Re: RD Appt Yesterday/TERY

[Guest guest]

Say, Tery!

Sorry that you have been dealing with so much pain and your 5-year-old

wasn't in the mood to make things easier yesterday. Hope you are feeling

much better today.

I understand why you are upset the outcome of your RD appointment. I know it

must be frustrating that you don't seem to be getting any great results with

Enbrel yet.

Now as far as everyone referring to Remicade and the Prosorba Column as

" last resorts " : in my opinion, this doesn't mean that you are necessarily a

hopeless case or that your body is so destroyed that you must take drastic

measures if it is suggested that you may need to try Remicade or Prosorba.

Not at all! In my mind, I believe from what I read that since these are some

of the newest treatments, they are expensive, and doctors aren't that

familiar with them (they really stick to what they know and have tried and

don't always read the latest research news). Insurance companies don't want

to pay for them until you have tried cheaper, and possibly less effective,

remedies first (which makes me angry). There is also the safety issue. Newer

treatments raise questions about long-term safety. Also, researchers don't

know if they will be effective over the course of many years.

Remicade (infliximab) was first approved in 1998 for use in patients with

Crohn's Disease. My sister-in-law has Crohn's. I am familiar with the

disease. It is a disease that causes inflammation of the small intestine. It

is suspected that it could be an autoimmune disease or a disease cause by a

problem with the patient's immune system. This drug has potential to help

Crohn's and RA and other inflammatory diseases because it is an anti-tumor

necrosis factor substance. The tumor necrosis factor (TNF) is a protein

thought to be produced by the immune system that may cause inflammation.

Because Remicade is new it is expensive. It also has not withstood the test

of time (neither have other drugs such as Enbrel for that matter). I don't

think it's use should be only in a " last ditch effort " sort of situation

though. I really think economics drive these decisions. Again, namely,

insurance companies don't want to pay for it if they don't have to even if

it might be the best drug for you.

Don't take this to mean that I am minimizing your suffering or the serious

nature of your illness. I know you are ill and struggling for relief. I just

don't want you to lose hope. Every person is different. Every body responds

to these treatments in a unique way. And let's face it, nobody knows what

causes these illnesses, much less knows how to cure them. So they just start

with the cheapest, best known drugs and keep working their way through,

hoping along the way that they will find something that will help you. It's

really a game of trial and error. Luckily, better treatments are being

discovered. Researchers wouldn't be looking for new solutions if what we

already have at our disposal were working! Remicade and Prosorba are two

newer, exciting options.

Maybe you will have the same kind of success with Remicade that has. I

have a friend whose mother has had RA for many years and has recently begun

Remicade after years of experimentation with other drugs (and she is in her

70s and still mobile). She said after the first treatment that she noticed a

remarkable difference.

I also hope that you and your doctor can get you some very good pain relief.

You and Kim are really worrying me. Please call the physician and say you

need help because the pain is interfering with your daily activities.

Working and taking care of a family is extremely difficult if not impossible

if you are in constant pain. Can you sleep through the night?

Please feel better and don't despair, Tery!

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

From: <tjones500@...>

< onelist>

Sent: Saturday, April 01, 2000 8:15 PM

Subject: [ ] RD Appt Yesterday

> I had my monthly RD appt yesterday. Things did not go too good. He

agreed

> with me that the Enbrel is obviously not going to work for me. That after

> the 7 or 8 shots most people have seen a difference, but that it can take

up

> to 3 months to achieve the full affect.

>

> At my last visit I asked him about Remicade and Prosorba Cololum (sp). He

> said they were last chance drugs and that we wouldn't worry about those 2

> yet. Well guess now it's time to worry. I go back in 3 weeks instead of

my

> normal month. At that time if the Enbrel hasn't started doing anything we

> are going to go for Remicade.

>

> Just for the heck of it, I called my insurance to see if it was covered

and

> of course there will be a mountain of paperwork involved. Which my RD

said

> he already knew and his office would handle everything for me not to

worry,

> he saw no reason I would not be approved with the list of DMARD's I've

been

> on and have failed.

>

> At this point I just kinda blocked everything else he said out. I know I

got

> my monthly (most months) Kenalog shot and he added B12 to help with my

> fatigue that has been much worse then normal. I guess I'm really freaked

out

> that I have to admit I need a last resort drug. I've never thought of my

RA

> as being that bad (well I've never admitted it to myself).

>

> I totally forgot to ask for stronger pain meds. I take Darvocet now and

it

> just isn't doing a thing for my shoulder and neck, when I take one it

eases

> the pain for about and hour and that's it, since I sit a computer most of

the

> day this just isn't cutting it, so Monday I'm gonna call his office and

ask

> them to call in something for me. That or I'm gonna have to up my

prednisone

> which ever he says. Guess I've got lots of research to do to check out

> Remicade. Tery