No meds

[Guest guest]

Sharon,

I think you are sooo right. Doc's don't listen ..You are supposed to just do

as they say no questions asked!

I live in the body..I should have some say.

Carol

[ ] no meds

Has anyone elected to not take meds, aside from over the counter pain

releif?

I am so sick and tired of being a toxic waste dump for biologics,

hormones, and the lot.

If anyone has,,, how do you cope? Are you able to work?, does this

decision affect your insurance ???

I think my Rheumy is upset with me bacause I am being difficult. I

have stopped Enbrel,, got sick as a dog with the flu,,, and no

defence. So I stopped it.. I am still sitting on the fence regarding

re-establishing it. It quite frankly scares the crap out of me.

Arthrotec, Vioxx, Gold, Salphasalazine,, all no effect.

All I want is percocet for pain,,, but my physicians are reluctant to

supply it. sound like a drug dependant junkie, I dont care, I only

take it when i need it,,, and i have a pretty good pain tolerance.

I hate not having control over my treatment, I hate having my values

undermined. Hypocrates said,,, harm none,,,, which as a pagan, is my

first and most foremost commandment.

No cause no cure,, my eye !! Because funds are not allocated into

research, I am supposed to swallow any chemical garbage they stir up

to fatten up their bottom lines?

The Rheumies,,, they are just as bad,,

As a person who suffers daily from this dis-ease, I have done my

research. What gauls me to no end, is my physicians reluctance to

entertain my ideas on treatment. I mentioned Dr Browns Low dose

antibiotic treatment for RA, and she pooh poohed me off.

If Rheumies where not so hard to come by, I would ditch her in a

heartbeat. But holy cow,,,, where is the partnership in this deal?

I am not stupid, I dont had over my well being blindly, and I want to

be taken seriously. Why to be treated like a " difficult patient " ??

I know I sound mad,,, but I am,, and I am not going to take it

anymore.

Blah Blah Blah,,,,

any other " difficult patients " out there????

go hug a tree

sharron

[Guest guest]

After all the pain and destruction of joints that I have endured over the years,

I will take

my chances with enbrel. I would rather be a toxic dump and live without the

extreme pain,

stiffness and destruction this stupid affliction is capable of. Without enbrel

and anti

inflammatory meds I would be unable to work and live an active lifestyle.

As for taking pain meds... forget that... I can't stand the side affects of most

narcotic

drugs.

I have tasted the worse that this disease can give and I want no part of it!!!!

Tom

>

>

> Has anyone elected to not take meds, aside from over the counter pain

> releif?

> I am so sick and tired of being a toxic waste dump for biologics,

> hormones, and the lot.

>

> If anyone has,,, how do you cope? Are you able to work?, does this

> decision affect your insurance ???

>

> I think my Rheumy is upset with me bacause I am being difficult. I

> have stopped Enbrel,, got sick as a dog with the flu,,, and no

> defence. So I stopped it.. I am still sitting on the fence regarding

> re-establishing it. It quite frankly scares the crap out of me.

> Arthrotec, Vioxx, Gold, Salphasalazine,, all no effect.

>

> All I want is percocet for pain,,, but my physicians are reluctant to

> supply it. sound like a drug dependant junkie, I dont care, I only

> take it when i need it,,, and i have a pretty good pain tolerance.

>

> I hate not having control over my treatment, I hate having my values

> undermined. Hypocrates said,,, harm none,,,, which as a pagan, is my

> first and most foremost commandment.

>

> No cause no cure,, my eye !! Because funds are not allocated into

> research, I am supposed to swallow any chemical garbage they stir up

> to fatten up their bottom lines?

>

> The Rheumies,,, they are just as bad,,

> As a person who suffers daily from this dis-ease, I have done my

> research. What gauls me to no end, is my physicians reluctance to

> entertain my ideas on treatment. I mentioned Dr Browns Low dose

> antibiotic treatment for RA, and she pooh poohed me off.

> If Rheumies where not so hard to come by, I would ditch her in a

> heartbeat. But holy cow,,,, where is the partnership in this deal?

> I am not stupid, I dont had over my well being blindly, and I want to

> be taken seriously. Why to be treated like a " difficult patient " ??

>

> I know I sound mad,,, but I am,, and I am not going to take it

> anymore.

>

> Blah Blah Blah,,,,

>

> any other " difficult patients " out there????

