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Medical Forum / Diseases and Disorders / Arthritis / November 2005

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Enbrel experiences, does it lose it's effectiveness?

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Sunny52 - 14 Nov 2005 18:40 GMT
Just wondering if others are experiencing similar problems with Enbrel.
I have been on Enbrel for 10 months, and this past weekend I
experienced a major flare.  This is the first major flare since I
started Enbrel.  Is it possible it is losing it's effectiveness?  I was
doing fine with Celebrex added to the mix, but just recently went back
on Mtx.

Has anyone else experienced a similar response, and if so, did you
switch to another biological drug?  Was the response immediate?

I'm waiting for a call from my RD, but I would like to be armed with
choices before I make a decision.

Thanks.
Diane - 14 Nov 2005 21:53 GMT
hi sunny,
please see the response i just posted under the I"M SICK OF IT thread.

diane
Sunny52 - 14 Nov 2005 22:20 GMT
Thanks, Diane.  I have my answer.  I have not experienced this kind of
pain in over 20 years.  I am still waiting for my RD to call back.
I'll write again after I speak with him.

I hope you also find relief real soon.  I too am sick of being sick and
dealing with this disease.  Sleep is something I did before arthur
entered my life.

Bonnie
Alix M. Hall - 15 Nov 2005 01:55 GMT
I know my enbrel helps because I know what I am like when I have to be off
of it for an infection.....that being said--I am not pain free--there is
nothing that can mend the damage done with 30+ years of this disease--RA
takes its toll--and then you add in the fibro--and etc and so on and so
forth---but I have found a balance--with enbrel, pred and mtx and paxil for
pain control (don't ask me how but it does help) and the odd assorted
cortisone shot and my pool walking and my resting vs. working ratio--I have
had meds stop working before--and we just had to try different combos until
something does work--sometimes I feel like I am juggling swords or spinning
plates and if it gets off balance, oh boy--but I work very hard to keep it
on balance--but enbrel the wonder drug that cures all ills---NOT!!

Signature

Love,
Alix

"We are all pencils in the hand of God."  ~Mother Teresa

Sunny52 - 15 Nov 2005 03:49 GMT
Thanks for the insight, Alix.

Bonnie
Harvey R. Stone - 15 Nov 2005 12:03 GMT
> Just wondering if others are experiencing similar problems with Enbrel.
> I have been on Enbrel for 10 months, and this past weekend I
[quoted text clipped - 10 lines]
>
> Thanks.

Hi Sunny,     Please look at it this way,,,,,, you are so lucky to of gone
10 months without a flare.   It is normal to a small flares while using
Enbrel.   It is something to talk to your RD about to make sure the doc is
informed about what is taking place.
   I have been using Enbrel for a long time and it is just as good now as
it was in the beginning.   In fact,,, I have not had a steroid shot or used
prednisone in over a year.   The last shot was to calm down some rib
cartilage in my back.
Harv
Charrlygrl1 - 15 Nov 2005 13:23 GMT
Sunny,
I know exactly how you feel, I truly do.
I hope that your RD has some options for you. LOL-please let me know
what they are,
Charlene
Sunny52 - 15 Nov 2005 20:22 GMT
My RD gave me the option of taking prednisone, but I have chosen
another course.  If this does not work, I will most likely reconsider.

Bonnie
Sunny52 - 15 Nov 2005 20:18 GMT
You're right.  I have gotten small flares, which I expected, but this
was a major flare.  Right now I'm choosing heat, rest and pain meds as
needed.  My RD feels the Mtx (I just increased dosage) needs some time
to work it's magic.

Glad to know Enbrel works for you.  May it continue to do so.

Bonnie
RoseB - 15 Nov 2005 14:45 GMT
I have been off the enbrel because of my sinus infection. I am now on
my second course of amoxicillin and clavulinate, and actually think my
voice is improving a bit.  But I have had a great deal of leg pain and
a mini occurence of the evil foot thing that I got regularly while on
remicade. I am tempted to take a pred pulse, but part of me wants to
wait to see if I can start to improve without it. After the last few
years of high dose pred, I don't want to get back on the roller
coaster too quickly.

