Enbrel

[Guest guest]

My Lexi who's 4 has been on an injectable med (first MTX , then Enbrel) for

the last 3-4 months, and we've had great luck with giving her the shot at night

while she's asleep. We always prepare her the night before and say,

" Remember, tonight we'll be giving you your shot while you're sleeping " , but she

has

never woken up during a shot and only rarely even stirs. The next morning she

isn't even aware we gave her the shot! Hope this helps!

mom to Lexi, 4 pauci

[Guest guest]

In a message dated 12/12/05 9:18:39 PM Central Standard Time, ajaomom@...

writes:

AJ,

I am so sorry to hear that Holly has been flaring so badly.I hope you and the

rheumy can come up with a solution quickly.

> . Her question when we talk about the enbrel is,

> how big is the needle?? my question, is what is the typical amount is it

> under an ml?? any thoughts??

The needle is 27 gauge and Enbrel is just like MTX 1ml =25mg and every 1/10

ml is 2.5mg

It's usualy dosed at .4mg per 2.2lbs to start out with and a max dose of .8mg

per 2.2lbs

I can't say Holly would get the full ml 2 x weekly but she most likely would

have to take it as 2 shots.

At 70lbs you are pushing 25mg 1x weekly.

Hugs

Becki and 7 systemic

[Guest guest]

MARION!!!!! i will call you at home to talk about the enbrel.nate was

on it when it was so new that he had to wait nearly a year for the

company to make a new *factory* to get enuff product! i have so much

i can share with you,about alot of dosing,etc. i WILL CALL SOON! AND

YOU KNOW DR.R. & KRISTIN WILL BE RIGHT THERE WITH YOU,as they are for

all of us. ilse

>

> Holly is flaring again, this has been the worst year for

her......she has

> basically flared everytime that we tried to stop the pred. The

rheumie said

> she would have tried her on enbrel along time ago if she wasn't so

needle

> phobic........its awful!!!!!!! every Friday night is awful, it

did get some

> better recently after spending a few hours at shriners talking

about some

> coping strategies with child life. Her question when we talk about

the enbrel is,

> how big is the needle?? my question, is what is the typical

amount is it

> under an ml?? any thoughts?? this has been hollys worst year

over all,

> since she was diagnosed, i mean the arthritis has been worse, she

has been

> sicker and in more pain at times, but this has been a year now that

we have not

> got her under even a real medicated control. Talk to you soon

>

> Luv and hugs,

> Aj and Holly (11 yrs old, systemic jra since 9/94)

> _www.caringbridge.org/visit/holly_

(http://www.caringbridge.org/visit/holly)

>

>

>

>

>

[Guest guest]

MARION!!!!! i will call you at home to talk about the enbrel.nate was

on it when it was so new that he had to wait nearly a year for the

company to make a new *factory* to get enuff product! i have so much

i can share with you,about alot of dosing,etc. i WILL CALL SOON! AND

YOU KNOW DR.R. & KRISTIN WILL BE RIGHT THERE WITH YOU,as they are for

all of us. ilse

>

> Holly is flaring again, this has been the worst year for

her......she has

> basically flared everytime that we tried to stop the pred. The

rheumie said

> she would have tried her on enbrel along time ago if she wasn't so

needle

> phobic........its awful!!!!!!! every Friday night is awful, it

did get some

> better recently after spending a few hours at shriners talking

about some

> coping strategies with child life. Her question when we talk about

the enbrel is,

> how big is the needle?? my question, is what is the typical

amount is it

> under an ml?? any thoughts?? this has been hollys worst year

over all,

> since she was diagnosed, i mean the arthritis has been worse, she

has been

> sicker and in more pain at times, but this has been a year now that

we have not

> got her under even a real medicated control. Talk to you soon

>

> Luv and hugs,

> Aj and Holly (11 yrs old, systemic jra since 9/94)

> _www.caringbridge.org/visit/holly_

(http://www.caringbridge.org/visit/holly)

>

>

>

>

>

[Guest guest]

Just my 2 cents, for Enbrel in general...

If your child is big enough for 50 mg a week, DON'T go to the once a week

dosing, especially if your child has a problem with needles. The premixed

50mg syringe has a really dull needle, and the preservative in it makes

it feel like you are injecting hot sauce into your skin! I was originally

on the 50mg and went to the 25 mg twice a week and it is so much better.

The needle is less dull, the medication does not burn at all. Just my 2

cents!

Hope Miss Holly gets as dramatic results with Enbrel as the rest of us

have. If she does, she will actually be glad she is getting her shots

because she will be feeling so much better!