>

> go hug a tree

>

> sharron

[Guest guest]

Yes, i suppose i am a difficult patient. Dr. has recommended MtX for

the past 10 years, but frankly, it scares me. Am taking celebrex,

don't know if it helps or not, but the disease has progressed, and am

not sure whether it would make a difference being on the " hard "

drugs. I really don't know where to go, but am more concerned about

the cure than the disease.

Billie

>

>

> any other " difficult patients " out there????

>

> go hug a tree

>

> sharron

[Guest guest]

Dear Billie,

If you can be more concerned about the meds than the disease then the

disease must be not too bad. I tried it without the meds for a while so

that we (the rheumy and I) could decide on diagnosis. I went off the meds

and couldn't almost move at all. All the lab work was non diagnostic, lucky

me but 2 days of 20 mg of prednisone and one Enbrel shot and I was like new

again. The Enbrel has since quit working and it takes more now but I have

no trouble wanting to take the drugs and I know if a dosage is late. In the

beginning I was not sure if I wanted to take the " hard " drugs but now there

is no doubt in my mind that I am almost willing to try anything to be able

to walk and do at least some of the things I used to love to do. Anne

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

[ ] Re: no meds

Yes, i suppose i am a difficult patient. Dr. has recommended MtX for

the past 10 years, but frankly, it scares me. Am taking celebrex,

don't know if it helps or not, but the disease has progressed, and am

not sure whether it would make a difference being on the " hard "

drugs. I really don't know where to go, but am more concerned about

the cure than the disease.

Billie

>

>

[Guest guest]

In a message dated 3/30/2005 6:10:01 A.M. Eastern Standard Time,

darkart42@... writes:

Sometimes, we get branded as

" difficult " just because we are too complicated to be

dismissed with simple answers.

It's funny...my primary care doctor LOVES that I am a difficult

patient...she says that I keep her on her toes and get her to constantly learn

new

things.

I know they are few and far between, but there ARE doctors out there who can

handle our issues, and actually like to handle them. Maybe try a teaching

hospital, or the National Psoriasis Foundation also has a list of recommended

doctors.

[Guest guest]

I agree that the decision to use the " hard " drugs becomes a lot easier to

make when the severity of the disease becomes unbearable. Ive had thoughts

about the complaints of the Enbrel needles. Which is worse the pain from the

disease you are using the Enbrel for or the pain from the needle to deliver it?

Orin

In a message dated 3/30/05 12:23:08 PM Central Standard Time,

annemills@... writes:

If you can be more concerned about the meds than the disease then the

disease must be not too bad.~~~ In the

beginning I was not sure if I wanted to take the " hard " drugs but now there

is no doubt in my mind that I am almost willing to try anything to be able

to walk and do at least some of the things I used to love to do. Anne

[Guest guest]

Orin,

The pain from the needle lasts only a very brief time each shot, the pain

from the disease is there unrelenting all the time. Anne

I agree that the decision to use the " hard " drugs becomes a lot easier to

make when the severity of the disease becomes unbearable. Ive had thoughts

about the complaints of the Enbrel needles. Which is worse the pain from

the

disease you are using the Enbrel for or the pain from the needle to deliver

it?

Orin

/

[Guest guest]

Your kidding? Right. That's like comparing a fart to an atom bomb or you

really don't suffer from this disease.

Re: [ ] Re: no meds

I agree that the decision to use the " hard " drugs becomes a lot easier to

make when the severity of the disease becomes unbearable. Ive had thoughts

about the complaints of the Enbrel needles. Which is worse the pain from

the

disease you are using the Enbrel for or the pain from the needle to deliver

it?

Orin

In a message dated 3/30/05 12:23:08 PM Central Standard Time,

annemills@... writes:

If you can be more concerned about the meds than the disease then the

disease must be not too bad.~~~ In the beginning I was not sure if I wanted

to take the " hard " drugs but now there is no doubt in my mind that I am

almost willing to try anything to be able to walk and do at least some of

the things I used to love to do. Anne

[Guest guest]

Your funny Ron, I love it, and your right.

Anne, the pain from my dis-ease IS bad, thank you very much.

Which is why i was prescribed " hard core " drugs.

But I would rather take narcotics, then further mess up my already

whacked immune system and stand defenseless against every germ that

heads my way. I have kids in school and work in a hospital, so my

risk is high for infection. I would rather die from Lakota overdose,

or ice pack frostbite then further compromise my health with the

threat of liver failure, cancer, and the like. The insert for Enbrel

is as thick as a phone book, chuck full of nasty information on

this " wonder drug " If this is such a great drug, then why do so many

find it no longer works?,,

Somehow,,, attention to finding the cause and cure has been lost,

only to deal with the symptoms, which to me is wrong, wrong, wrong.