But last night I was in tears, and a few threatened to come out this
am. I am just too damn stubborn to give in though so staying home from
work is not an option.
    Rose   @}>->--
    Being educated means that rather than fearing the unknown, one seeks to understand it. RB

    Please remove "Ima" to reply.
Sunny52 - 15 Nov 2005 20:28 GMT
Oh Rose, sorry to hear this.  I really hope the infection clears
quickly so you can get back on Enbrel.  I too was close to tears.  I
have been averaging 2-3 hours of sleep a night, and the pain seems most
intense after the sun goes down.

Bonnie
Squirrely - 17 Nov 2005 03:01 GMT
Rose,

Sweetie, I am so sorry to hear this, I feel for you. My heart goes out to
you. I wish things were different for you and that you would improve and
stay improved.

I wish I were there to hold you and hug you and comfort you.

Signature

Love and hugs to all
Good thoughts coming your way too.

Squirrely Jo

>I have been off the enbrel because of my sinus infection. I am now on
> my second course of amoxicillin and clavulinate, and actually think my
[quoted text clipped - 13 lines]
>
>     Please remove "Ima" to reply.
Kelly - 17 Nov 2005 03:45 GMT
Rose,
Sorry to hear this - I would encourage you to get one of those personal
vaporizers or whatever they are - the small vicks ones.  Must admit it was
helping the sinus garbage.  Worth a try.

I sure wish they could figure out what that evil foot thing is.  the sooner
it goes away the better.

Hugs,
Kelly
>I have been off the enbrel because of my sinus infection. I am now on
> my second course of amoxicillin and clavulinate, and actually think my
[quoted text clipped - 13 lines]
>
>     Please remove "Ima" to reply.
RoseB - 17 Nov 2005 05:54 GMT
>I sure wish they could figure out what that evil foot thing is.  the sooner
>it goes away the better.
I have not had this since last March when I stopped remicade. This
time it did not develop the way it has in the past, but I did have a
lot od pain and inflammation around the tendons and so on. Otherwise,
it just feels like a bad flare only the significant pain is not the
joints but rather the connective tissue around them. Anyway enough
about me.

My mom called tonight and said that she had seen her doc this morning,
and that her BP had gone very low as a result of her BP meds and the
fact that she had been changing meds. She complained of weakness and
dizziness. I did not know what to tell her so told her maybe having
something salty would help bring up the BP and otherwise she would
just have to wait it out, About a half hour later my sister called,
and said we' d better go over and see. To make a long story short- she
passed out when we were there- I called 911, she was taken to hospital
and now is on her way to Kamloops the closest city where she will have
a pacemaker installed. Her BP was 80/40 and her pulse was averaging
between 30 and 40 bpm after the medication.
They had to bring in the advanced life support ambulance from Kamloops
because they can not transport anyone with LOC in a regular ambulance.
My oldest sister came as well too although she is barely walking
because she still have infection following the THR.

Middle sister will drive over to Kamloops in the morning. Basically
nothing we can do tonight and the road is not that good.

So I am not too worried about myself.

We are  wondering why her doc let Mom go back home on her scooter this
morning if her BP was so low.

    Rose   @}>->--
    Being educated means that rather than fearing the unknown, one seeks to understand it. RB

    Please remove "Ima" to reply.
Alix M. Hall - 17 Nov 2005 13:54 GMT
Rose--gentle hugs and prayers also prayers for your mother and your family
caring for her--(sigh--how the plate overflows--sigh again)  {{{{{Rose}}}}}

Signature

Love,
Alix

"We are all pencils in the hand of God."  ~Mother Teresa

RoseB - 17 Nov 2005 14:33 GMT
>Rose--gentle hugs and prayers also prayers for your mother and your family
>caring for her--(sigh--how the plate overflows--sigh again)  {{{{{Rose}}}}}
Thanks, Alix.

