Psoriatic Arthritis: Enbrel

[Guest guest]

In a message dated 12/13/2004 6:21:56 PM Central Standard Time,

mickysz@... writes:

Enbrel has been around for about 7 years and so far has also got a proven

track record in managing the pain of our disease and this is also about the

1 in 3 range of people that it helps, again a lot of people on Enbrel have

no side effects at all. However Enbrel costs about 250 pounds a week to

use.

The myth doing the rounds is that Enbrel is far superior to MTX

when in fact this is just plainly untrue.

Hi Micky -

It has been YEARS since I have researched the drugs (since I feel good now,

I don't read 1/2 as much now! Don't have the time!), so my facts on why I

chose Enbrel are a little vague ... but I had good reason to take it over MTX.

One being I was 26 years old at the time. Seeing your explanation of how they

work reminded me why I chose Enbrel... the drug makes more sense to me

personally. I understand more WHY it works. Enbrel not only helps with pain but

also

inhibits progression of joint damage in many patients (many showing no

progression of the disease on their joints after 3 years of use), and I have

friends who have used MTX for years and still have severe damage. I am certain

seeing their damage after 10+ years on MTX also helped influence my personal

decision. We will only know after many more years of research if Enbrel truly

does prevent or inhibit the progression of joint damage, but I am willing to

take that chance if I am a lucky one with no damage 10 years from now!

As far as the " myth " goes - I don't really care if it's true or untrue... I

just know that I did my research and chose the safest most efficient drug for

my age & my body... and had the help of a great specialist in doing so. He

agreed that I should not go on MTX AT ALL due to my age and the disease being

so mild/moderate in my body. I had all of my facts and knew the drug I wanted

before I ever went to him, but I wanted someone I knew was educated to tell

me that I was on the right path... his approval did me a world of good. Seems

all of the older Rheum's I went to wanted me on MTX. I just moved on to the

next one until I finally found a more progressive young Rheum who first and

foremost said Enbrel. Once I found him I then went to the specialist to make

sure I had my facts straight... and went on Enbrel from there.

As I have stated before, I am not a drug taker... this decision was and IS a

very big one for me, but it has been well worth it. I CAN RUN AGAIN, whereas

before I could barely walk! I do pray EVERYDAY that I God keeps me healthy

and I don't pay for getting my life back with my life...

P.S. Were the %'s on cancer risk including the fact that having this disease

makes you more likely to get cancer in the first place?

[Guest guest]

In a message dated 12/13/2004 5:45:24 AM Eastern Standard Time,

pookiegut@... writes:

My 2 cents - for anyone choosing a drug - do your research and choose the

best drug for you. Decide if you want to go with 40 years of tried and

tested OR

newer more advanced (more " unknowns " ) medications. It's all about educating

yourself and knowing what you are able to take...

Hey ,

I am totally in agreement, I was just responding to why some doctors don't

immediately prescribe enbrel. There are some factors beyond cost, and every

person is different and has different reactions. If you are exhibiting some

lupus symptoms, enbrel is not a good option. Cancer stats are not widely

publicized, but are in the documents that my doctor received when she requested

the full list of side effects. I think many doctors don't communicate well,

and may not share the full reason why they prescribe one drug over another.

For me, I can't take MTX either (because my job involves drinking alcohol), so

I am not advocating one over the other:-)

[Guest guest]

Here do you get this one out of three people statistic? I was told that

Enbrel is 50% effective for RA and slightly better for PA. Maybe 60%. This

is in the Immunex literature. If true, would it then be a more effective

and safer choice than MTX?

[ ] Psoriatic Arthritis: Enbrel

Hi and Hi

Enbrel does not treat the cause of PA and neither does MTX. They both treat

the symptoms of PA. The reason MTX works is because it slows down the cells

dividing in the body, this is why it has an effect on inflammation in the

body as it slows down the cascade of inflammation that happens with

auto-immune diseases. This is also the reason that MTX cannot be taken with

people trying for a baby, it will basically slow down the cells dividing,

causing birth defects etc. MTX was first used for cancer because of its

unique ability to slow down cell division, which is why it is used so much

in cancer treatment. Psoriasis is caused by the Keratinocyte cells dividing

too quickly, again this why MTX helps with psoriasis. It was discovered that

people with Cancer who took MTX also had a remission (In some cases) of

their psoriasis this why they linked MTX with Psoriasis. Of course people

could not take the high doses of MTX that are used with Cancer patients, and

that is why the dose for PA/psoriasis is considered safe, if taken under

supervision of your rheumatologist.

On the other hand Enbrel works because it also acts on the inflammation, but

at a lower level than MTX. Here Enbrel is targeting TNF(Tumour neurosis

factor), The reason that this helps us is because TNF is building up in our

bodies and we have too much of the stuff. TNF is a chemical messenger that

is telling our immune system to unleash all types of T cells, Macrophages,

Osteoclasts, mast cells, dendric cells and other cells involved in an immune

response, and are basically sending these cells into battle. TNF is good

because it acts like our alarm and stops invaders and other destructive

forces like cancer through a normal immune response, but for some reason (as

yet undiscovered) our TNF will not go away and the cycle is kept going,

hence why we get continued inflammation. What Enbrel does is stops the TNF

sending so many signals by getting in the way, Enbrel is like a block on TNF

hence why it is called an anti-TNF drug, by doing this it calms down the

inflammation and is one of the reasons it is so good for the inflammation of

our joints.

