Re: My experiences.

April 9, 2005

Jenni,

Thank you for writing your story. I really enjoyed reading your true feelings about the meds. I feel the same way. I have been bashed and told how crazy I am to stop meds....but I feel so much better. Like you I was on MTX, Enbrel, pred and a bunch of other stuff. I was so drugged and sick. It was like my doc just keep adding more meds to fight the side effects of what I was already taking.

I did some lifestyle changes..which I needed to do. Started with lapband weight loss surgery, good diet, exercise, plenty of water, stress reduction and stopping all these darn meds. So far so good. I was in remission totally with no symptoms for almost a year. Now I am beginning to get symptoms and they are back with a vengeance. I am dreading even going to see my rheummy. I hate this doctor.

Plus with the withdrawal of Bextra..the only NSAID that I can take I am afraid this nutball doc with prescribe some med that will either kill me or at least put me in the hospital with bleeding ulcers. I too have been looking at alternative treatments. Some are just total quackery..but some look OK....I am still looking. I may restart my evening primrose oil and see what happens.

I just wished my family doc could at least treat me.

Toni

In a message dated 4/9/05 5:04:07 P.M. Central Daylight Time, Rheumatoid Arthritis writes:

Date: Sat, 09 Apr 2005 17:11:13 -0400 From: Jenni <chaospearl@...>Subject: My experiences.Here's some experience with medication from the flip side of the coin...

April 10, 2005

Sure sad to hear that, Toni ((( offers gentle hugs )))). So why do you have to see this doc if you hate him?

kins

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

From: aclavern33@...

Date: 04/09/05 18:46:16

Rheumatoid Arthritis

Subject: Re: My experiences.

Jenni,

Thank you for writing your story. I really enjoyed reading your true feelings about the meds. I feel the same way. I have been bashed and told how crazy I am to stop meds....but I feel so much better. Like you I was on MTX, Enbrel, pred and a bunch of other stuff. I was so drugged and sick. It was like my doc just keep adding more meds to fight the side effects of what I was already taking.

I did some lifestyle changes..which I needed to do. Started with lapband weight loss surgery, good diet, exercise, plenty of water, stress reduction and stopping all these darn meds. So far so good. I was in remission totally with no symptoms for almost a year. Now I am beginning to get symptoms and they are back with a vengeance. I am dreading even going to see my rheummy. I hate this doctor.

Plus with the withdrawal of Bextra..the only NSAID that I can take I am afraid this nutball doc with prescribe some med that will either kill me or at least put me in the hospital with bleeding ulcers. I too have been looking at alternative treatments. Some are just total quackery..but some look OK....I am still looking. I may restart my evening primrose oil and see what happens.

I just wished my family doc could at least treat me.

Toni

In a message dated 4/9/05 5:04:07 P.M. Central Daylight Time, Rheumatoid Arthritis writes:

Date: Sat, 09 Apr 2005 17:11:13 -0400 From: Jenni <chaospearl@...>Subject: My experiences.Here's some experience with medication from the flip side of the coin...

April 10, 2005

Cause he is the only one on my plan...there is another but they are all buddies so you can't switch...the other doc will not take you if you have seen one of his partners....so I am stuck with the bonehead doc that I absolutely hate.. I only keep going cause he fills out long term disability paperwork that keeps my checks coming.

Toni

In a message dated 4/9/2005 10:43:00 PM Central Daylight Time, Rheumatoid Arthritis writes:

Date: Sat, 9 Apr 2005 18:55:25 -0500 (Central Daylight Time) From: "kins, learning to love my 40's " <farsgraphics@...>Subject: Re: Re: My experiences.Sure sad to hear that, Toni ((( offers gentle hugs )))). So why do you haveto see this doc if you hate him? kins

April 10, 2005

I prefer

q-tips.

LOL

Jenni I

sure wish I had been sitting in the same room when you said this.

People

always tell me I talk like this and I would charter a bus to atlantis to hear

someone else do it.

Things

are so cold around my ears and I don’t have the energy to offer anything

myself for the moment.

Love/peace/a

good chat

yellow

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

From: Jenni

[mailto:chaospearl@...]

Sent: Saturday, April

09, 2005 5:11 PM

To:

Rheumatoid Arthritis

Subject: My

experiences.

Here's some experience with

medication from the flip side of the coin...