    Rose   @}>->--
    Being educated means that rather than fearing the unknown, one seeks to understand it. RB

    Please remove "Ima" to reply.
Kelly - 17 Nov 2005 17:11 GMT
Damn!  Good thing you and your sister were there.  you take care Rose - too
many things happening.

Will check the newsgroup tonight to see what is happening.

Kelly

>>I sure wish they could figure out what that evil foot thing is.  the
>>sooner
[quoted text clipped - 35 lines]
>
>     Please remove "Ima" to reply.
shenmei9@aol.com - 17 Nov 2005 19:31 GMT
prayers for your mom, you and family-

m
Gwen Love - 18 Nov 2005 00:47 GMT
Rose, so sorry to hear of your mother's problems now.  Surely hope the
pacemaker will make a big difference.
Also hope your sister's hip soon heals and that your evil foot thing will
just disappear for good.
Gwen

>>I sure wish they could figure out what that evil foot thing is.  the
>>sooner
[quoted text clipped - 35 lines]
>
>     Please remove "Ima" to reply.
shenmei9@aol.com - 15 Nov 2005 17:06 GMT
Sunny,
Just a thought...

I used to love winter here in California when it rains but
post-arthritis, I hated the winter.  I would always get much worse in
the winter. then I started the biologics beginning with humira. I had a
slight flare even on humira  in November of my first year.  Last year
had a flare that started in November (I do not flare usually).   I
bought a SAD light, used it a week, flare went away.  I then started
finding a number of small studies using light therapy with autoimmune
diseases.

Oh by the way, I was on enbrel last year and this year, rather than
humira.  So started a flare about a week ago, pulled out the light and
am now not flaring.  Something to think about.

When I get time, I'll try to find some of those studies.  Had them in a
folder but don't have that computer so I'll have to look for them
again.

M
Sunny52 - 15 Nov 2005 20:29 GMT
Hmmmmm....  You may have something there.
Bonnie
Charrlygrl1 - 15 Nov 2005 21:03 GMT
Sunny,
I wanted to see how long you have been back on the MTX and at what
dosage.
My story is as follows: took a long time to get diagnosed-wrists
started bothering me around Jan 03. In April 03 started seeing an RD,
started DMARDS, NSAIDS.
I was on MTX at that time, but taken off of it after 2.5 months as it
seemed to be doing nothing.  Went that whole route for quite a while.
In June of 04, started the Enbrel. Some improvement, not much. Fired
two RDs, started seeing my new one May 05. In May my new RD started me
on MTX again. I slowly worked my way up to 8 pills per week. At first,
at the 20mg/wk dosage I was feeling some relief...especially in my
feet(the balls and heels both were bothering me badly). I take the MTX
on Weds night, and Thursday morn my feet were much better. After about
3-4 weeks at that MTX dosage, my
feet/ankles/hands/shoulders/wrists/knees/hips would start hurting
around Sunday night. (I take Enbrel on Saturday).
I am wondering if anyone else's MTX seems to wear off early. I don't
know if the Enbrel is working for me at all. I am almost too afraid to
discontinue it for fear of how my body will react.
Like you, my pain also ramps up at night. I thought perhaps that it was
because I am working during the day, and I am distracted? But my ankles
swell pretty good at night, and the left one turns bright red and gets
very hot. My wrists ramp up at night as well...which seems weird since
I am typing all day...but at night every little movement makes me gasp
or cry out. I wake up all night long if I try to sleep without my
braces. I tend to curl up my hands/wrists oddly at night.
Anyway, what has been your experience with the MTX? Does your RD feel
that the Enbrel may be losing it's oomph? I would be interested to hear
how you make out.
I didn't mean to hijack your thread...just thought the symptoms and the
meds seemed very similiar to mine.
\~/  Here's to both of us, may we find a solution soon,
Charlene
Harvey R. Stone - 16 Nov 2005 02:19 GMT
> Sunny,
> I wanted to see how long you have been back on the MTX and at what
[quoted text clipped - 14 lines]
> around Sunday night. (I take Enbrel on Saturday).
> I am wondering if anyone else's MTX seems to wear off early.

