RE: Re: Re: /RA question

[Guest guest]

I totally agree with being your own healthcare advocate, which is why I ask

questions here as well as of my rheumatologist. I haven't had a problem

getting appointments. That was another person's discussion. As for my

rheumatologist, he is the top in the area. He even has gotten awards as one

of the top doctors around. But me, I question everything anyway. Yes, he

does have an infusion center, which is where I get my Remicade infusions.

There is also a Quest lab attached right to his office, which you can go to

immediately when he required labs, no waiting required there usually either.

I haven't found anything my rheumy has told me so far that has been

inaccurate, but that doesn't mean I will blindly follow him either. I want

to understand what he is doing, and what the meds are doing to and for me at

all times. That's why I had the question about the discrepancy of RA being a

" rare " disease, and so many people being diagnosed with it.

As for doctors doing things (prescribing meds or infusions, etc.) because

they will make more money; it is a fact that many doctors do what they do in

order to make more money. I don't know that my rheumatologist is doing that,

but it is always a possibility and something that we all should keep in

mind. Bottom line is that I just wish I could be 100% sure that I am doing

the right thing by risking the side effects of the Remicade and

methotrexate. So far, I can only go on the doctors' word for it as I have no

concrete proof that I am being helped by it. The combination of OA and RA in

the same joints makes it almost impossible to tell the difference as far as

pain as a guide. It seems that no amount of meds change the pain level to a

great extent, including the Remicade and methotrexate. But if they are

reducing the amount of damage being done on the inside of the joints, I

guess they are a good thing. Again, I just wish I could be absolutely sure

I am doing the right thing by taking them. I guess I want a foolproof way of

knowing, and there probably isn't one.

Thanks for your input. I appreciate your concern.

[ ] Re: Re: /RA question

Hello ,

I suppose I asked the question because I would never take a drug

just because my rheumy, or any doctor told me to. You must be your own

healthcare advocate. Doctors are not gods. Most of the time, they do what

their specialty group maintains, what the research shows, and what has

worked for other patients. Sometimes, early research hides some side

effects. Sometimes, as with Merck & Vioxx, the drug company hides

information.

I do not know what kind of doctors you are seeing, but I would be

seriously concerned if I believed my rheumy or any doctor would financially

benefit from prescribing a medication -- it is unethical and illegal.

I do not know what kind of infusion you receive but biologic meds are

very expensive to produce. For example, Remicade is only dispensed in 100mg

increments. Each 100mg bottle costs $300-$800 depending on the negotiated

price by the insurance company. Getting an infusion in a center adds to the

price -- you are taking up a chair. I have received Remicade in my rheumy's

office, in the outpatient center at a hospital and at home (depending on the

type of insurance I have had). The cost per treatment at the hospital was

over $4,000. The price at my rheumy's office was just over $3,000. Taking it

at home is by far the cheapest. The total cost is $2000. These prices all

include the cost of the medication.

If the bulk of your pain is from OA, then taking an infusion might be

a waste off time. You should talk to your rheumy about it.

As for you and your husband having similar conditions, sometimes we

seek out people that will understand. A few of my good friends have some

connection with RA but I seek them out through my work with the Foundation.

I put myself in situations that make me less rare.

As for the wait to see a rheumy, rheumys do not just treat RA -- most

of their patients have OA, and that number will just increase the older our

society gets. I understand why some have stopped taking Medicare, but they

could be shooting themselves in the foot. As baby boomers age, and develop

OA, many will only be on Medicare. If they are lucky enough to have private

insurance, it will only be secondary.

As for having a problem changing rheumys, I have an HMO and I have

never had a problem. I have gone through 4 PCPs and 3 rheumys. Each time I

changed rheumys or PCPs I had very good reasons and I wrote letters to my

HMO and to the state Insurance agency. It resulted in 2 of the doctors being

dropped from my plan. If you read your " Evidence of coverage " booklet it

lists your rights as a member of the insurance company. One right is the

right to change doctors if it is in the best interest of your health.

Speak up for yourself. Otherwise, how will your doctor know your

concerns?

Take care,

Steph in VA