I've been on and off DMARDS for ten

years. I don't honestly think I could remember every single one my

pediatric rheumatologist tried me on, or for how long... he seemed to care more

about immediately starting patients on the latest treatments as they became

available, so that he could remain on the cutting edge of his field.

Regardless of whether I'd only been trying the previous " latest

treatment " for a couple months.

At various times I was on MTX oral,

Cyclosporine, Imuran, MTX injectable, gold, Cytoxin, and Enbrel... the past

couple of years (new doctor) I've also done Humira and Remicade.

I never responded well to any of the

treatments. The only thing that legitimately helped was prednisone, and

I've explained before with much bitterness what it ended up doing to me.

I had a shoulder replacement back in

January, and because of that I had to halt the Remicade infusions for a

while. And now... to be honest I don't have the will to start up

again. I've been off MTX for several months and I don't think wild

terriers could drag me back to that stuff. I feel 100 % better now that

it's finally out of my system. I'm not so queasy nauseated all the

time. I can eat food! Real food that tastes good and has salt and

sugar and white flour and red meat. I don't have to struggle to force

down that nasty Ensure crap to keep my weight in triple digits. I have

double the energy and I'm not sleeping 12 hours a night and napping in the

afternoons. I didn't realize what MTX had been doing to me until I

stopped taking it. I'm not DYING anymore... because it's important

to remember that MTX is chemotherapy and its purpose is to kill. KILL

KILL KILL! If you're lucky it kills your disease more quickly than it

kills you, so you feel better, but do not forget that it is killing you at the

same time.

I've been taking between 15 and 25mg

of prednisone every day for the past ten years or longer. I began

tapering it in February, and I've been at 8mg for months now. Sometimes I

lose my strength and take more, and sometimes I grit my teeth and take

less, but 8mg or thereabouts is my baseline " normal " dose now.

I had been taking Bextra for some

time, but now I've switched to Mobic after COX-2s were entirely removed from

the market. I don't notice much of a difference. Sometimes I forget

my dose and I barely notice that. I may stop taking it entirely to see if

it makes any difference in my daily pain, and I don't really think it

will. That's one less medication!

My rheumatologist recently sent me

to a pain management clinic where the doctors specialize in treatment of PAIN

and not the diseases that cause it. I don't have to take Vicodin anymore.

Now I have something called a Duragesic fentadyl patch -- it's similar to the

patches used by people to quit smoking, only these are slow time-release

narcotic patches instead of nicotine. I know logically that I'm receiving

the same amount of pain medication I was before, but it somehow FEELS better to

me because I don't have to take any pills or keep track of doses or refills or

remember to bring medication with me when I leave the house. I just slap

the patch on and completely forget about it.

So... in the past couple of months

I've gone from MTX doses every week and Remicade infusions every month and 25mg

prednisone and Bextra and several Vicodin every day... down to 8mg

prednisone. That's it. I take my four little pills once at night and

once in the morning and that's it. I feel a thousand times better and

healthier and hungrier. I'm finally going to begin Tai Chi classes next

week, something I've wanted to do for a long time but was never able to.

My little story just goes to show how

different people are. For a lot of you, the heavy medication I used to

take is a lifesaver, and it's the only thing that allows you to function and

live your life without debilitating pain. But for me it was the CAUSE of

a lot of my pain and misery, and I feel so much better now that I'm not

poisoning my body with artificial toxins. I also know that for a lot

of you, avoiding salt and sugar and meat and any other food that provides any

kind of pleasure whatsoever has controlled your pain better than prednisone

ever could. For me, my diet was actually a large contributor to my

fatigue and nausea and gastrointestinal problems, and my constant battle to

keep on enough weight to be healthy. I basically wasn't eating... the MTX

made me sick all the time and I was keeping the Chinese restaurant in business

by ordering quantities of tofu vegetable soup because it's the only thing that

stayed down. A couple weeks after I quit the chemotherapy drugs, I

was able to eat lamb chops and French fries and fettucine

alfredo again, and the sudden influx of nutrition in turn has made me feel

much healthier and more energetic as I lose that " sickly pallor "

of the Nausea Diet.

I don't know what makes one person

different from another. Sometimes it makes me despair for us, because

everyone is always trying to push the treatments (or lack thereof) that helped

YOU, and those same things might make ME even sicker.

