Re: TNF-a inhibitor, Etanercept

[Guest guest]

Hi Marti,

I've not tried Etanercept but I did try another TNF-a drug called Humira. I've

had a bit of an email correspondance with Dr Kerr (my blood's gone into his

study cohort).

Humira made a difference to me (less sore throat/ glands, sore bones) but I

could not afford to continue. Also the doc I was seeing died.

Kindest regards,

Annette

__________________________________________________________

Sent from .

A Smarter Email http://uk.docs./nowyoucan.html

[Guest guest]

>

> Hi Marti,

>

> I've not tried Etanercept but I did try another TNF-a drug called

Humira. I've had a bit of an email correspondance with Dr Kerr (my

blood's gone into his study cohort).

>

> Humira made a difference to me (less sore throat/ glands, sore

bones) but I could not afford to continue. Also the doc I was seeing

died.

>

> Kindest regards,

> Annette

Hi Annette,

How exciting that your blood was part of his work. Cool!

Did you start Humira because of Dr. Kerr or your Doc? What kind of

Doc was your Doc - neuro, rhemy?

Would you like to get back on a drug like this? Were there any side

effects?

Thanks,

Marti

[Guest guest]

" marti_zavala " <marti_zavala@...> wrote:

>

>

>...a TNF-a inhibitor?

Has anyone had cytokine and other inflammatory factor analysis?

was that serum or ?? genetic?

where did you have it done?

cost?

was it ordered by an MD and covered by insurance?

or was it considered " not necessary " or just research so not

covered?

Carol W.

[Guest guest]

annette barclay wrote:

>I did try another TNF-a drug called Humira.

http://www.humira.com/

I've been very curious about TNF inhibitors, but am wary

for myself due to family history of congestive heart failure

(alluded to in the side effects here).

Carol W.

[Guest guest]

> >I did try another TNF-a drug called Humira.

>

> http://www.humira.com/

>

> I've been very curious about TNF inhibitors, but am wary

> for myself due to family history of congestive heart failure

> (alluded to in the side effects here).

>

> Carol W.

>

I found this today on wiki:

" Tumor necrosis factor-alpha (TNFá) is a cytokine produced by

monocytes and macrophages, two types of white blood cells. It

mediates the immune response by increasing the transport of white

blood cells to sites of inflammation, and through additional

molecular mechanisms which initiate and amplify inflammation.

Inhibition of its action by etanercept reduces the inflammatory

response which is especially useful for treating autoimmune

diseases. "

I guess Kerr is applying this to CFS in order to downregulate TH2.

Humira sounds worse than Etanercept but it had issues as well. I

wonder what would predispose someone to the side effects.

I also would be curious to know how cytokines are tested. The only

thing I have ever had tests beyond mainstream white blood cells is

Natural Killer cells, and had to pull teeth (except for Salvato -

she runs this test every 6 weeks).

Marti

[Guest guest]

Humira sounds worse than Etanercept but it had issues as well. I

wonder what would predispose someone to the side effects.

Marti

Marti,

If you go to the Humira site listed in the above post you will see

that INFECTION is the issue that predisposes one to the serious side

effects of Humira. No one with cfids, fibro, RA, psoriasis, any so-

called autoimmune disease should be taking Humira. Well, not unless

they want to die young.

We all have infections at the root of our diseases. We need to get on

antibiotics and antivirals, or at least garlic to kill the germs,

worms and viral stuff. Garlic may work for some of our infections

just like it works for vampires. (I am being silly. Do not write me

about this.)

Here is the quote from the Humira weblink.

Tell your doctor if you think you have an infection, are being

treated for an infection, have signs of an infection (such as a

fever, cough, or flu-like symptoms), have any open sores on your

body, have warm, red, or painful skin, get a lot of infections or

have infections that keep coming back, have or had hepatitis B

infection, take the medicine Kineret (anakinra), have TB or have been

in close contact with someone who has TB, have lived in an area where

TB or histoplasmosis is common, or were born in, lived in or traveled

where there is more risk for getting TB. Your doctor should test you

for TB before starting HUMIRA. If your doctor prescribes any medicine

for the treatment of TB, you should start taking it before starting

HUMIRA and take the full course of TB medicine prescribed.