You and your RD should work together while watching your bloodtests to get
the amount of Methx you take up enough to last all week.    Another thought
might be to add Arava to the Methx you take.   Some people have been able to
lower the amount of Methx taken each week after Arava has kicked in and it
can be taken in two different sizes.
    Its all about what it takes to control your immune system while keeping
your liver happy.   If I were taking Arava and Methx again,,, Milk Thistle
would be taken also because I could not get above 20 mg by shot without my
liver enaymes beginning  to move up.
Harv

I don't
> know if the Enbrel is working for me at all. I am almost too afraid to
> discontinue it for fear of how my body will react.
[quoted text clipped - 12 lines]
> \~/  Here's to both of us, may we find a solution soon,
> Charlene

Charlene,,,, Please make a copy of your own post and hand it to your RD.
Harv
Sunny52 - 16 Nov 2005 14:34 GMT
Hi Charlene,

No, you did not hijack my thread.  We all learn from one another by
sharing experiences.

I have been on and off Mtx for over 20 years.  I started taking it
before it was FDA approved for treatment of RA.  The first time it was
like a miracle drug and worked almost immediately.  I took it for
approx. 5 years and had to go off of it because my LFT's were abnormal.
I have been on a maximum dosage of 20mg (8 pills) to 7.5mg.  The best
outcome was when I started Mtx. injectables (1999), but when it became
unavailable last year I switched back to pills.

Over the years I have been on and off Mtx depending on blood test
results.  I have been taking Celebrex for years now and always
supplemented X-tra strength Tylenol for pain.  Until last week Tylenol
was enough to take care of the pain.

When I started Enbrel 10 months ago it worked almost immediately.  I
was taking 20mg Mtx., but I gradually started tapering the Mtx. until I
went off of it two months ago (my decision).  I thought the Enbrel was
doing a fine job, so I didn't need the Mtx. (against dr's advice).
About one and half weeks ago I started noticing swelling in my hands,
feet, ankles, and my shoulders were sore.  My shoulders were the first
joints to become affected by RA, and the pain felt just as intense as
it did over 20 years ago.  Most of this appeared at night, so I thought
it was due to activity.  I decided to start the Mtx. again, but it was
too late.  The flare started with a vengeance less than a week ago, and
the pain was so intense I felt sick (first time since RA appeared in
1983).

Now that I am writing this I know I brought this on myself, but I
thought the honeymoon with Enbrel would last forever.  My RD does not
feel the Enbrel has stopped working, but feels I rebounded because I
stopped taking the Mtx.  I don't think he's very happy with me right
now.

I have always been anxious about taking Mtx. because of it's toxicity,
I get mouth sores, and it makes me quite sick for 1-2 days after I take
it.  I have tried every trick (and OTC's) to try to get rid of the
nausea and mouth sores, but nothing seems to help.  I now notice how
quickly I jumped to blame this on Enbrel.  I guess I thought Enbrel
alone could give me the relief I need.  <Sigh>

The pain is now slightly less intense.  I am still taking Celebrex,
using heat, rest and a pain med.  Standing in a hot shower with the
water on my shoulders also helps, but I can't stay in the shower all
day. lol  This coming weekend I'll take my next dosage of Enbrel and
Mtx.  Perhaps next week will be better.

I have always refused to take steriods in the past, but I may have to
reconsider.

Thanks for sharing your story.  I pray you find your magic treatment
and get the relief you need!