The only advice I can give everyone

is to try everything you hear about, but at the same time, don't

listen to people who say it always works or it never works. Beware of the

" scientific studies " people send you to look at... if I'm convinced

Shark Cartilage is a miracle cure, do you really think I will cite fair and

unbiased studies that don't prove my agenda? Nope. I'm going to

show you the 1 study out of 50,000 that was contracted by the Shark Hunters

Association of Iceland, which somehow mysteriously PROVES that people taking

cartilage tablets daily show great improvement. For every study someone

sends me about how eating only Kleenex and fiberboard (the pressed kind; you

should never eat the glued kind because there's a slight chance that might

taste good) will halt the body's production of poisonous chemicals, I can cite

a baker's dozen studies that show the benefits of a balanced diet including red

meats and sugars.

But does that mean the shark

cartilage never works? Does that mean the Kleenex diet never works?

No. It means they don't always work, and they're not really any more

likely to work than MTX or Remicade, two more common treatments that also don't

always work. This disease is a crapshoot. If something worked for

everyone -- if something worked for MOST people, or even HALF the people,

rheumatoid arthritis wouldn't be the hell that it is. Chances are that

new treatment that Sally Jane on this list swears gave her back her life...

will only make you miserable. But you should try it anyway, because what

if it works? You haven't lost anything by trying (unless it's the " NO "

diet in which case you might be happier just shooting yourself) and you may

have found something that will produce miracles for you where everything else

failed.

I'll get off my soap box now.

love to all,

Jenni

April 10, 2005

Jenni I loved your "soap box" explanations and I have a rebuff for you.

If what you are doing.......regardless of what it is, makes you unhappy then it probably won't work for you.

Health is not just physical, it's mental as well, so if you put yourself on medications and aren't happy about them, there is a good change these meds won't work. If you put yourself on a restricted diet and your belief is that you really want the things you are denying yourself then it won't work for you because mentally you feel cheated............Does this make sense? We need to do what seems right for us and makes sense, but as well it must be something that we do willingly and with belief, again physical and mental wellness.

Dorey

www.LivingWithRheumatoidArthritis.com

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

From: Jenni

Rheumatoid Arthritis

Sent: Saturday, April 09, 2005 2:11 PM

Subject: My experiences.

Here's some experience with medication from the flip side of the coin...

I've been on and off DMARDS for ten years. I don't honestly think I could remember every single one my pediatric rheumatologist tried me on, or for how long... he seemed to care more about immediately starting patients on the latest treatments as they became available, so that he could remain on the cutting edge of his field. Regardless of whether I'd only been trying the previous "latest treatment" for a couple months.

At various times I was on MTX oral, Cyclosporine, Imuran, MTX injectable, gold, Cytoxin, and Enbrel... the past couple of years (new doctor) I've also done Humira and Remicade.

I never responded well to any of the treatments. The only thing that legitimately helped was prednisone, and I've explained before with much bitterness what it ended up doing to me.

I had a shoulder replacement back in January, and because of that I had to halt the Remicade infusions for a while. And now... to be honest I don't have the will to start up again. I've been off MTX for several months and I don't think wild terriers could drag me back to that stuff. I feel 100 % better now that it's finally out of my system. I'm not so queasy nauseated all the time. I can eat food! Real food that tastes good and has salt and sugar and white flour and red meat. I don't have to struggle to force down that nasty Ensure crap to keep my weight in triple digits. I have double the energy and I'm not sleeping 12 hours a night and napping in the afternoons. I didn't realize what MTX had been doing to me until I stopped taking it. I'm not DYING anymore... because it's important to remember that MTX is chemotherapy and its purpose is to kill. KILL KILL KILL! If you're lucky it kills your disease more quickly than it kills you, so you feel better, but do not forget that it is killing you at the same time.

I've been taking between 15 and 25mg of prednisone every day for the past ten years or longer. I began tapering it in February, and I've been at 8mg for months now. Sometimes I lose my strength and take more, and sometimes I grit my teeth and take less, but 8mg or thereabouts is my baseline "normal" dose now.

I had been taking Bextra for some time, but now I've switched to Mobic after COX-2s were entirely removed from the market. I don't notice much of a difference. Sometimes I forget my dose and I barely notice that. I may stop taking it entirely to see if it makes any difference in my daily pain, and I don't really think it will. That's one less medication!