After starting HUMIRA:

Call your doctor right away if you get an infection, or any sign of

an infection including a fever, feeling very tired, cough, flu-like

symptoms, warm, red or painful skin or if you have any open sores on

your body. HUMIRA can make you more likely to get infections or make

any infection that you may have worse.

Possible side effects of HUMIRA:

Serious side effects, which sometimes lead to death, have happened in

patients taking HUMIRA.

Serious infections. These infections include TB (tuberculosis) and

infections caused by viruses, fungi, or bacteria.

a Carnes

[Guest guest]

>

>

> Humira sounds worse than Etanercept but it had issues as well. I

> wonder what would predispose someone to the side effects.

> Marti

>

> Marti,

> If you go to the Humira site listed in the above post you will see

> that INFECTION is the issue that predisposes one to the serious

side

> effects of Humira. No one with cfids, fibro, RA, psoriasis, any so-

> called autoimmune disease should be taking Humira. Well, not

unless

> they want to die young.

>

> We all have infections at the root of our diseases. We need to get

on

> antibiotics and antivirals, or at least garlic to kill the germs,

> worms and viral stuff.

Hi a,

I am in agreement with you, Humira looks inappropriate for our

population. We have infections and several apiece. I wonder why Dr.

Kerr is attempting this in his current study? I respect his work so

I am not dissing him in any way, just trying to understand.

Annette, can you shed any light on this?

I agree the inflammation is a big issue, which is what TNFa creates

but it seems here the medicine is the poison. I was going to

attempt to find TH1/TH2 modulators in order to duplicate his

approach. Both drugs are immunosuppressants.

Can anyone see, based on the summary I posted yesterday, why this

study would have made it this far?

Marti

[Guest guest]

Hi Marti, Carol and all,

 

I had no bad side effects from the Humira at all. Before the drug was prescribed

I had blood tests which showed high TNF-a and other immune system abnormalities.

TB testing was done.

 

I also had IVIG which had no effect on me at all. I also do well on steroids. My

diagnosis is acute onset M.E. (as defined by Ramsay).

My condition returned to normal after the Humira ended - except for the sore

bones which disappeared and has not come back.

 

What people must understand is that I am well past the point where my life has

any meaning. Obviously, I want a drug to cure me not harm me (and I've been

harmed by plenty of drugs and supplements/treatments). I know that my attitude

will be difficult to understand. If I could even have 5 years of having a

" normal " life before I die I'd go for that.

 

As an old timer of over 25 years of M.E. and not even the hint of a cure /

remission I'm happy to try things out - with caution as well. I'm short of funds

so when these types of oppertunities come along I grasp them.

 

The use of the drug was experimental and in the UK so I can't comment on

insurance.

 

Kindest regards,

Annette

__________________________________________________________

Sent from .

A Smarter Email http://uk.docs./nowyoucan.html

[Guest guest]

Hi Marti and a,

What is " our population " and how does it come down to the two of you to try and

come up with the answers?

I have shared my experience with an experimental treatment but because it

doesn't fit into your own personal mindset of ideas, you choose to disregard it.

We have a lot of theories on causes and treatments of CFS, CFIDS and ME - we

always have.

I've seen a lot of CFS, CFIDS and ME theories crash and burn in my lifetime.

I have been made a lot worse by some of the treaments suggested on this group

and I do understand that we are not a heterogenous population.

My information may only be relavent to people with M.E. or it may only be

relavent to me.

Dr Kerr supports a trial in anti-TNF-a drugs and based on my experience I would

also support it. If people have failed to control infections (and god knows

enough have tried) they can investigate other solutions. We only have one life.

Kindest regards,

Annette

__________________________________________________________

Sent from .

A Smarter Email http://uk.docs./nowyoucan.html

[Guest guest]

Hi Annette,

I posted this originally because I was interested in the study.

Also, trying to get the discussion back to EXPERIMENTAL topics.

But those who want to talk about experimental subjects don't post

anything or don't join in the discussion.

Please don't be offended by my last post. I am right there with you

on trying whatever is possible. I didn't mean to suggest that this

was an inappropriate treatment for you, I am just confused as to the

train of thought which is where I was going.

