Enbrel Dosage

[Guest guest]

Hello Anton

,

My experience with drug therapy, if there has been no improvement in 6

months, then I would ask why the question, why did the doctor wait so

long to increase the dosage!

Yes, I had those types of experiences during my teenage years while

undergoing treatment, always getting the same responses.

It he_ _ when your at the mercy of these pontificating physicians.

I mean come on, if they didn't see any improvement with in a months time,

then why didn't the doctor increase the dosage then.

I know this may sound as though I'm a might, bitter.

But after reading the many posting I've been seeing, the war stories, and

the availability of the med's now for jra suffer's. Well there is no need

to make these angels, suffer with the discomfort and often unbearable

pain.

It's doctor's like that, I'd like to put my 5 inch boot lift where it

would do the most good!

I just can't believe what some of these doctor's make these poor little

ones deal with.

I'm sorry for my rant, I just can't stand to see undo suffering put on a

child.

And you should never be made to feel helpless by your sons' doctor.

I've got to stop before I explode,you'll find the right answer, I'm

certain.

[Guest guest]

Hello ,

The 6 month's period is compulsory under the medical protocol so the dosage

could not be changed.

It is the interest of all our children to have feedback if Enbrel is really

working, for which JRA subtype, what are the the adverse effects...

I'm not aware if the question of the right dosage has been studied so far.

But I understand quite well (being myself a scientist) that if you begin to

mix all parameters (subtypes, other medicines, dosage...) at the same time

in a study it is impossible to know about the real efficacy and adverse

effects of the treatment.

Of course, when Vivien stated to take Enbrel we had to accept this.

I do not believe that most doctors make these protocols considering our

children as guinea pigs, but somehow beyond each child's interest they must

consider general interest for other children.

But now, the 6 month protocol being finished, the medical protocol is over,

and we have a relative freedom to try a higher dosage.

Anton

-----Message d'origine-----

De : DONALD A MORSE [mailto:dam755@...]

Envoyé : samedi 16 juin 2001 09:01

À :

Cc :

Objet : Re: Enbrel dosage

Hello Anton

,

My experience with drug therapy, if there has been no improvement in 6

months, then I would ask why the question, why did the doctor wait so

long to increase the dosage!

Yes, I had those types of experiences during my teenage years while

undergoing treatment, always getting the same responses.

It he_ _ when your at the mercy of these pontificating physicians.

I mean come on, if they didn't see any improvement with in a months time,

then why didn't the doctor increase the dosage then.

I know this may sound as though I'm a might, bitter.

But after reading the many posting I've been seeing, the war stories, and

the availability of the med's now for jra suffer's. Well there is no need

to make these angels, suffer with the discomfort and often unbearable

pain.

It's doctor's like that, I'd like to put my 5 inch boot lift where it

would do the most good!

I just can't believe what some of these doctor's make these poor little

ones deal with.

I'm sorry for my rant, I just can't stand to see undo suffering put on a

child.

And you should never be made to feel helpless by your sons' doctor.

I've got to stop before I explode,you'll find the right answer, I'm

certain.

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[Guest guest]

Thank you Anton, true I am no scientist and please forgive my tyrate.

Unfortunately I sometimes let my emotions get the best of me. I was

unaware of the protocols, governing the administration of drugs to

children, although I should have realized, they would have changed since

I was diagnosed in the 60's, when I was the case study. I truly hope,

with all my heart that Vivien,starts to respond treatment.

I am learning much much more, since I found the jra list and with the

patient understanding of everyone, I will continue to do so!

Sorry for coming across like a lunatic.

I am really amazed, at the course of drug therapy in use for children

today, when I was first started out the drug of chose was, cortisone and

bayer aspirin. Gold injections were being used, but only for adults.

After developing cataracts, I was taken off cortisone and put on

predisone. Then at the age of 18, I was started on gold, once a week.

After each shot it would knock me right out.

The eventual results were, severe weight loss and a steadily declining

blood count, as well as severe back pain and I became so hunched over,

that I went from 5'5 " to barely 5'.

Regardless of my complaints, I was told, they needed to get my gold

levels higher to be effective.

Until finally I had enough, and said no more, stopped going to Ann Arbor

and found a doctor in my own town.

She started me on Butizolidin, Tolectin and Indocin, I rally round and

gained my weight back , as well my strength. I have since been of

Naprisyn and currently I am taking Vioxx and Methotrexate.

[Guest guest]

Anton,

My son has been taking .5 or 12.5 mg of Enbrel twice a week for

almost a year. He has done very well with it. They increased

his dose to 1.0 or 25mg (the regular adult dose) this week. He is

14 years old and weighs 95 lbs. The plan is to get rid of all other

drugs, which I am excited about. He stopped Methotrexate at

the same time as the increase and is going to keep decreasing

Prednisone until he is off of it. When this is done, we are going to

stop NSAIDs as well, cross our fingers. Many adults are on Enbrel

only. My son is Polyarticular, so you may be in a different boat

with the systematic. Take care, Jana

[Guest guest]

Hi Anton,

Thank you for explaining this process better, for those who may have

been unfamiliar with it. I see children such as Vivien not so much as

guinea pigs but as the true pioneers in our search for a cure. I do hope

that soon you will come upon the right combination of meds that Vivien

will respond to positively. This has been a very long struggle and he

deserves to have a remission of JRA symptoms. I hope it happens. Soon.

Take Care,

Georgina

Anton GRUSS wrote:

>

> The 6 month's period is compulsory under the medical protocol so the dosage

> could not be changed.

> It is the interest of all our children to have feedback if Enbrel is really

> working, for which JRA subtype, what are the the adverse effects...

> I'm not aware if the question of the right dosage has been studied so far.