This is obviously great, but a side effect of this is that TNF is now being

blocked from telling us when something is seriously wrong (Our alarm is not

turned up) So for example if you get a tumour growing in your body the usual

immune response will not be as swift, The reason being is that the TNF is

being quietened down so cannot warn our immune system to attack the tumour.

It also is the same for infections hence why people have to come off Enbrel

and other anti-TNF drugs just so that the immune system responds in the

right way to the threat posed. If you do not come off the Enbrel our immune

system would not be warned and the infection (if serious) could then go on

to overcome our bodies and even KILL us. This is a medical fact and is why

it is so important to see a Dr When taking Enbrel if you have any infections

no matter how minor you may think the infection is.

As for the actual improvements on patients, both MTX and Enbrel have good

effects:-

1 in 3 people who take MTX will find that it improves there PA and for some

it even can put them into medical remission.(meaning that they have no

symptoms of their disease)

1 in 3 people who take Enbrel will also find that it improves there PA, but

on a much quicker time scale, again many people who have taken Enbrel have

found that it has put them into a medical remission.

The major difference is the cost, and the Years that they have been

clinically used in patients with our disease, MTX has been around for over

40 years and has a proven track record in Auto-immune related diseases,

especially in regards to Psoriasis. The figures have not changed over 40

years and it still helps 1 in 3 people taking it, and for these people, they

are quite happy to live with some of the side effects that may occur with

MTX, a lot of these people actually have no side effects. MTX also costs

about 5 pounds per week to use.

Enbrel has been around for about 7 years and so far has also got a proven

track record in managing the pain of our disease and this is also about the

1 in 3 range of people that it helps, again a lot of people on Enbrel have

no side effects at all. However Enbrel costs about 250 pounds a week to

use.

From a medical point of view it makes sense to start with the cheaper option

as there is a 1 in 3 chance that this option will have a good effect on the

disease. The myth doing the rounds is that Enbrel is far superior to MTX

when in fact this is just plainly untrue. It may be slightly better in

figures terms but the percentages are not as big as everybody thinks they

are. Everybody wants the more expensive option because they think that to be

more expensive it must be better, but again to the people that are taking

MTX quite happily, they will never know because they don't need to try the

Enbrel.

As for the risks with cancer and Enbrel this is again under investigation,

There is a 3 times risk of someone taking Enbrel of developing lymphoma than

there is of someone who is not. SOURCE: FDA OCTOBER 2004. In the first

trials with Enbrel, of 5500 patients taking the drug 270 were diagnosed with

lymphoma, this is why it is being closely monitored and I believe a

precautionary label has been added to all anti-TNF drugs as of October 2004.

So as you can see it's a very difficult choice to make when taking any of

these drugs as they both have major side effects if not used and monitored

properly. However for the people that have a positive result and no side

effects it can be life changing.

Micky

[Guest guest]

Dear , You are really very lucky that Enbrel works so well for you.

Like I said below I'd have given several years of my life it would have

worked as well for me. When you reach a certain level of pain and misery,

you get really desperate to do anything to improve the quality of your life.

I'm lucky that Arava has helped me some. I haven't gotten the relief you

have and there is still no way I could work, even part time now. I was

really hoping I could increase the dosage, but I found out it only goes as

high as 20mg and that's it. So far I've been ok on all the blood tests, I

think I have one more and then I reach the 6 month mark. My doctor thinks

I've reached the peak effectiveness too, which was sort of a downer...lol.

I can't tell if Arava isn't working as well as it was in the beginning, or

I've gotten used to the increase of energy and still want more? It's also

really possible that now that I've got Arava I've managed to decrease my

prednisone from 20mg to 12mg and I'm still trying to go lower. I know I

need to get off of it completely, but life is pretty miserable below 13mg.

Right now I'm having trouble with my skin burning from erythromelalgia. My

hands are almost purple they are burning so bad, especially my left hand. I

can't tell that the injections in my neck are helping the nerve pain either.

I get the last one tomorrow, so I'm hoping it puts me over the edge and I

finally get some relief. I'm also more active on Arava, which is a good

thing. I started out with this group in bed on my laptop and in the past 3

months, I don't think I've even used it once. I'm on the main computer now

and up all the time, so the increased activity while good for me, is

probably also contributing to the hand pain. I have to remind myself all

the time that I have improved when I'm having a bad time.

I think the choice of medication like Kathy said is totally up to each

person. The best we can do is tell each other what works for us and let it

go at that. No one should get upset over that, as long as we don't judge

each other's choices. When you get down to it, that's all life is anyway,

a lot of different choices. I'm just glad we have this group to bounce

ideas off of each other and have a place to go where we can cry, vent or

laugh. I like laughing the most. Take care and hope everyone is feeling as

great as you are .

