Enbrel?

[Sprockets]

Hi All,
I've been doing okay until this past week. Now I am noticing a flare
a day which started over the weekend in my left wrist. My left hip is
sore but nothing unbearable.(right elbow, right hip and both knees are
replaced) My question is - Does Enbrel stop working? I've been on
Enbrel for approx. 4 years. Not long ago I was doing so well I
convinced my Rheumie to let me drop Mtx and I was relatively flare
free for nearly a year. I thought I'd run my question by you all
before I call my Rheumie.

Thanks.
Bonnie

[Harvey R. Stone]

"Sprockets" <[email protected]> wrote in message
news:[email protected]...
> Hi All,
> I've been doing okay until this past week. Now I am noticing a flare
> a day which started over the weekend in my left wrist. My left hip is
> sore but nothing unbearable.(right elbow, right hip and both knees are
> replaced) My question is - Does Enbrel stop working? I've been on
> Enbrel for approx. 4 years. Not long ago I was doing so well I
> convinced my Rheumie to let me drop Mtx and I was relatively flare
> free for nearly a year. I thought I'd run my question by you all
> before I call my Rheumie.
>
> Thanks.
> Bonnie

Yes,,,, it does stop working for some people. It does mean that you need
to restart Methx or Arava or change to one of the other new drugs for
inflam.arth. It is something you and your RD need to work on.... sooner
rather than later.

Harv

[Sprockets]

Thank you Harv.


> Yes,,,, it does stop working for some people. * It does mean that you need
> to restart Methx or Arava or change to one of the other new drugs for
> inflam.arth. * It is something you and your RD need to work on.... sooner
> rather than later.
>
> Harv

[kelly]

Bonnie,
Everyone will at some time still have small flares on any med. A week is
not enough time to decide if it isn't working or not. It could be that you
are just feeling the effects of doing too much last week or perhaps it is a
breakthrough flare.

Don't panic yet. Much to early to alert a rheumie in my opinion. Give it a
week or so and monitor. It could also be that a couple of your doses got
too warm or shaken too much and the flare is the result of a bad batch so to
speak of the med. All sorts of things can affect.

Good to hear it was working so well. I am sure it will continue to -
fingers crossed.

kelly
"Sprockets" <[email protected]> wrote in message
news:[email protected]...
> Hi All,
> I've been doing okay until this past week. Now I am noticing a flare
> a day which started over the weekend in my left wrist. My left hip is
> sore but nothing unbearable.(right elbow, right hip and both knees are
> replaced) My question is - Does Enbrel stop working? I've been on
> Enbrel for approx. 4 years. Not long ago I was doing so well I
> convinced my Rheumie to let me drop Mtx and I was relatively flare
> free for nearly a year. I thought I'd run my question by you all
> before I call my Rheumie.
>
> Thanks.
> Bonnie

[Pope Pie (Sy Lehrman)]

Imagine that, taking Embrel for years!

So far my record is two weeks before all hell broke loose.

[Sprockets]

Hi Kelly,
Your response made me think back to my last shipment. The package was
left on my deck for approx. 2 hours. As it comes packed with gel
coolants I assumed all was okay. Now I am wondering if I should
request a new shipment.
Thanks.
Bonnie








On Mar 20, 7:27*pm, "kelly" <kelly...@shaw.ca> wrote:
> Bonnie,
> Everyone will at some time still have small flares on any med. *A week is
> not enough time to decide if it isn't working or not. *It could be thatyou
> are just feeling the effects of doing too much last week or perhaps it isa
> breakthrough flare.
>
> Don't panic yet. *Much to early to alert a rheumie in my opinion. *Give it a
> week or so and monitor. *It could also be that a couple of your doses got
> too warm or shaken too much and the flare is the result of a bad batch soto
> speak of the med. *All sorts of things can affect.
>
> Good to hear it was working so well. *I am sure it will continue to -
> fingers crossed.
>
> kelly"Sprockets" <bcsprocket...@gmail.com> wrote in message
>
> news:[email protected]...
>
>
>
> > Hi All,
> > I've been doing okay until this past week. *Now I am noticing a flare
> > a day which started over the weekend in my left wrist. *My left hip is
> > sore but nothing unbearable.(right elbow, right hip and both knees are
> > replaced) *My question is - Does Enbrel stop working? *I've been on
> > Enbrel for approx. 4 years. * Not long ago I was doing so well I
> > convinced my Rheumie to let me drop Mtx and I was relatively flare
> > free for nearly a year. *I thought I'd run my question by you all
> > before I call my Rheumie.
>
> > Thanks.
> > Bonnie- Hide quoted text -
>
> - Show quoted text -

[Sprockets]

Sorry it didn't work for you. I guess I was lucky as it began working
after only a few weeks.