My rheumatologist recently sent me to a pain management clinic where the doctors specialize in treatment of PAIN and not the diseases that cause it. I don't have to take Vicodin anymore. Now I have something called a Duragesic fentadyl patch -- it's similar to the patches used by people to quit smoking, only these are slow time-release narcotic patches instead of nicotine. I know logically that I'm receiving the same amount of pain medication I was before, but it somehow FEELS better to me because I don't have to take any pills or keep track of doses or refills or remember to bring medication with me when I leave the house. I just slap the patch on and completely forget about it.

So... in the past couple of months I've gone from MTX doses every week and Remicade infusions every month and 25mg prednisone and Bextra and several Vicodin every day... down to 8mg prednisone. That's it. I take my four little pills once at night and once in the morning and that's it. I feel a thousand times better and healthier and hungrier. I'm finally going to begin Tai Chi classes next week, something I've wanted to do for a long time but was never able to.

My little story just goes to show how different people are. For a lot of you, the heavy medication I used to take is a lifesaver, and it's the only thing that allows you to function and live your life without debilitating pain. But for me it was the CAUSE of a lot of my pain and misery, and I feel so much better now that I'm not poisoning my body with artificial toxins. I also know that for a lot of you, avoiding salt and sugar and meat and any other food that provides any kind of pleasure whatsoever has controlled your pain better than prednisone ever could. For me, my diet was actually a large contributor to my fatigue and nausea and gastrointestinal problems, and my constant battle to keep on enough weight to be healthy. I basically wasn't eating... the MTX made me sick all the time and I was keeping the Chinese restaurant in business by ordering quantities of tofu vegetable soup because it's the only thing that stayed down. A couple weeks after I quit the chemotherapy drugs, I was able to eat lamb chops and French fries and fettucine alfredo again, and the sudden influx of nutrition in turn has made me feel much healthier and more energetic as I lose that "sickly pallor" of the Nausea Diet.

I don't know what makes one person different from another. Sometimes it makes me despair for us, because everyone is always trying to push the treatments (or lack thereof) that helped YOU, and those same things might make ME even sicker.

The only advice I can give everyone is to try everything you hear about, but at the same time, don't listen to people who say it always works or it never works. Beware of the "scientific studies" people send you to look at... if I'm convinced Shark Cartilage is a miracle cure, do you really think I will cite fair and unbiased studies that don't prove my agenda? Nope. I'm going to show you the 1 study out of 50,000 that was contracted by the Shark Hunters Association of Iceland, which somehow mysteriously PROVES that people taking cartilage tablets daily show great improvement. For every study someone sends me about how eating only Kleenex and fiberboard (the pressed kind; you should never eat the glued kind because there's a slight chance that might taste good) will halt the body's production of poisonous chemicals, I can cite a baker's dozen studies that show the benefits of a balanced diet including red meats and sugars.

But does that mean the shark cartilage never works? Does that mean the Kleenex diet never works? No. It means they don't always work, and they're not really any more likely to work than MTX or Remicade, two more common treatments that also don't always work. This disease is a crapshoot. If something worked for everyone -- if something worked for MOST people, or even HALF the people, rheumatoid arthritis wouldn't be the hell that it is. Chances are that new treatment that Sally Jane on this list swears gave her back her life... will only make you miserable. But you should try it anyway, because what if it works? You haven't lost anything by trying (unless it's the "NO" diet in which case you might be happier just shooting yourself) and you may have found something that will produce miracles for you where everything else failed.

I'll get off my soap box now.

love to all,

Jenni

April 10, 2005

Jenni, I didn't read your post real carefully but I get the idea that you have tried all sorts of conventional western medicine with out success and you are sceptical of "one treatment fits all" claims. I'm pretty well controlled with Western medicine so I'm not looking for alternatives. However, I recognize that my medicines might fail me at any time so I might need to move to something else.

I think three different approaches have been successful for some people but no approach is good for everyone. These are diet and nutrition, antibiotic therapy, and Chinese medicine including acupuncture and acupressure. For diet and nutrition I refer you to Dorey who posts here and has a web site www.LivingWithRheumatoidArthritis.com but I haven't studied her web site extensively. For antibiotic therapy I suggest Road Back Foundation http://www.roadback.org but again I haven't studied it extensively. I have no preferred reference for Chinese but some people find it very helpful. I think you are a prime candidate to try something else and I hope you have success with it. God bless.