I'll keep her in my prayers.

and Rob 16 Spondy

On Wed, 14 Dec 2005 14:03:19 EST Arthurnator@... writes:

In a message dated 12/12/05 9:18:39 PM Central Standard Time,

ajaomom@...

writes:

AJ,

I am so sorry to hear that Holly has been flaring so badly.I hope you and

the

rheumy can come up with a solution quickly.

> . Her question when we talk about the enbrel is,

> how big is the needle?? my question, is what is the typical amount is

it

> under an ml?? any thoughts??

The needle is 27 gauge and Enbrel is just like MTX 1ml =25mg and every

1/10

ml is 2.5mg

It's usualy dosed at .4mg per 2.2lbs to start out with and a max dose of

..8mg

per 2.2lbs

I can't say Holly would get the full ml 2 x weekly but she most likely

would

have to take it as 2 shots.

At 70lbs you are pushing 25mg 1x weekly.

Hugs

Becki and 7 systemic

[Guest guest]

>

> My name is Ian, I am 46 years old, from West Yorkshire UK,

diagnosed

> with PsA for five years but can trace it back to my teenage

years.

> have been on MTx and diclofenac but with no significant results.

My

> Rhumi has suggested Enbrel which I will start on 18th April 2006.

I

> must admit that I am a little apprehensive about this.

>

> Would it help or be of interest to the group if I posted a diary

of my

> experiences with the Enbrel.

>

> Yours Ian.

>

> [Editor's Note: By all means, please feel free to do that, Ian,

however, every human body is different and each user reacts slightly

differently to Enbrel. Your experience may or may not be typical so

there possibly won't be broad applicability to your experience.

Most of us went through a lot of the fear and apprehension before

starting down the road of using the " big gun " medicines, but for

those who benefit from them, we wish we had taken the plunge years

earlier. Many people on this list, including me, take or have taken

Enbrel so please don't hesitate to ask any questions you may have.

The one thing I will say is that while there can be side effects,

they are extremely rare (other than fatigue) so it is likely that

your fears will subside in fairly short order after you start taking

it. Hope it works well for you. Kathy F.]

>

Thank you, Kathy, for your prompt reply, the one thing I was hoping

to get some relief from was the fatigue! I cant remember the last

day I did not wake up still feeling tired, or in pain for that

matter, must have been in my teenage years. Last night every part of

my body hurt, Slept most of the night downstairs on the sofa, does

anyone else get like that? Well, we are looking forwards to snow in

West Yorkshire, only about a foot or so, overnight! It is

comforting to be in touch with people who understand how I am

feeling right now and can give good advice based on personal

experience, which I know is what I need.

[Guest guest]

>

> My name is Ian, I am 46 years old, from West Yorkshire UK,

diagnosed

> with PsA for five years but can trace it back to my teenage

years.

> have been on MTx and diclofenac but with no significant results.

My

> Rhumi has suggested Enbrel which I will start on 18th April 2006.

I

> must admit that I am a little apprehensive about this.

>

> Would it help or be of interest to the group if I posted a diary

of my

> experiences with the Enbrel.

>

> Yours Ian.

>

> [Editor's Note: By all means, please feel free to do that, Ian,

however, every human body is different and each user reacts slightly

differently to Enbrel. Your experience may or may not be typical so

there possibly won't be broad applicability to your experience.

Most of us went through a lot of the fear and apprehension before

starting down the road of using the " big gun " medicines, but for

those who benefit from them, we wish we had taken the plunge years

earlier. Many people on this list, including me, take or have taken

Enbrel so please don't hesitate to ask any questions you may have.

The one thing I will say is that while there can be side effects,

they are extremely rare (other than fatigue) so it is likely that

your fears will subside in fairly short order after you start taking

it. Hope it works well for you. Kathy F.]

>

Thank you, Kathy, for your prompt reply, the one thing I was hoping

to get some relief from was the fatigue! I cant remember the last

day I did not wake up still feeling tired, or in pain for that

matter, must have been in my teenage years. Last night every part of

my body hurt, Slept most of the night downstairs on the sofa, does

anyone else get like that? Well, we are looking forwards to snow in

West Yorkshire, only about a foot or so, overnight! It is

comforting to be in touch with people who understand how I am

feeling right now and can give good advice based on personal

experience, which I know is what I need.