I've tried other meds with responses similar to all hell breaking
loose too.




On Mar 20, 10:21*pm, "Pope Pie (Sy Lehrman)" <lao...@spam.cox.net>
wrote:
> Imagine that, taking Embrel for years!
>
> So far my record is two weeks before all hell broke loose.

[Harvey R. Stone]

"Pope Pie (Sy Lehrman)" <[email protected]> wrote in message
news:G3Zwl.187$[email protected]..
> Imagine that, taking Embrel for years!
>
> So far my record is two weeks before all hell broke loose.


Like nearly all medicine for RA,,, different strokes for different folks.
I have been taking Enbrel for what"??? 8 - 10 years and Gloria who was in
the original trials,,,, must be about 20 years. Some people have really
bad reactions to any anti-tnf just like some people have really bad
reactions to Methx or Arava.
Any medicine for inflam.arth. has to be serious stuff dealing with
serious problems,,,,, PA comes to mind. and AS which takes away from a
person slowly and gives back nothing. You are not alone with bad reactions
to Anti-tnf. I have said before,,,,, be afraid of the disease not the
medicine,,, find what works best for you and slow down the disease.

Harv

[kelly]

If your coolants were cold and the weather cool it probably was okay. It is
hard to tell as of course everywhere is different. Personally I wouldn't
want something like that left on a deck. Just the expense gives me a
headache.

Like I say my rd said everyone at some point or another has small
breakthrough flares. If you think about it in life people who have no
arthritis have days they are achy - maybe overdoing it, not pacing, etc. I
would keep an eye on it though - start the old diary of symptoms if you need
to again and yes I would put some controls down with your shipping company
if your shipment is waiting outside for 2 hours again.

Kelly
"Sprockets" <[email protected]> wrote in message
news:[email protected]...
Hi Kelly,
Your response made me think back to my last shipment. The package was
left on my deck for approx. 2 hours. As it comes packed with gel
coolants I assumed all was okay. Now I am wondering if I should
request a new shipment.
Thanks.
Bonnie








On Mar 20, 7:27 pm, "kelly" <kelly...@shaw.ca> wrote:
> Bonnie,
> Everyone will at some time still have small flares on any med. A week is
> not enough time to decide if it isn't working or not. It could be that you
> are just feeling the effects of doing too much last week or perhaps it is
> a
> breakthrough flare.
>
> Don't panic yet. Much to early to alert a rheumie in my opinion. Give it a
> week or so and monitor. It could also be that a couple of your doses got
> too warm or shaken too much and the flare is the result of a bad batch so
> to
> speak of the med. All sorts of things can affect.
>
> Good to hear it was working so well. I am sure it will continue to -
> fingers crossed.
>
> kelly"Sprockets" <bcsprocket...@gmail.com> wrote in message
>
> news:[email protected]...
>
>
>
> > Hi All,
> > I've been doing okay until this past week. Now I am noticing a flare
> > a day which started over the weekend in my left wrist. My left hip is
> > sore but nothing unbearable.(right elbow, right hip and both knees are
> > replaced) My question is - Does Enbrel stop working? I've been on
> > Enbrel for approx. 4 years. Not long ago I was doing so well I
> > convinced my Rheumie to let me drop Mtx and I was relatively flare
> > free for nearly a year. I thought I'd run my question by you all
> > before I call my Rheumie.
>
> > Thanks.
> > Bonnie- Hide quoted text -
>
> - Show quoted text -

[Sprockets]

Hi kelly,
I'll have to alert the shipping company to at least knock before they
leave the package on my deck.
Keeping a pain diary is a great idea. Tonight is shot night so it's a
good time to start.

