Re: Introduction and info needed

[Guest guest]

In a message dated 3/12/2004 8:38:34 PM Eastern Standard Time,

michaeldgordon@... writes:

since she has virtually been wracked with the destruction of the RA, should

we then go to Remicaide

I've been on Remicade for about a year. At first it was wonderful. I no

longer needed a cane, didn't have the swelling and severe pain, had energy to

spare and was really able to get things done, i.e., all the common household

tasks which before I couldn't do.

Then in October I got a flu shot. Within 24 hours I had the ear infection

from hell. Never in my life had I experienced anything like this. Not only did

I have shooting pains in my ears, but the bones in back of my ears were so

painful I couldn't even put my head down on the pillow. I went to the Dr., they

gave me a shot of penicillin, then ampicillin pills for 10 days. My RA

flared so badly I thought I'd imagined that brief respite I'd had from the pain.

I

later read that penicillin was absolutely the wrong choice. And I had even

asked the dr and the pharmacist if it was ok with all my other meds. (This was

my GP not my rheumy.)

Since then, I've had two Remicade infusions, the first giving no relief at

all, the second (my dr doubled the dose) gave no relief either. What's more

I've been in a raging flare, I now have an infected tooth, swollen gland, and

loss of hearing intermittently on that side, as well as pain in the ear and

fluid

sloshing around. I had to cancel my scheduled infusion because if you have

an infection you can't take Remicade, and am waiting for my dental apptmt on

Monday (earliest I could get). I now realize that my disease has progressed

since I started on Remicade, it was only masking the symptoms. I believe they

tout it as stopping or slowing the progression of the disease, but I can see it

did not in my case.

The danger with Remicade (and Enbrel and others) is the possibility of

infection. I thought that aspect was no problem as I'm careful about washing my

hands, staying away from sick people, etc, and I never had any problems at

injections sites. Boy was I wrong. Whether or not the flu shot triggered the

ear

infection is not known, it could have just been coincidental, but the dr

(rheumy) said I should always get it anyway. I've never had a reaction before,

but

I'd never been on Remicade before either. I also give myself Metho injections

and take prednisone.

Now that she is no longer pregnant, why hasn't she gone back on AP? I'm not

on it yet, so I can't say that it's worked for me, my dr wants the tooth

pulled before I come back. However, I have decided I won't go back on Remicade.

BTW, unless you have good insurance or deep pockets, Remicade is

prohibitively expensive. My dr bills my insurance company $4,887 and change per

infusion.

In addition, since I'm on full SS disability, I will be put on Medicare the

end of this month. They do pay for Remicade but not for self-injections such

as Enbrel I was told. I don't know if this plays into Carmen's situation or

not, but handy to know just in case.

Hope this helps a little. Good luck.

Jill

[Guest guest]

In a message dated 3/13/2004 7:53:15 AM Eastern Standard Time,

michaeldgordon@... writes:

of course now he's even refusing to give the remicaide as she had a history

of positive tb skin test (0ne) in 1993

Then why doesn't he give her another skin test? That's the first thing they

did when I went on Remicade.

<<It probably too late to start her on the IV AP if it werent too,late I'd

encourage her to at least try it.......>>

Why is it too late? I don't understand? I thought it was never too late.

Some people have been on traditional treatment, everything from gold to

Remicade, for many years before going on AP from what I've read. I do wish

she'd get

another doctor's opinion.

Jill

[Guest guest]

........Your wife certainly needs to look into the AP. I was on

standard meds for eight years. Was a good patient, did all my rheumy asked. At

the end of eight years I could hardly walk or hold a coffee cup. I went on AP

out of shear desperation...and guess what...it REALLY worked.

Obviously your wife is young and needs her health to deal with small

children. The beauty of AP is that you can use it while still on many other

meds.

Slowly, if she is willing to be patient, it will give her much of her life

back. After three years I am pretty much pain free, with only a very few aches

and pains one or two days a month. I am off all other meds. If you think

this might be for her....run....don't walk to the closest doc who is familiar

wdith this. Martha

[Guest guest]

she hasnt went back to the AP because we had relocated during the AP/pregnancy.