[Guest guest]

Hi Ian my name is Lynn and I live in Scotland at the moment I am on methotrexate

but the last two weeks only way I can put it has been like hell. I don't feel it

is working for me. It's good to hear you have a good rhumey who is putting you

on something else. The last two weeks I have been in constant pain or achey

can't get comfy or walking is nightmare. My mum read somewhere walking aids can

help so she got me a walking stick to help it does a little but I am so

exhuasted and not sleeping properly ( because of the pain). Looking forwardto

hearing more from you Lynn.

---------------------------------

Messenger NEW - crystal clear PC to PC calling worldwide with voicemail

[Guest guest]

> Good basic nutrition is very important to fight the good fight...

Very sound advice pearl!

> Pearl (week 2 on Enbrel) does anyone know how long before i can

> tell this is working?

I am in a similar space, starting enbrel in a couple weeks. I've read

and heard that some folks get relief right away, some it takes 3-6

months, most fall somewhere in between.

Cheers -

[Guest guest]

>

>

>

> Hi Ian my name is Lynn and I live in Scotland at the moment I am

on methotrexate but the last two weeks only way I can put it has

been like hell. I don't feel it is working for me. It's good to

hear you have a good rhumey who is putting you on something else.

The last two weeks I have been in constant pain or achey can't get

comfy or walking is nightmare. My mum read somewhere walking aids

can help so she got me a walking stick to help it does a little but

I am so exhuasted and not sleeping properly ( because of the pain).

Looking forwardto hearing more from you Lynn.

>

> ---------------------------------

> Messenger NEW - crystal clear PC to PC calling worldwide

with voicemail

>

>

[Guest guest]

> Slept most of the night downstairs on the sofa, does

> anyone else get like that?

Definitely. I've been sleeping mostly in an easy chair for a couple

months now. Sure do look forward to time in my nice comfy bed....

someday soon I hope (g)...

[Guest guest]

Hi Ian Lynn here. The only way that I can use my walking stick is by using wrist

splints that the hospital gave me but that's starting to get a bit painfull as

my elbow has started clicking and all my muscles in my legs and arms are getting

pretty painfull again.

---------------------------------

Messenger NEW - crystal clear PC to PC calling worldwide with voicemail

[Guest guest]

Hi Susie

The physical stress of surgery can certainly activate symptoms, and

then again sometimes this disease is just unpredictable. I just took

my first dose of enbrel yesterday, and I am currently on Prednisone

10mg a day - started at 20. Even with the prednisone, symptoms didn't

get better immediately, took a few days for some result and then a bit

better over the next couple of weeks. Local joint injections of

prednisone like drugs only partially helped for a few weeks, so I had

to go on the pills.

It has to be up to your doc to decide whether to increase the dose of

your enbrel or change to another similar drug. A number of group

members have switched from enbrel to humira and vice versa when the

first drug stopped working. So your doc is keeping your best interests

in mind. Very often if one of the anti TNF drugs doesn't work, another

will.

Yes, it can be very frustrating - I still am not used to the idea that

most of these heavier arthritis drugs can take 3-6 months to work. In

the meantime you might want to ask your doc for a referal to a pain

specialist - hopefully then you can get your pain down to a level that

is not as out of control and frustrating until the other drugs start

having an effect.

Best regards -

[Guest guest]

> , thank you for your reply. It was helpful and reassuring.

This group has always been so great! Susie

> Hi Susie

>

> The physical stress of surgery can certainly activate symptoms, and

> then again sometimes this disease is just unpredictable. I just took

> my first dose of enbrel yesterday, and I am currently on Prednisone

> 10mg a day - started at 20. Even with the prednisone, symptoms

didn't

> get better immediately, took a few days for some result and then a

bit

> better over the next couple of weeks. Local joint injections of

> prednisone like drugs only partially helped for a few weeks, so I

had

> to go on the pills.

>

> It has to be up to your doc to decide whether to increase the dose

of

> your enbrel or change to another similar drug. A number of group

> members have switched from enbrel to humira and vice versa when the

> first drug stopped working. So your doc is keeping your best

interests

> in mind. Very often if one of the anti TNF drugs doesn't work,

another

> will.

>

> Yes, it can be very frustrating - I still am not used to the idea

that

> most of these heavier arthritis drugs can take 3-6 months to work.

In

> the meantime you might want to ask your doc for a referal to a pain

> specialist - hopefully then you can get your pain down to a level

that

> is not as out of control and frustrating until the other drugs start

> having an effect.

>

> Best regards -

>

[Guest guest]

Hi Meg

Congrats on trying enbrel. I hope it works well for you.