> But I understand quite well (being myself a scientist) that if you begin to

> mix all parameters (subtypes, other medicines, dosage...) at the same time

> in a study it is impossible to know about the real efficacy and adverse

> effects of the treatment.

> Of course, when Vivien stated to take Enbrel we had to accept this.

> I do not believe that most doctors make these protocols considering our

> children as guinea pigs, but somehow beyond each child's interest they must

> consider general interest for other children.

> But now, the 6 month protocol being finished, the medical protocol is over,

> and we have a relative freedom to try a higher dosage.

> Anton

[Guest guest]

Hi All,

My rheumy discussed the possibility of starting on Enbrel. Forgot what dosage

he mentioned -- I know it was one injection per week. He's away on vacation. I

need to know what dosage I might be taking so I can compare Medicare drug plans.

According to the Enbrel site most RA patients take 50mgs.

Is it true that 50 mgs is the recommended dose for RA. Do some people take

25mgs?

Best to everyone,

Ira Brightman

[Guest guest]

50 mgs yes that is the doseage

In a message dated 12/28/2010 12:25:26 P.M. Eastern Standard Time,

searcher100yy@... writes:

Hi All,

My rheumy discussed the possibility of starting on Enbrel. Forgot what

dosage he mentioned -- I know it was one injection per week. He's away on

vacation. I need to know what dosage I might be taking so I can compare

Medicare drug plans. According to the Enbrel site most RA patients take 50mgs.

Is it true that 50 mgs is the recommended dose for RA. Do some people take

25mgs?

Best to everyone,

Ira Brightman

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[Guest guest]

I'm still on the 25mg that I mix myself. I tried the 50mg, but found

that it didn't last as long for me. Some people think that the 50mg

stings because of the preservative in it. I can't really remember if

it stung for me or not, it's been so long since I tried it.

Sue

On Dec 28, 2010, at 12:03 PM, irabrightman wrote:

> Hi All,

>

> My rheumy discussed the possibility of starting on Enbrel. Forgot

> what dosage he mentioned -- I know it was one injection per week.

> He's away on vacation. I need to know what dosage I might be taking

> so I can compare Medicare drug plans. According to the Enbrel site

> most RA patients take 50mgs.

>

> Is it true that 50 mgs is the recommended dose for RA. Do some

> people take 25mgs?

[Guest guest]

Sue...I am on 50 mgsa week...but give myself an injection twice a week of

the 25mgs. I, also, do the self mix....and it doesn't have the

preservative that burns, which I love.

a

In a message dated 12/28/2010 2:03:36 P.M. Eastern Standard Time,

marysue@... writes:

I'm still on the 25mg that I mix myself. I tried the 50mg, but found

that it didn't last as long for me. Some people think that the 50mg

stings because of the preservative in it. I can't really remember if

it stung for me or not, it's been so long since I tried it.

Sue

On Dec 28, 2010, at 12:03 PM, irabrightman wrote:

> Hi All,

>

> My rheumy discussed the possibility of starting on Enbrel. Forgot

> what dosage he mentioned -- I know it was one injection per week.

> He's away on vacation. I need to know what dosage I might be taking

> so I can compare Medicare drug plans. According to the Enbrel site

> most RA patients take 50mgs.

>

> Is it true that 50 mgs is the recommended dose for RA. Do some

> people take 25mgs?

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nonsubscribers, you must first obtain the writer's permission.

We are NOT physicians. Information on this list is not to be construed

as medical advice, and we cannot guarantee the accuracy and currency

of the information provided.

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[Guest guest]

That's what I do, too, a. Except right now I have a sinus

infection. I had a cold at Thanksgiving, now this at Christmas. I'm

holding off on the Enbrel until I get better.

Sue

On Dec 28, 2010, at 2:05 PM, rascalsniche@... wrote:

> Sue...I am on 50 mgsa week...but give myself an injection twice a

> week of

> the 25mgs. I, also, do the self mix....and it doesn't have the

> preservative that burns, which I love.

>

> a

[Guest guest]

Hi Sue..ugh..those infections. It's smart to hold off on the enbrel.

I've had to do that quite a few times myself.

Hope you feel better.....hugs..a

In a message dated 12/28/2010 3:33:05 P.M. Eastern Standard Time,

marysue@... writes:

That's what I do, too, a. Except right now I have a sinus

infection. I had a cold at Thanksgiving, now this at Christmas. I'm

holding off on the Enbrel until I get better.

Sue

On Dec 28, 2010, at 2:05 PM, rascalsniche@... wrote:

> Sue...I am on 50 mgsa week...but give myself an injection twice a

> week of

> the 25mgs. I, also, do the self mix....and it doesn't have the

> preservative that burns, which I love.

>

> a

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[Guest guest]

Thanks, a. I never know how long to hold off. I'm pretty

conservative about it. So far this time my RA is behaving itself, but

it's been only five days since my last injection.

Sue

On Dec 28, 2010, at 6:03 PM, rascalsniche@... wrote:

> Hi Sue..ugh..those infections. It's smart to hold off on the enbrel.

> I've had to do that quite a few times myself.

>

> Hope you feel better.....hugs..a

>

[Guest guest]

That's great Sue...I'm pretty conservative about it myself. I'm glad the

r/a is not acting up. Hope it keeps on behaving...a

In a message dated 12/28/2010 7:42:16 P.M. Eastern Standard Time,

marysue@... writes:

Thanks, a. I never know how long to hold off. I'm pretty

conservative about it. So far this time my RA is behaving itself, but

it's been only five days since my last injection.

Sue

On Dec 28, 2010, at 6:03 PM, rascalsniche@... wrote:

> Hi Sue..ugh..those infections. It's smart to hold off on the enbrel.

> I've had to do that quite a few times myself.

>

> Hope you feel better.....hugs..a

>

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