sinus problems?

Not me.

> Also how did you know when it was time to advance to this drug. I have
> taken MTX up to 17.5 but it caused me some problems since I can't take
> folic acid, but do take it in food and it seems to help.  I have gotten a
> lot of hip side pain and ankle pain, that I am not totally sure it is the
> RA.

This is the reason you want to take Enbrel.

My hands
> and wrists hurt some and I am stiff and always feel like crap in the
> morning, by the end of the day like now, though I am feeling better. So my
> question is how do I know that I need to add the enbrel?

Your answering the question yourself but you are not listening.

> My doc said to take it cause I am complain about fatigue it was terrible
> last week, but once I started downing more foods with folic acid that
[quoted text clipped - 5 lines]
> swollen joints, which I have had, I would hate to start something that has
> the potential to be so hard on your system if I don't need it.

I use it to keep from having those things.

> I guess you can tell I am scared to death to take it, Iwas just wondering
> how others felt when they finally took it>?
> Thanks
> Becky

That makes you semi---normal.   I am going to say that you will look back on
this time and wonder what you thought was the problem.

Harv
Kelly Cobb - 22 Aug 2005 15:07 GMT
Hi Becky,

I've used Enbrel for over 4 years now (can't remember whether it's 4 or 5)
and I do have a chronic sinus stuffiness, but luckily haven't had the
infections that go with it.

Enbrel worked wonders on my fatigue within just a short time, like 2 weeks.
Not everyone gets a quick result, though. It may take a couple of months to
get the full effect.

I hope it works miracles for you.

Kelly C.

> I finally got my prescription for the enbrel. Picked it up tonight at the
> pharmacy and am supposed to call the doc tomorrow and set up a time for the
[quoted text clipped - 21 lines]
> Thanks
> Becky
Nann Bell - 22 Aug 2005 15:20 GMT
Becky, I recently told my husband that 10 years ago I could not have imagined
being so *happy* to give myself a weekly shot! I had to wait 3.5 years to get
health insurance good enough to afford Enbrel.  It has not been a miracle for
me, but it has helped enormously.  I was functioning before Enbrel, but not
very well.  I did not look bad, though my RDs knew there was joint swelling
there that never went down pre-Enbrel.

Enbrel really is not bad.  The modern, silicone coated needles slip in very
smoothly so sticking yourself is not traumatic.  The Enbrel itself may sting
going in, but when it does all you have to do is stop for a few seconds until
the stinging subsides, then go on.  It stings less, the warmer it is when you
inject.

I've had no trouble whatsoever with an increase in my sinus problems and no
flulike symptoms from the Enbrel at all.  The opnly way Enbrel has affected
my sinuses has been by giving me the energy to do some gardening and all that
digging in the dirt kicked up the allergies!  But on the flip side, I also
can clean house more often which helps my sinuses.

And what the Enbrel helped me with the most is my energy level.  That has
improved a great deal.  Don't go into this with fear and dread, go into it
with excitement that this marvelous new medication is available to you and be
filled with hope that it will help you as it has helped so many of us.