Putting on my stethoscope ( I'm a retired doc ) - in all honesty,

doctors are only now *starting* to understand autoimmune disorders. In

early years the best they could do was categorize what they thought

they saw in patients. Many folks do not have the " pure " " traditional "

forms of lupus, sjogrens, ra, as, pa, ibs, etc etc. I believe we are

looking at a spectrum of disease effects with many common causative

factors. This has been both confusing and confounding in the training

of docs to handle autoimmune patients.

I have had at least a dozen different diagnosis / explanations for my

aches and pains over the years, and not once was an autoimmune

disorder considered until last year.

Don't let one of their category names frighten you too much...

I've been on enbrel for 2 months now. It hasn't been the complete

magic bullit, but it has helped a lot. I also don't think I'm over

suppressed, twice this month I've been exposed to a cold bug, and both

times I had symptoms for a few days and then it was over.

That could be you too... Just be vigilant about fevers / cuts /

scrapes and don't be too stoic - let your doc know earlier rather than

later about infections...

Best of luck! -

[Guest guest]

and Meg, I was glad to read your posts. I have autoimmune problems

but except for knowing the things I have had, no one knows the real cause.

I am Hla-B27 positive and have a lot of different syndromes.

My son who is 32 finally went to a rheumatologist after my begging for

years. He was born with asthma. The rheumy diagnosed him with AS

immediately; said there was no reason to test for the gene, and started him

on Enbrel. Greg was already in Stage 3. He nearly fainted when he was

told his co pay but fortunately we located a place for assistance with that.

It's the one Montel advertises; PAP.

I saw the rheumy today and he said Greg has to take the medication. He

gaves me shots from the base of my skull to the lower part of my buttocks.

I have been having more problems with my knees due to Reiters so he

injected those places also. I think it was Demerol. It certainly helps the

spasms and pain. Neurologist has also done tests on me recently and is

leaning toward thinking I now have diabetes. I will have the glucose

tolerance test next week. I really hope that it is not the case; however, I

have neuropathy from the tips of my toes to my knees and from the ends of my

fingers to my elbows. Lovely, one more thing to deal with. My first round

of iritis was at Age 10. My eye was dilated for a year because the docs

didn't know what to do with me.

This group is so good for information and encouragement. Please don't give

up. Maybe they will find the answers one day.

Jane

----- Original Message -----

> Hi Meg

> Congrats on trying enbrel. I hope it works well for you.

>

[Guest guest]

Gee, thanks Jane! Glad you found my blatherings helpful!!!

Actually, if diabetes is in the mix of things in your life, diagnosis

and treatment could help you a *lot*. For diabetics who get

neuropathy, good sugar control helps regains some nerve function and

slows down or eliminates furthur progression. And this improvement /

prevention happens in a high percentage of patients. So although it's

a pain to deal with another issue, if you really do have it dealing

with it *will* help how you feel, imo...

I know exactly the kinds of shots you receive - I used to give them!!!

Sorry you have to go through it, they usually help. Some day soon I

have confidence docs will be able to deliver similar relief without so

many needle sticks.

I was originally diagnosed with atypical Reiter's in the late 70s.

Mine came a few months after a few run ins with Typhoid while living

in the tropics. From my perspective - totally biased - I think I'm 50%

Reiters and 50% PA symptom-wise. The names don't make too much

difference these days, the meds are the same...

Best regards -

[Guest guest]

, thanks for responding. I had iritis at 10 years of age, was a victim

of incest, and probably was given chlamydia near the same time. My whole

life has been a struggle. I don't think I could name all the " itis " I have

had. I will be glad to get this second glucose tolerance test behind me. I

may be diabetic. My mother is Type I and my father's mother was Type I. If

my worst fears are correct though, my step dad, a Baptist preacher, was

poisoning me and my mother a few years ago with arsenic. Mother almost died

and has no idea today; she has gained her weight back since his death and

looks great at 78 years of age. I stole the insulin from the refrigerator

while she lay totally paralyzed at the hospital. Step dad never said a

word. He just taped his injectible B 12 to the refrigerator and quietly

replaced the insulin with a new bottle. My hematologist at the time thought

I was being poisoned but I was only in their home on an infrequent basis. I

do carry the gene and my younger son now has been diagnosed with AS; that's

added to the asthma he has always had. My older son lives with an incurable

virus. God said he wouldn't put more on us that we could bear but I think I

am almost there. Please pray for me.

If I remember correctly you are a doctor. What do you know about Bipolar

II? Thanks

Jane

Re: Enbrel

> Gee, thanks Jane! Glad you found my blatherings helpful!!!