The rheumy said that the AP was more for research hospitals and he only stayed

with the known treatment modalities......... of course now he's even refusing to

give the remicaide as she had a history of positive tb skin test (0ne) in

1993..... since then she has had annual chest x rays without problems.... so the

rheumy is not smart enough to give her the meds.... afraid it will be too

risky.......... however the remicaide web site stated that if tb was present

(active or inactive ) then that should be treated before the remicaide.....and

again she does not nor has ever had TB

It probably too late to start her on the IV AP if it werent too,late I'd

encourage her to at least try it.......

thanks for your input

mike

Re: rheumatic Introduction and info needed

In a message dated 3/12/2004 8:38:34 PM Eastern Standard Time,

michaeldgordon@... writes:

since she has virtually been wracked with the destruction of the RA, should

we then go to Remicaide

I've been on Remicade for about a year. At first it was wonderful. I no

longer needed a cane, didn't have the swelling and severe pain, had energy to

spare and was really able to get things done, i.e., all the common household

tasks which before I couldn't do.

Then in October I got a flu shot. Within 24 hours I had the ear infection

from hell. Never in my life had I experienced anything like this. Not only did

I have shooting pains in my ears, but the bones in back of my ears were so

painful I couldn't even put my head down on the pillow. I went to the Dr., they

gave me a shot of penicillin, then ampicillin pills for 10 days. My RA flared

so badly I thought I'd imagined that brief respite I'd had from the pain. I

later read that penicillin was absolutely the wrong choice. And I had even

asked the dr and the pharmacist if it was ok with all my other meds. (This was

my GP not my rheumy.)

Since then, I've had two Remicade infusions, the first giving no relief at

all, the second (my dr doubled the dose) gave no relief either. What's more

I've been in a raging flare, I now have an infected tooth, swollen gland, and

loss of hearing intermittently on that side, as well as pain in the ear and

fluid sloshing around. I had to cancel my scheduled infusion because if you

have an infection you can't take Remicade, and am waiting for my dental apptmt

on Monday (earliest I could get). I now realize that my disease has progressed

since I started on Remicade, it was only masking the symptoms. I believe they

tout it as stopping or slowing the progression of the disease, but I can see it

did not in my case.

The danger with Remicade (and Enbrel and others) is the possibility of

infection. I thought that aspect was no problem as I'm careful about washing my

hands, staying away from sick people, etc, and I never had any problems at

injections sites. Boy was I wrong. Whether or not the flu shot triggered the

ear infection is not known, it could have just been coincidental, but the dr

(rheumy) said I should always get it anyway. I've never had a reaction before,

but I'd never been on Remicade before either. I also give myself Metho

injections and take prednisone.

Now that she is no longer pregnant, why hasn't she gone back on AP? I'm not

on it yet, so I can't say that it's worked for me, my dr wants the tooth pulled

before I come back. However, I have decided I won't go back on Remicade.

BTW, unless you have good insurance or deep pockets, Remicade is prohibitively

expensive. My dr bills my insurance company $4,887 and change per infusion. In

addition, since I'm on full SS disability, I will be put on Medicare the end of

this month. They do pay for Remicade but not for self-injections such as Enbrel

I was told. I don't know if this plays into Carmen's situation or not, but

handy to know just in case.

Hope this helps a little. Good luck.

Jill

[Guest guest]

Hi Mike! Geoff here.

You wrote:

" It probably too late to start her on the IV AP if it werent too,late I'd

encourage her to at least try it....... "

It's never too late to start down the right road. You may not get what you

would have earlier, you may not even get to where you want to be, but the

route itself will be more rewarding, and less taxing, than the road she is

on.

If you are interested in the AP using Rx drugs, there are many competent

GP's who will aid your wife. If you seek the help of those considered

" leaders " in the field, choose your part of the country and go, e.g., in the

West you may want to see Dr. Franco in Riverside, in the Midwest, Dr.

Mercola, etc.

Just remember these simple things: as long as she has life, it is never too

late to make that life better; but it is always too late to make it worse

once you know that is where the road you're on will go.

Geoff

soli Deo gloria

www.HealingYou.org - Your nonprofit source for remedies and aids in fighting

these diseases, information on weaning from drugs, and nutritional kits for

repairing adrenal damage; 100% volunteer staffed.

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