Yes, may we find a solution for all of us who suffer from this
horrendous disease!
Bonnie
Diane - 16 Nov 2005 15:24 GMT
sunny, the flare is almost certainly from stopping the ,tx. i take
arava with remicade (and i also did with enbrel). i, too, thought the
enbrel or remicade would be enough because i was doing so well. i
halved the dose of arava (with my doc's blessing) and in a few weeks, i
felt as tho i was right back where i'd started. it's very discouraging
when we realize we are still so sick--that it's only the meds keeping
the symptoms at bay.

i had problems with nausea etc from mtx and switched to arava. could
you discuss that option with your doc? maybe you could tolerate it
better.

diane
Sunny52 - 16 Nov 2005 16:17 GMT
Diane, I have already tried Arava and had to stop it after a short
course due to my elevated LFT's.  I stopped it for a month, and went
back on it (dr's advice), but one month later the results were the
same.  That is when he suggested Enbrel.  He did say that Enbrel is
usually taken in combination with Mtx, but not always.  I really
thought I could "get away with" taking just Enbrel.
I have learned my lesson....  I hope!
Bonnie
Charrlygrl1 - 16 Nov 2005 18:52 GMT
Sunny,
One quick suggestion (and thanks so much for replying!),
My Rd prescribed me leucovorin. It is a folic acid derivative taken
8-12 hours after
the MTX. It helps fight the more serious side effects of MTX (in my
case hair loss and mouth sores). It definitely has eliminated the mouth
sores completely for me, and it also has slowed down the hair loss by
quite a bit. I can tell because this week I forgot to take it (I keep
the pills near the coffee maker so I will be sure to take it in the AM
the day after the MTX, and last week, I went out for coffee-therefore
forgot the damn pills!), and when I washed my hair on Saturday my hair
actually clogged up the drain in my shower completely. I was totally
freaking out.
I hope that you and your RD can come up with something to make things a
little better for you. I totally understand how you can't stay in the
shower....LOL, if I could, I would too!
Thanks again,
Char
One other thing... I have read from people elsewhere that when they
stopped taking the MTX and then restarted it at a later time it was not
as effective as it was the first time. I wonder why that is?
So anyway, maybe you could ask your doc re: the leucovorin? It has
really helped me.
Sunny52 - 16 Nov 2005 22:10 GMT
Thanks, Char.  My RD said he would call in a script for 10mg
Leucovorin, but did not (I checked last night).  I will call tomorrow
and gently remind him.

I really hope the Mtx. is effective, in fact, I counting on it!

Bonnie
Alix M. Hall - 17 Nov 2005 13:58 GMT
Sometimes the combo of Enbrel and MTX gives the best result--that is what
some studies have shown--Right now I am on enbrel, MTX and pred--low dose
pred because I have been on it forever and can't get off--sigh--but  all in
all it is better than before enbrel--I might add that every time I try to be
my own doc and go against his suggestion, I have regretted it--I just hate
taking all this stuff--but.....

Signature

Love,
Alix

"We are all pencils in the hand of God."  ~Mother Teresa

Squirrely - 17 Nov 2005 03:05 GMT
Sunny and Charlene,

I just wanted to let you know I was thinking of you both. Sending lots of
hugs your way and healing vibes also. I hope you both find something that
really works well for you.

Signature

Love and hugs to all
Good thoughts coming your way too.

Squirrely Jo

> Sunny,
> I wanted to see how long you have been back on the MTX and at what
[quoted text clipped - 30 lines]
> \~/  Here's to both of us, may we find a solution soon,
> Charlene
Sunny52 - 18 Nov 2005 13:21 GMT
Thanks, Jo!  How are you doing?

Thoughts and prayers coming your way also.

Bonnie
Squirrely - 18 Nov 2005 15:58 GMT
Your welcome Bonnie. I have been missing you when you don't post much.

As to your question. I am going to try to make it short. I am not doing good
at all. I had virus/flu that lasted for months now. Get better for a day or
two and it comes back. Dehydration problems still an issue. Now don't even
know if we can make next months rent. Woke up this morning with a swollen
mouth. I think I have an infected tooth. No money. So that is life. Jim is
working but not enough hours and enough pay.