Bonnie



On Mar 21, 10:27*am, "kelly" <kelly...@shaw.ca> wrote:
> If your coolants were cold and the weather cool it probably was okay. *It is
> hard to tell as of course everywhere is different. *Personally I wouldn't
> want something like that left on a deck. *Just the expense gives me a
> headache.
>
> Like I say my rd said everyone at some point or another has small
> breakthrough flares. *If you think about it in life people who have no
> arthritis have days they are achy - maybe overdoing it, not pacing, etc. *I
> would keep an eye on it though - start the old diary of symptoms if you need
> to again and yes I would put some controls down with your shipping company
> if your shipment is waiting outside for 2 hours again.
>
> Kelly"Sprockets" <bcsprocket...@gmail.com> wrote in message
>
> news:[email protected]...
> Hi Kelly,
> Your response made me think back to my last shipment. *The package was
> left on my deck for approx. 2 hours. *As it comes packed with gel
> coolants I assumed all was okay. *Now I am wondering if I should
> request a new shipment.
> Thanks.
> Bonnie
>
> On Mar 20, 7:27 pm, "kelly" <kelly...@shaw.ca> wrote:
>
>
>
> > Bonnie,
> > Everyone will at some time still have small flares on any med. A week is
> > not enough time to decide if it isn't working or not. It could be that you
> > are just feeling the effects of doing too much last week or perhaps it is
> > a
> > breakthrough flare.
>
> > Don't panic yet. Much to early to alert a rheumie in my opinion. Give it a
> > week or so and monitor. It could also be that a couple of your doses got
> > too warm or shaken too much and the flare is the result of a bad batch so
> > to
> > speak of the med. All sorts of things can affect.
>
> > Good to hear it was working so well. I am sure it will continue to -
> > fingers crossed.
>
> > kelly"Sprockets" <bcsprocket...@gmail.com> wrote in message
>
> >news:[email protected]....
>
> > > Hi All,
> > > I've been doing okay until this past week. Now I am noticing a flare
> > > a day which started over the weekend in my left wrist. My left hip is
> > > sore but nothing unbearable.(right elbow, right hip and both knees are
> > > replaced) My question is - Does Enbrel stop working? I've been on
> > > Enbrel for approx. 4 years. Not long ago I was doing so well I
> > > convinced my Rheumie to let me drop Mtx and I was relatively flare
> > > free for nearly a year. I thought I'd run my question by you all
> > > before I call my Rheumie.
>
> > > Thanks.
> > > Bonnie- Hide quoted text -
>
> > - Show quoted text -- Hide quoted text -
>
> - Show quoted text -

[Pope Pie (Sy Lehrman)]

Sprockets wrote:
> Sorry it didn't work for you. I guess I was lucky as it began working
> after only a few weeks.
>
> I've tried other meds with responses similar to all hell breaking
> loose too.
> >
> On Mar 20, 10:21 pm, "Pope Pie (Sy Lehrman)" <lao...@spam.cox.net>
> wrote:
>> Imagine that, taking Embrel for years!
>>
>> So far my record is two weeks before all hell broke loose.
>
Nobody ever figured out what all that rampant infection was or what
caused it. All the docs said that it couldn't be the Embrel but they
couldn't say what it was and the rheumy has not even broached the
subject. The pulmonologist, the cardiologist, and the GI guy all agree
that Embrel was not the cause but they can't give me any better
explanation. That makes me a bit nervous, if you know what I mean.

[Harvey R. Stone]

> Nobody ever figured out what all that rampant infection was or what caused
> it. All the docs said that it couldn't be the Embrel but they couldn't
> say what it was and the rheumy has not even broached the subject. The
> pulmonologist, the cardiologist, and the GI guy all agree that Embrel was
> not the cause but they can't give me any better explanation. That makes me
> a bit nervous, if you know what I mean.


You pay those people for answers. Get your moneys worth. Shrugging
shoulders is not modern science or answers or OK....