Love, Fran

In a message dated 12/13/2004 8:23:00 AM Central Standard Time,

fran@... writes:

Even with all of that, I'd give anything to have the results some people

have had with Enbrel. To me it was worth the risk, just to try and feel

so much

better

Fran -

I wish that for you too. I think we all know when the time comes when

medication is our only choice. I WANT to work FT at my executive level

job, and I

LOVE my job... there finally came a point where it was trying a very scary

drug that I CHOSE after much research, or quitting my job. I was willing

to take

the risk too... and I think that's what it comes down to. If you are in

intense pain, what are you willing to " risk " to be rid of it? Is living a

possible

quality life again and having your life back worth the risk? For me it

was

like a diabetic refusing meds... not smart. I am so thankful I am where I

am

now and live most of my days 90% pain free.

[Guest guest]

Dear Micky, Do you know how Arava compares in the long run like MTX and

Enbrel? I would have loved to have been able to take MTX, Enbrel, Humira

and even the sulfa drugs for awhile, but my body doesn't react well to some

of those medications. It wasnt' so much side effects as severe allergic

reactions to most of them. Enbrel and Humira both almost killed me and

almost put me in the hospital. So far I " m doing fine on Arava and I've read

most the literature, but nothing like the comparison you have below. Thanks

for the info and if you know anything else on Arava please let me know.

Take care, Fran

Hi and Hi

Enbrel does not treat the cause of PA and neither does MTX. They both

treat

the symptoms of PA. The reason MTX works is because it slows down the

cells

dividing in the body, this is why it has an effect on inflammation in the

body as it slows down the cascade of inflammation that happens with

auto-immune diseases. This is also the reason that MTX cannot be taken

with

people trying for a baby, it will basically slow down the cells dividing,

causing birth defects etc. MTX was first used for cancer because of its

unique ability to slow down cell division, which is why it is used so much

in cancer treatment. Psoriasis is caused by the Keratinocyte cells

dividing

too quickly, again this why MTX helps with psoriasis. It was discovered

that

people with Cancer who took MTX also had a remission (In some cases) of

their psoriasis this why they linked MTX with Psoriasis. Of course people

could not take the high doses of MTX that are used with Cancer patients,

and

that is why the dose for PA/psoriasis is considered safe, if taken under

supervision of your rheumatologist.

[Guest guest]

In a message dated 12/15/2004 7:38:20 AM Eastern Standard Time,

martincoyless@... writes:

" Stand if you can " lol

that was so funny. However I still think Fran should publish her song.

Janet

[Guest guest]

I was told that Enbrel is 50% effective for RA and slightly better for PA.

Maybe 60%. This is in the Immunex literature. If true, would it then be a

more effective and safer choice than MTX?

Hi Ron

The 1 in 3 figure comes from Dr Mease and Dr Ritchlin

who have both said that Enbrel and MTX are effective for 1 in 3 people to a

degree that they can actually start living " a near to normal life " . The

Immunex literature is quoting the ARC 20% Response figures, which I

personally believe is not a true indication of improvements with this

disease. Going from 5/6 joints hurting to 3/4 joints hurting, although is an

improvement, is not a massively beneficial one. I agree that any improvement

is good, but I think for the risks involved in taking drugs of any kind,

needs a better response rate than 1 or 2 joints improving. This is where I

got my 1 in 3 figure from, sorry if I have misled you in anyway.

Regards

Micky

[Guest guest]

I'm curious. Are these doctors quoting any kind of clinical study or is it

just their opinion? Or, are you saying their figures are from further

interpretation of the data for both drugs minus a certain threshold of

effectiveness? If so, I hope they are using the same yardstick. It sounds

like you are saying that Enbrel is more effective using the ARC 20% Response

figures but only equally effective after a threshold of benefit This is

interesting because I believe that Enbrel is most effective with newly

established PA. I would like to see a study using young and newly diagnosed

patients.

Personally, I believe Enbrel should be the first line treatment. You would

see a lot more remissions after a few months use after which they could

reduce or stop the drug. [ ] Psoriatic Arthritis: Enbrel

I was told that Enbrel is 50% effective for RA and slightly better for PA.

Maybe 60%. This is in the Immunex literature. If true, would it then be a

more effective and safer choice than MTX?

Hi Ron

The 1 in 3 figure comes from Dr Mease and Dr Ritchlin

who have both said that Enbrel and MTX are effective for 1 in 3 people to a

degree that they can actually start living " a near to normal life " . The

Immunex literature is quoting the ARC 20% Response figures, which I

personally believe is not a true indication of improvements with this

disease. Going from 5/6 joints hurting to 3/4 joints hurting, although is an

improvement, is not a massively beneficial one. I agree that any improvement

is good, but I think for the risks involved in taking drugs of any kind,

needs a better response rate than 1 or 2 joints improving. This is where I

got my 1 in 3 figure from, sorry if I have misled you in anyway.

Regards

Micky