I bet you are really glad you asked. Not! ;-(

Signature

Love and hugs to all
Good thoughts coming your way too.

Squirrely Jo

> Thanks, Jo!  How are you doing?
>
> Thoughts and prayers coming your way also.
>
> Bonnie
Sunny52 - 18 Nov 2005 17:55 GMT
Oh, Jo, I am really sorry to hear about these latest problems.  If it's
not one thing, it's another. Right?!

I think of you often, and hope things will get better for you.  I still
have the card you sent me last year!

And, I am really glad I asked, I care.

Bonnie
Squirrely - 18 Nov 2005 20:44 GMT
Thank you Bonnie,

Can you email me, I cleared out all addies one day and lost your email addy
from that. I was worried I was sending a virus. But found out later I
wasn't. ;-)

I feel so terrible. I have a feeling I am going to have to get to a dentist
to take care of this but with no money I don't know how the heck we are
going to do that.

Signature

Love and hugs to all
Good thoughts coming your way too.

Squirrely Jo

> Oh, Jo, I am really sorry to hear about these latest problems.  If it's
> not one thing, it's another. Right?!
[quoted text clipped - 5 lines]
>
> Bonnie
Mary Z - 17 Nov 2005 04:11 GMT
>I am wondering if anyone else's MTX seems to wear off early. I don't
>know if the Enbrel is working for me at all. I am almost too afraid to
>discontinue it for fear of how my body will react.

That used to happen to me so my RD upped the dose  I have been as high
as 38 mgs of mtx. Note that some new drugs will likely be available
next year and they look good for folks who are not responding well to
anti-tnf. Orencia (abatacept)  should be out soon it was approved by
the FDA advisory panel and they are just waiting for the final full
approval.   Should be out early in 06.   Rituxan is also fairly close
there was an October 31 announcement that FDA would give the drug
piriority review which means a decision in 6 months.   It is also a
good one for Anti-tnf non responders, so don't lose hope there are
several more in the pipeline some very soon!   I failed many until
Remicade put arthur to sleep.  

This is from Yahoo news:

NEW YORK (AP) -- Biotech companies Biogen Idec Inc. and Genentech Inc.
said Monday that the Food and Drug Administration will a grant
priority review for their drug Rituxan to treat rheumatoid arthritis,
while shares of Biogen got an added lift from an analyst upgrade on an
anticipated drug reintroduction.

Shares of Biogen rose $2, or 5.2 percent, to $40.49 in afternoon
trading on the Nasdaq. Shares plummeted from a 52-week high of $70 in
February after the company pulled the rheumatoid arthritis and
multiple sclerosis treatment Tysabri from the market over fears of a
rare brain disease, eventually hitting a 52-week low in June of
$33.18. Biogen marketed Tysabri along with Elan Corp. Biogen shares
are down 39 percent so far this year.

The FDA's priority decision on Rituxan means the agency will make a
decision about the rheumatoid arthritis indication within six months
instead of the standard ten months. This follows on an announcement
last week that Rituxan received priority review to treat cancer of the
immune system. Biogen and Genentech are seeking approval to treat
patients with rheumatoid arthritis, an inflammatory disorder, who have
not responded to other therapy.

Visit my website:
http://www.mzuschlag.com
Squirrely - 17 Nov 2005 03:03 GMT
M,

thanks for sharing that.

I have sads and autoimmune issues. I am going to try the light therapy since
you mentioned it. Thanks.  Didn't know you would help others saying that did
you. But you are.

Signature

Love and hugs to all
Good thoughts coming your way too.

Squirrely Jo

> Sunny,
> Just a thought...
[quoted text clipped - 17 lines]
>
> M
Charrlygrl1 - 17 Nov 2005 13:53 GMT
Thanks Mary!  It's hard to keep your hopes up sometimes, but what other
choice do we have?
Char
 
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