Signature

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

> I finally got my prescription for the enbrel. Picked it up tonight at the
> pharmacy and am supposed to call the doc tomorrow and set up a time for the
[quoted text clipped - 21 lines]
> Thanks
> Becky
Becky - 22 Aug 2005 17:06 GMT
Thank you all for the responses. My doctor is supposed to call me in about
an hour and I will head up to the town where he is to show me how to do
this. I did notice that on the handout they gave me bursitis is a side
effect, I hope not since I suffer from that already.
I am extremely nervous and worried that I am taking something more than I
need but I guess I will only know if I try and trust God, maybe in the long
road ahead I will look back on this and be able to encourage others and find
out that this isn't so bad after all.
I hope so, will let you know how it goes.
Thanks again
Becky
> Becky, I recently told my husband that 10 years ago I could not have
> imagined
[quoted text clipped - 65 lines]
>> Thanks
>> Becky
Charrlygrl1 - 22 Aug 2005 17:49 GMT
Hi Becky,
I have been on Enbrel for about a year now, a little over.
I have had no sinus problems whatsoever...no side effects at all, to be
honest.
It is not the miracle drug for me that it is for some. I have pain
every day still...but I hate to see where I would be without it!!
For me, as for Nann, above...the fatigue relief occurred within the
first two weeks or so...I was so relieved because, for me, the fatigue
was horrid. I was exhausted all day every day.
I have no problems injecting...though at first I would hover with the
needle poised and my tummy pinched for about a half hour, before I
finally got the nerve to do it.
Now, it's nothing at all. I wouldn't worry about taking something you
don't need...and I'm sure God would want you to try to help yourself,
right??
Take a deep breath, it's going to be fine...and let us know how you
make out, please!
Good luck Becky  ((hug)),
Char
Di - 23 Aug 2005 01:15 GMT
> ... I did notice that on the handout they gave me bursitis is a side
> effect, I hope not since I suffer from that already.
[quoted text clipped - 5 lines]
> Thanks again
> Becky

Becky, from one person who suffered miserably from bursitis, I can tell
you that the Enbrel resolved the problem.  I have psoriatic arthritis,
so I don't have the RA hot joints thing.  PA is quite different, and
between the bursitis and the sacroiliitis, I was misery personified.  
I've been on Enbrel since 2001, and except for a few hip twinges, my
bursitis is virtually gone.  I was unable to walk at times, and suffered
from it for almost 25 years. That's how dramatic an improvement I got
from the Enbrel.  

One thing that the Enbrel seems to not be able to resolve for me is the
achilles tendonitis.  That's the bane of my existence right now.  I
hobble in the morning from the heel/ankle pain, and it hurts on and off
all day long.  I just don't get it.  Neither does my RD or my
podiatrist.  But, I guess ya can't have everything.

All I can say is "don't worry. be happy".  You're gonna be thrilled with
the stuff.  If, for some crazy reason you're not, then you stop taking
it, and none the worse for wear.  

I still take the 25mg/2X week injections, and I will for as long as I
can get it.  I am afraid of the burning from the 50mg prefilled
syringes, but that was because I had such a severe and painful reaction
to the preservatives in the Kineret.  Thank you very much, but I'm happy
mixing the stuff myself.  They can keep the freakin' preservatives.  So,
if you do find those injections particularly painful, ask your doc for
the 25mg Enbrel kits.  A bit more work, but less pain.  You'll have to
find out for yourself.  It's all very individual.

Good luck.  I'm looking forward to your report to the group.  
Signature

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

Navy1 - 23 Aug 2005 14:37 GMT
>> ... I did notice that on the handout they gave me bursitis is a side
>> effect, I hope not since I suffer from that already.
>> I am extremely nervous and worried that I am taking something more than I
<clip>

>One thing that the Enbrel seems to not be able to resolve for me is the
>achilles tendonitis.  That's the bane of my existence right now.  I
>hobble in the morning from the heel/ankle pain, and it hurts on and off
>all day long.  I just don't get it.  Neither does my RD or my
>podiatrist.  But, I guess ya can't have everything.

Becky,
Please consider the possibility of a small tumor on one of the nerves
in your foot - I'm trying to avoid pulling out my medical history for
the term, but guess I will to make sure I am correct...."Neurocyst".
I found the cyst myself - it was a tiny black spot on the sole of my
foot.  They took out a cyst the size of the tip of my little finger!
It was pressing on the nerve, causing it to pull across the bone on
the heel, which is where I felt the pain!  So, if something looks
different or wrong, get it checked out.  This is why it is so
important that we know ourselves, breast exams, included.