>

[Guest guest]

Hi

Oh how right you are. Adding Diabetes of any type to the mix with AS/Reiters

and all their other brother and sister illnesses, definitely does make life much

more difficult but mainly to the doctors and nurses.

Just think of a patient presented at the ER with burning Neuropathic pain with

numbness going down both legs and that pins and needles feeling in your feet.

This can be diabetes or Cauda Equina Syndrom and both of those are diseases you

really don't wan't or need. Especially in folks with long standing cases of

Ankylosing Spondylitys.

To make the diagnosis much, much more harder are all the drugs we are on that

have very nasty side effects in the same areas. Of course their biggest problem

as I see it, is a well informed patient who does research things.

Fr. Dave

probably easier that the +/-

Re: Enbrel

Gee, thanks Jane! Glad you found my blatherings helpful!!!

Actually, if diabetes is in the mix of things in your life, diagnosis

and treatment could help you a *lot*. For diabetics who get

neuropathy, good sugar control helps regains some nerve function and

slows down or eliminates furthur progression. And this improvement /

prevention happens in a high percentage of patients. So although it's

a pain to deal with another issue, if you really do have it dealing

with it *will* help how you feel, imo...

I know exactly the kinds of shots you receive - I used to give them!!!

Sorry you have to go through it, they usually help. Some day soon I

have confidence docs will be able to deliver similar relief without so

many needle sticks.

I was originally diagnosed with atypical Reiter's in the late 70s.

Mine came a few months after a few run ins with Typhoid while living

in the tropics. From my perspective - totally biased - I think I'm 50%

Reiters and 50% PA symptom-wise. The names don't make too much

difference these days, the meds are the same...

Best regards -

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[Guest guest]

Hi Jane

My oh my, I'm so sorry, you have had way way more than your share of

adventure...

I've been out of active practice for more than a decade, psych wasn't

my field, so I don't know a lot about the subtleties of bipolar

disorders other than a patient will alternate between too stimulated

and too depressed. Way back then all that was offered was lithium

maintenance and heavy tranquilizers during manic periods.

My thoughts and prayers are with you... -

[Guest guest]

Dave - you crack me up!!!!! ROTF - ouch(g) You are sooooooo right!

Methinks you are feeling a bit better....

Cheers -

> Of course their biggest problem as I see it, is a well informed

patient who does research things. <

[Guest guest]

Thanks, . I recently had my first and only manic episode but my

medication for depression had been changed to Cymbalta. I thought the

medicine caused the problem. I have now seen a psych and he thinks I

possibly have Bipolar II. I never knew there was such a thing. I always

thought it would be fun to have at least one high. LOL There is no

certainty in a psych diagnosis; I have been told major depression recurrent,

dysthimia, and post traumatic stress. My body is always in a state of fight

or flight. Tears stay near the surface and I wonder if the depression and

anxiety bring on a lot of the physical problems. Oh, well. My life has

been different.

Thank you, Jane

Re: Enbrel

> Hi Jane

> My oh my, I'm so sorry, you have had way way more than your share

[Guest guest]

Thank *you* Jane - you have taught me something!

Best wishes -

[Guest guest]

Hi again

In my last reply in this exchange I did not put in what I wanted to put in.

You wrote:

I was originally diagnosed with atypical Reiter's in the late 70s.

Mine came a few months after a few run ins with Typhoid while living

in the tropics. From my perspective - totally biased - I think I'm 50%

Reiters and 50% PA symptom-wise. The names don't make too much

difference these days, the meds are the same...

I have begun to feel that there is only one disease, Spondyloarthropathy

Syndrome, and folks presenting with one of the Spondy's will have more than one

other showing up. For instance for me, AS, RA, Reiter's and PA.

For many years folks thought that the only real bad arthritis was Rheumatoid

Arthritis and tended to look at the other Spondy's as more or less a wear

related problem and lumped them in with Arthritis. One back specialist I know

was doing a radio talk show I was listening to while driving along the highway,

before cellular, so I called in with my Mobile Radio and asked him about AS. He

then said thanks and went on to describe the Spondy's that were not a wear

problem but an actual disease of the spine and connecting tissue. He later

thanked me for bringing the subject up as not many folks knew about Spondy's.

I should also add that a well informed patient should never go into a doctor's

office asking for things as if we know it all. That will get you a new doctor,

or reputation as " one of those " , as it does make them mad, and I can't blame

them. Don't come on like you know more than they know.

That is why I get along well with all my doctors.

Blessings

Fr. Dave

[Guest guest]

Jane

> My life has been different <

You should write a book!