......to try to understand this new experiemental treatment.

Thanks for your responses. I have more questions but I will keep

them to myself as I have offended you. My apologies.

I suppose the group is going to go on now for a week about how this

has changed to a support group....

sigh,

Marti

>

> Hi Marti and a,

>

> What is " our population " and how does it come down to the two of

you to try and come up with the answers?

>

> I have shared my experience with an experimental treatment but

because it doesn't fit into your own personal mindset of ideas, you

choose to disregard it. We have a lot of theories on causes and

treatments of CFS, CFIDS and ME - we always have.

>

> I've seen a lot of CFS, CFIDS and ME theories crash and burn in my

lifetime.

>

> I have been made a lot worse by some of the treaments suggested on

this group and I do understand that we are not a heterogenous

population.

>

> My information may only be relavent to people with M.E. or it may

only be relavent to me.

>

> Dr Kerr supports a trial in anti-TNF-a drugs and based on my

experience I would also support it. If people have failed to control

infections (and god knows enough have tried) they can investigate

other solutions. We only have one life.

>

> Kindest regards,

> Annette

>

>

> __________________________________________________________

> Sent from .

> A Smarter Email http://uk.docs./nowyoucan.html

>

[Guest guest]

Annette wrote:

>

> What is " our population " and how does it come down to the two of

you to try and come up with the answers?

>

> I have shared my experience with an experimental treatment but

because it doesn't fit into your own personal mindset of ideas, you

choose to disregard it.

Annette,

I see this list is clearly not a support group. I don't read most of

the posts here, nor do I usually post a lot. I like to think

my " personal mindset " is based on hard scientific evidence.

My comment on Etanercept was due to reading the side effect risks and

the scientific reality that anyone with chronic infection is not to

be given Etanercept. Dr. Forrester, Dr. Jemsek, Dr. Shoemaker, Dr.

Nicolson, Dr. Stratton, Dr. Burrescano, Dr. . Dr. Teitelbaum,

Dr. Montoya, Dr. Lerner - need I list more? - all find we patients

are chronically infected with mycoplasmas, c. pneumoniae, HHV6, EBV,

borrelia, babesia, bartonella and some with MRSA colonizations.

I am generally well respected in the cfids and Lyme communities for

my objective overview of the diseases, not for my personal mindset.

I am also religious, but try to document even my religious beliefs.

Do not close your posts " respectfully " when they are not respectful

or objective. I get an intutive sense of disrespect when such posts

are made.

a Carnes

[Guest guest]

annette barclay <annettebarc@...> wrote:

> I had no bad side effects from the Humira at all.

> Before the drug was prescribed I had blood tests

> which showed high TNF-a and other immune system

> abnormalities. TB testing was done.

>  

> My condition returned to normal after the Humira ended -

> except for the sore bones which disappeared and

> has not come back.

> Kindest regards,

> Annette

That's great, Annette. I think when we consider various

inhibitors, antagonists, or agonists, it may be a question

of DEGREE. If an inhibitor inhibits too much with a usual dose,

maybe dialing back with a small amount of the inhibitor might

be helpful without being harmful. This might mean using

smaller amounts than anyone thought would be effective.

Food for thought anyhow, rather than a blanket yes/no.

Carol W.

[Guest guest]

> I've seen a lot of CFS, CFIDS and ME theories crash and burn in my

lifetime.

>

> I have been made a lot worse by some of the treaments suggested on

this group and I do understand that we are not a heterogenous

population.

>

> My information may only be relavent to people with M.E. or it may

only be relavent to me.

>

> Dr Kerr supports a trial in anti-TNF-a drugs and based on my

experience I would also support it. If people have failed to control

infections (and god knows enough have tried) they can investigate

other solutions. We only have one life.

>

> Kindest regards,

> Annette

Hi Annette,

Again, I want to apologize for sounding so judgemental. I was just

caught off guard by the contradictions on the two drugs.

The exciting part is that perhaps this could be a way to knock out

all viral elements, all bacterial elements and all stealth

bacterial/viral elements without damaging the gut bacteria.

This would eliminate the long term antibiotic treatments and no

liver issues from anti virals, also long term.

Thanks for sharing, sorry to jump all over you.

Marti