Good luck - nothings worse than a pain that no one can do anything
about; that includes the kid next to you in school.  LOL

Loujean
Retired and love it.
Throw that FISH out and
put in an S to email me.
Bob - 23 Aug 2005 02:33 GMT
> I guess you can tell I am scared to death to take it, Iwas just
> wondering how others felt when they finally took it>?
> Thanks
> Becky

Becky,
I was very nervous too when I started the Enbrel.  I have been shooting
up with Enbrel and MTX now for a few months or longer.  I have always
been a little squeemish about shots but have learned that icing the area
before I stick myself helps greatly.  Now, as for the results.  I never
realized what terrible pain I was in the last few years until I started
the Enbrel.  The swelling in my finger joints has gone down, my energy
level is up, and the only bad pain I have left has been in a couple of
finger joints.  I am typing this at about 70 WPM with hardly any pain.  
My doc injected my worst finger joint a couple of months ago with a
cortisone and it shrank to about half its original size and has remained
unswollen.  I am hoping he will do the one remaining next time I see
him.  The Enbrel/MTX combo has worked really well for me.  More
importantly, my doc says that staying on the combination will pay
dividends many years from now because it arrests the further
deterioration of my joints.  I too never imagined that I would look
forward to giving myself shots but I actually do because I know it is
keeping that pain at bay.  The only reaction I get is a bit of fatigue
right after taking the shots which sometimes lasts for about 12 hours.  
Then I am back up to speed again.  I also take over the counter folic
acid two or three times a day.  I just get it from the vitamin section.  
I get the 800 mcd ones.  The MTX is an advesary to folic acid in your
system.  I am lucky because the tip of my tongue is a perfect indicator.  
When my folic acid gets low I get a tiny sore place there.  I pop an
extra folic acid tablet or two and it goes away.  Try not to be too
aprehensive about it although that is natural.  I admit that I still get
a little nervous about the shots but I am getting better at it all the
time.  I can do the MTX shot in a second now.  The Enbrel one takes me a
bit longer because I have to ice the area to make it painless.  Yes, it
will sting a little going in but that stops quickly enough.  Be sure you
warm the syringe to room temperature or body temperature and that will
make it pretty painless.  Most of the problems I had with it were in my
head because I was very aprehensive like you.  Just know that is normal
and go ahead.  You will get more comfortable with it over time.  I hope
this helps.
Becky - 23 Aug 2005 03:23 GMT
Bob, Di, Char and the rest of the good support people here,

THank you SO Much for your words of encouragement and advice.  My doctor
called this afternoon and I am to meet his nurse tomorrow morning at 10 am
and they will go over the shot for me. I have to drive up 40 minutes to his
clinic so they said to make sure the enbrel is in an ice chest, so I have
one.  I hope they let me warm it up to room temperature before doing all
this I will tell them that, and use the ice pack that is int he kit to ice
my leg, stomach or wherever I give it to myself.
I amaze myself I went to nursing school for petes sakes, never finished
money problems, and spend most of my free time watching the health channel
for surgeries go figure.
Anyway I am hoping for good things, I take the mtx now at 15 mg was on 17.5
but can't handle that so he said that the dose would be lowered to 10 with
the enbrel.  I also take plaquenil and naproxen.  I can not tolerate the
folic acid only in small amounts from food, it flares up a bladder condition
that I have, which I hope this enbrel doesn't and I pray I don't gain weight
from it, but that is enough.
I hope that I find out that this was all just silly worry.
Well let everyone know how I do tomorrow evening.
Thanks again for all the great support.
Becky

>> I guess you can tell I am scared to death to take it, Iwas just
>> wondering how others felt when they finally took it>?
[quoted text clipped - 36 lines]
> and go ahead.  You will get more comfortable with it over time.  I hope
> this helps.
Marshall Arbitman - 23 Aug 2005 08:15 GMT
Becky:

Do not worry. Poke the dang needle in your dang body and feel a dang
lot better. The biggest problem, in my experience, with RA sufferers
(myself included) is reluctance to pipe up when we're feeling lousy and
shrinking from pounding the crap out of this disease whenever we can.