Harv

[Pope Pie (Sy Lehrman)]

Harvey R. Stone wrote:
>> Nobody ever figured out what all that rampant infection was or what caused
>> it. All the docs said that it couldn't be the Embrel but they couldn't
>> say what it was and the rheumy has not even broached the subject. The
>> pulmonologist, the cardiologist, and the GI guy all agree that Embrel was
>> not the cause but they can't give me any better explanation. That makes me
>> a bit nervous, if you know what I mean.
>
>
> You pay those people for answers. Get your moneys worth. Shrugging
> shoulders is not modern science or answers or OK....
>
> Harv
>
I am somewhat sympathetic because my mother was a marine biologist who
kept a tank of fish at something like 98 degrees but the expert from the
University of Miami stated categorically that the fish would die at
something like 95. His fish died and my mother's fish lived. Was it
the temperature? Maybe and maybe not. All anybody knew was that one
tank lived and one died and neither had the conclusive proof that it was
or was not the temperature of the water, although as loyal son I say my
mother was right. This went on for years in the lab and in Florida
state legislative committees.

The human system is so complicated that people are rarely certain that
what they are doing is right and so, in my mother's memory, I cut them
some slack. Some shoulder shrugging is, I guess, appropriate.

Mind you, if they harm me I am still willing to sue the bastards, but
that is another matter.

[Gareeth]

Pope Pie (Sy Lehrman) wrote:
>>
> I am somewhat sympathetic because my mother was a marine biologist who
> kept a tank of fish at something like 98 degrees but the expert from
> the University of Miami stated categorically that the fish would die
> at something like 95. His fish died and my mother's fish lived. Was
> it the temperature? Maybe and maybe not.

I had something similar happen to me as a child. I had three fish I named
Fred, Frank and hmm the third name escpapes me now. All of them were pretty
long lived as fish go and Fred lived close to 5 years. I went to replace him
and the pet store wouldn't sell them to me. Said they were tropical fish and
if kept just in a bowl they would die. I pleaded with them. Said 5 years is
very long for a fish and they flat out refused to believe Fred had lived so
long.

I don't think everything is knowable. With my own health it has often seemed
like most things are not knowable. Doctors are just humans and their are
limits to what medical science can tell us. Much of what we currently
believe will eventually be proved wrong I think.

Gareeth

[Squirrely]

yeah but then they shouldn't try acting like they are God.

--
Love and hugs to all
Love Squirrely Jo
>
> I don't think everything is knowable. With my own health it has often
> seemed like most things are not knowable. Doctors are just humans and
> their are limits to what medical science can tell us. Much of what we
> currently believe will eventually be proved wrong I think.
>
> Gareeth
>

[kelly]

Piggy backing on Rose's post. I think it also depends on what we have been
taking before these meds, what kind of shape you are in before - ie: with
remicade at the beginning some people were put on it but they had been
battling the disease for a long time, had taken all kinds of meds and they
were in essence "medically fragile". I am thinking of someone who was with
us when remicade was first released. in discussions with Diane she was more
than willing to take the remicade and was so hopeful. Not a lot of choices
left and she was pleased it was working. Her body though was "medically
fragile" from years of disease and other meds.

So was her pneumonia caused by the remicade or was her whole system
auto-immune compromised before the remicade?

Certainly I would expect for me that all the meds and the disease would and
do cause infections for me. After only a couple of weeks on the enbrel
perhaps they think it was what your system was like before.Or maybe not.
Hard to tell sometimes.

Bottom line is you do what your comfort level is. At some point the disease
for me makes me more likely to take risks. Interesting thing is for me the
worst med (and in a way worse than enbrel even with my reaction) was low
dose mtx. One of the safest meds but my body hates it - low wbc. For
others it is so safe they can actually take it without weekly blood tests.

All we can ask for is that research still happens to come up with answers.
Wish the doctors could answer and give better explanations but goodness
knows each of us on this newsgroup has had different reactions and effects
of the meds; needed different combinations, has different presentations of
the disease. Add in multiple diseases, side effects from other meds,
inactivity caused by disease, obesity problems with the meds and inactivity
and goodness knows we can multiply that by 1000's of people that aren't on
our group and how do we expect doctors to understand these things that
happen? We can expect the answers to maybe the side effects for 20% of the
people but for the side effects that only happen to a small percentage -
well not going to happen.