Vioxx, and other medications that have had years and years on the

shelf are now being recalled,,,, because they put patients " at risk "

My point,,,, if I applied for disability benefits, I would not

qualify because I choose not to take disease modifying drugs, and I

resent that my health care is dictated on that level. If I could not

control the symptoms with natural remedies I would not qualify, but

if I could not control the symptoms while taking prescription

medications, I would qualify.

I wish i had your faith that your best interest is being considered.

>

> Your kidding? Right. That's like comparing a fart to an atom bomb

or you

> really don't suffer from this disease.

>

> Re: [ ] Re: no meds

>

>

>

>

> I agree that the decision to use the " hard " drugs becomes a lot

easier to

> make when the severity of the disease becomes unbearable. Ive had

thoughts

>

> about the complaints of the Enbrel needles. Which is worse the

pain from

> the

> disease you are using the Enbrel for or the pain from the needle to

deliver

> it?

> Orin

>

> In a message dated 3/30/05 12:23:08 PM Central Standard Time,

> annemills@p... writes:

> If you can be more concerned about the meds than the disease then

the

> disease must be not too bad.~~~ In the beginning I was not sure if

I wanted

> to take the " hard " drugs but now there is no doubt in my mind that

I am

> almost willing to try anything to be able to walk and do at least

some of

> the things I used to love to do. Anne

[Guest guest]

My experience has been just the opposite. Without boring everyone with my

story again, just let me say that I was told I would completely lose the use

of my hands within 3 months. I was in excruciating pain and thought my life

was over. I went on Enbrel before it was approved for PA. It has been a

miracle for me stopping the progress of the disease, stopping most of the

pain and allowed me to have fingernails again. I have been off and on

Enbrel for 5 years now. Presently I take a maintenance does of 25 mg every

2 weeks;. I have worried about all of the possibilities and side effects.

I have an 8 year old in school and am involved at a university myself so I

have my own level of exposure to consider. ly I have found the results

well worth the risks. Enbrel or another biologic taken early in the disease

can make a big difference in the progression of PA and even cause

remissions. Everyone has to evaluate their risk vs. benefit for their own

situation. In my case the risk has been justified by the improvement in my

health and in my quality of life. Side effects in my case have been

negligible, much less than the side effects I had to deal with on MTX,

Prednisone and other drugs. The Viox controversy is more about lawsuits in

my opinion than patient benefit. Medical research moves in increments. I

doubt if there will be a cure in my lifetime because of the complexity and

nature of the problem but I am very grateful for Enbrel. It does not strip

your immune system. It attenuates it when it is overactive. Ten years ago

I would have been a suicidal cripple without it. RE

[ ] Re: no meds

Your funny Ron, I love it, and your right.

Anne, the pain from my dis-ease IS bad, thank you very much. Which is why i

was prescribed " hard core " drugs. But I would rather take narcotics, then

further mess up my already

whacked immune system and stand defenseless against every germ that

heads my way. I have kids in school and work in a hospital, so my

risk is high for infection. I would rather die from Lakota overdose,

or ice pack frostbite then further compromise my health with the

threat of liver failure, cancer, and the like. The insert for Enbrel

is as thick as a phone book, chuck full of nasty information on

this " wonder drug " If this is such a great drug, then why do so many

find it no longer works?,,

Somehow,,, attention to finding the cause and cure has been lost,

only to deal with the symptoms, which to me is wrong, wrong, wrong. Vioxx,

and other medications that have had years and years on the

shelf are now being recalled,,,, because they put patients " at risk " My

point,,,, if I applied for disability benefits, I would not

qualify because I choose not to take disease modifying drugs, and I

resent that my health care is dictated on that level. If I could not

control the symptoms with natural remedies I would not qualify, but

if I could not control the symptoms while taking prescription

medications, I would qualify.

I wish i had your faith that your best interest is being considered.

[Guest guest]

Thank you Ron, for sharing your experience. As I said earlier, I am

still sitting on the fence about starting the Enbrel again. I suppose

after I get over my " FRUSTRATIONS " , and get over the victim mode and

into the fighting mode again, I can weight those risks again.

It is this group that helps me to make those decisions as my Rheumy

is too busy to entertain counselling my apprehensions or fears.