Treat it aggressively! That's the state-of-the-art consensus, these
days. Use whatever you can, whenever you can, as often and as much as
you can afford and your insurance company allows.

As for sticking yourself with a needle--you're not sticking yourself in
your eye and you're not giving yourself an IV. Depending on where you
poke, you can feel a little pain or just about none at all. You'll
figure it out. If Enbrel is for you--and it might not be--you will be
so, so very glad you got started. The fatigue will diminish. The
swelling will go down. The aches will abate. Most important. . .MOST
important, you'll be preventing additional joint damage.

Again, Enbrel and you may be a good combination. Or Humira and you. Or
Remicade. JUST DO IT!

> I finally got my prescription for the enbrel. Picked it up tonight at
> the pharmacy and am supposed to call the doc tomorrow and set up a time
[quoted text clipped - 22 lines]
> Thanks
> Becky
Becky - 23 Aug 2005 16:17 GMT
Thanks Marshall,
I am on my way right now to learn how to do the shot.  I hope it works
without side effects we will see.  My biggest pain problem is my hips and
outside knees, which the doc said now he doesn't think is RA, who knows.  As
far as the fatigue, when I wake up in the morning I never felt like I have
even went to bed after sleeping 9hours, is that the fatigue that it helps
with?
Anyway thanks for the encouragement and will let you know how it goes.
Becky
> Becky:
>
[quoted text clipped - 43 lines]
>> Thanks
>> Becky
nikki - 23 Aug 2005 21:30 GMT
Hey Becky, don't worry about the shots, in the end they are almost
addictive ;-)
For me, most ideal is 5mg prednisolon per day and Enbrel 25mg every
forth day.
I am very side-effect prone, but I think other people are mostly okay on
Enbrel twice a week.
I am off it now for a while due to side-effects because I upped the dose
to the usual twice a week shots, to lower the prednisolon to 2,5 mg per day.
I now have to wait for a bit until I'm all okay again, and then I'll
start on Enbrel again.
After almost 5 weeks without Enbrel and trying to cope on just 5mg pred
per day I must say I was kind of okay for the first couple of weeks, but
since a week or so I can feel the difference, and it's not nice.

Hopefully in about 10 days I can start taking Enbrel again.
You'll have to find out what works for you.
I may even try the 50mg shots, already have the prescr.

Good luck and hope it will really work for you!

Nikki

> I finally got my prescription for the enbrel. Picked it up tonight at the
> pharmacy and am supposed to call the doc tomorrow and set up a time for the
[quoted text clipped - 21 lines]
> Thanks
> Becky
Becky - 23 Aug 2005 22:32 GMT
Hi to all,
Well I just got back from the doctors and I DID IT< it really wasn't that
big of a deal like you all said, and I hardly felt the shot was the needle
was in.
So looks like I will take it every Tuesday and the mtx on Saturday, I was
wondering what dosage others take of the MTX when they take it with enbrel.
The only thing I was n't to happy about was I was hoping for some cortisone
shots in my butt or hip, the bones that you sit on are very sore and some in
the side of the hip, the doctor looked at it though and said he didn't feel
that it was bursitis and that I should try physical therapy and see how that
helps. I have had it on going since mid June but guess I can only do what he
says.
Anyway so far no side effects and I took it about 5 hours ago. so I guess I
will be okay for now, they said that I might have some site reaction but
that usually happens with the 2 or 3 shot not on the first time.
Thank you all again for the constant support and now if my hips and butt
bones would calm down I would be great. I am sure it is from not wearing my
orthodics anymore but they were to much of a hassle to find shoes so I quit
and am glad I did.
Thanks so much again
Becky
> Hey Becky, don't worry about the shots, in the end they are almost
> addictive ;-)
[quoted text clipped - 44 lines]
>> Thanks
>> Becky
 
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.