Basically the whole arthritis "diagnosis" still isn't understood very well.
Until we have full geneome testing and know what goes wrong with the
auto-immune system we will never fully be able to treat MS, arthritis,
parkinsons etc and find a cure. However the medical and scientific world is
getting so much closer. That for me is really hopeful.

Kelly
"RoseB" <[email protected]> wrote in message
news:[email protected]..
> On Mon, 23 Mar 2009 12:20:10 -0700, "Pope Pie (Sy Lehrman)"
> <[email protected]> wrote:
>
>
>>>
>>Nobody ever figured out what all that rampant infection was or what
>>caused it. All the docs said that it couldn't be the Embrel but they
>>couldn't say what it was and the rheumy has not even broached the
>>subject. The pulmonologist, the cardiologist, and the GI guy all agree
>>that Embrel was not the cause but they can't give me any better
>>explanation. That makes me a bit nervous, if you know what I mean.
>
> I don't understand this conclusion at all based on the fact that
> enbrel and other anti-tnf drugs impact the immune system. You
> developed an infection in likelihood because your immune system was
> suppressed.
>
> Yesterday I watched a program on The Learning Channel (TLC) about the
> "treeman" of Indonesia. The treeman was a relatively young man who
> developed large systemic warts (thousands of them) and the warts on
> his hands and feet grew so large that they developed horns that
> resembled the roots of a tree. A dermatologist from the US
> investigated and found that the warts were caused by the human
> papilloma virus (HPV) that had overgrown as a result of an almost
> non-functioning immune system. Immune suppression causes many
> problems. Taking this back to your situation, you were on a drug
> whose function is to suppress the immunity. As a result of that
> suppression, you developed an infection. What is not to understand?
>
> Rose @}->--
> Being educated means that rather than fearing the unknown,
> one seeks to understand it.
>
> Please remove "Ima" to reply.

[Pope Pie (Sy Lehrman)]

Squirrely wrote:
> yeah but then they shouldn't try acting like they are God.
>
I don't think they do, but I am inclined to ask for reasons when they
tell me things and I find that is useful. I asked several doctors what
was going on with that infection and got several interesting replies. I
find that asking for details is very helpful and if I don't understand
the answer I can look it up later. Since I seem to have a bunch of docs
lately I also find it useful to tell the one what the other said. If
nothing else it allows you to come up with a consensus.

Mind you, you have to be a little careful because if they feel
threatened they will drop you like a rock for fear of legal action, but
I know enough to sound like I'm asking a reasonable question, if you
know what I mean.

[loujeanb]

Rose, I saw that program a while ago. Things sure do happen that they can't
explain.

If you are taking a medication that is known to suppress immunity, what's to
understand about an infection occurring?

--
Navy
Take out the FISH to email me.
"RoseB" <[email protected]> wrote in message
news:[email protected]..
> On Mon, 23 Mar 2009 12:20:10 -0700, "Pope Pie (Sy Lehrman)"
> <[email protected]> wrote:
>
>
>>>
>>Nobody ever figured out what all that rampant infection was or what
>>caused it. All the docs said that it couldn't be the Embrel but they
>>couldn't say what it was and the rheumy has not even broached the
>>subject. The pulmonologist, the cardiologist, and the GI guy all agree
>>that Embrel was not the cause but they can't give me any better
>>explanation. That makes me a bit nervous, if you know what I mean.
>
> I don't understand this conclusion at all based on the fact that
> enbrel and other anti-tnf drugs impact the immune system. You
> developed an infection in likelihood because your immune system was
> suppressed.
>
> Yesterday I watched a program on The Learning Channel (TLC) about the
> "treeman" of Indonesia. The treeman was a relatively young man who
> developed large systemic warts (thousands of them) and the warts on
> his hands and feet grew so large that they developed horns that
> resembled the roots of a tree. A dermatologist from the US
> investigated and found that the warts were caused by the human
> papilloma virus (HPV) that had overgrown as a result of an almost
> non-functioning immune system. Immune suppression causes many
> problems. Taking this back to your situation, you were on a drug
> whose function is to suppress the immunity. As a result of that
> suppression, you developed an infection. What is not to understand?
>
> Rose @}->--
> Being educated means that rather than fearing the unknown,
> one seeks to understand it.
>
> Please remove "Ima" to reply.