Thank you again for sharing your experience

Sharron

>

> My experience has been just the opposite. Without boring everyone

with my

> story again, just let me say that I was told I would completely

lose the use

> of my hands within 3 months. I was in excruciating pain and

thought my life

> was over. I went on Enbrel before it was approved for PA. It has

been a

> miracle for me stopping the progress of the disease, stopping most

of the

> pain and allowed me to have fingernails again. I have been off and

on

> Enbrel for 5 years now. Presently I take a maintenance does of 25

mg every

> 2 weeks;. I have worried about all of the possibilities and side

effects.

> I have an 8 year old in school and am involved at a university

myself so I

> have my own level of exposure to consider. ly I have found

the results

> well worth the risks. Enbrel or another biologic taken early in

the disease

> can make a big difference in the progression of PA and even cause

> remissions. Everyone has to evaluate their risk vs. benefit for

their own

> situation. In my case the risk has been justified by the

improvement in my

> health and in my quality of life. Side effects in my case have been

> negligible, much less than the side effects I had to deal with on

MTX,

> Prednisone and other drugs. The Viox controversy is more about

lawsuits in

> my opinion than patient benefit. Medical research moves in

increments. I

> doubt if there will be a cure in my lifetime because of the

complexity and

> nature of the problem but I am very grateful for Enbrel. It does

not strip

> your immune system. It attenuates it when it is overactive. Ten

years ago

> I would have been a suicidal cripple without it. RE

>

[Guest guest]

Hi Anne,

I could be wrong, but you have a medical background so likely you know

more than me, but I was under the impression that MTX DOES go after the

cause of our problem PA and our immune system in overdrive. Right???

Please correct me if that is not the case. Granted MTX is not a cure

in that you have to keep taking it, but for me at least is does seem to

be the " cure " on a regular/ongoing basis.

Interested in hearing back from you.

Stay Well,

[Guest guest]

Must be nice... I am more concerned about living my life to it's fullest. I

might not be alive to see a cure (and I'm only 30!), and if I would have

waited much longer to start Enbrel I definitely would not be able to WALK when

a

cure is found. Let me state that I HATE taking medication and I HATE needles.

It took a lot of soul searching, a lot of pain, and a SED rate over 350 for

me to finally meet with a researcher at Duke and decide on Enbrel. I am NOT an

easy patient... many doctors prescribed MTX to me and I ripped it up in

front of them. I was on Celebrex and it helped for awhile, but the inflammation

came back with a vengance. I certainly am more concerned about a cure than

these pharmaceutical companies coming out with more medications. However, I

don't want to be so hard headed that I become crippled waiting for them to come

up with a cure to this horrible disease. I also believe these drugs that are

finally being made FOR arthritis are the closest thing to a cure that we have

ever had. I have been on Enbrel for almost 3 years and I have been able to

cut down to 1/2 of the recommended dose... without EVER getting sick or having

an infection. (knock on wood)

In a message dated 3/30/2005 6:12:47 AM Central Daylight Time,

billieblancher@... writes:

Yes, i suppose i am a difficult patient. Dr. has recommended MtX for

the past 10 years, but frankly, it scares me. Am taking celebrex,

don't know if it helps or not, but the disease has progressed, and am

not sure whether it would make a difference being on the " hard "

drugs. I really don't know where to go, but am more concerned about

the cure than the disease.

Billie

[Guest guest]

Dear Beth,

In answer to your question, I am one who has been off meds since April and I

will give you my wbc since July: 26.7, 11.8, 2.8, 11.8, and last week it was

3.92 So, yes, it is possible to keep your counts down while you are off meds for

a while. Don't worry about it, your counts will recover when you re-start your

Gleevec. We are watching my counts closely until I start the Ariad trial in

November and are hoping I will not have to use any other therapy until then. I

think Gleevec can sustain you for a while, so enjoy your time without it.

Carpe diem,

Lottie Duthu

[Guest guest]

Bless you - as always ... very heartening! WBC today was 3.9 so all holding

well.

Love beth

Rumi quote for you - 13thc mystic poet

" What strikes the oyster shell does not damage

the pearl. "

From: Lottie Duthu <lotajam@...>

Subject: [ ] No meds

" CML " < >

Date: Wednesday, 29 September, 2010, 18:38

 

Dear Beth,

In answer to your question, I am one who has been off meds since April and I

will give you my wbc since July: 26.7, 11.8, 2.8, 11.8, and last week it was

3.92 So, yes, it is possible to keep your counts down while you are off meds for

a while. Don't worry about it, your counts will recover when you re-start your

Gleevec. We are watching my counts closely until I start the Ariad trial in

November and are hoping I will not have to use any other therapy until then. I

think Gleevec can sustain you for a while, so enjoy your time without it.

Carpe diem,

Lottie Duthu