Re: Prednisone and Remicade

[Guest guest]

As a 5 year veteran of RA, I have experience with prednisone and

Remicade, as well as several other medications.

It's true that prednisone is a nasty drug, and has bad long term side

effects. However, most of the DMARDs and biologic agents used to

treat RA take some period of time (sometimes up to 3 months) to take

effect. Prednisone can mean the difference between functioning and

not while you wait for the other things to kick in.

As for Remicade, it's true that the docs purchase it from the

manufacturer and they make some money from the infusion. With

managed care, most of them don't get reimbursed for nearly the amount

they charge. However, my experience has been that it's not always the

1st treatment tried, and is used in several situations:

- it's the treatment of choice for patients on medicare because

medicare will pay 80% of the cost, where as it will pay nothing

towards the cost of Humira, Kineret or Enbrel (or any other drug)

- it's the treatment of choice for patients who don't have the finger

dexterity to do a self-injection due to the damage done to their

joints over the years by RA

- it's tried when other things don't work.

Any drug can lose it's effectiveness over time - it depends on each

person's body chemistry. I used Enbrel for 2 years, but it gradually

lost effectiveness and I had to stop. I then switched to Remicade,

which didn't kick in until after the 3rd treatment, and then really

only worked for me for about 6 months before it lost effectiveness

(even with higher doses and more frequent infusions). I'm currently

on Kineret, which so far seems to be helping.

On top of the biologic treatment, I've been on 20 mg of MTX for 4 1/2

years, as well as an anti-inflammatory (and pain meds). I've also

been on prednisone, between 5 and 10 mg for the past 14 months. I've

been trying to taper off, but haven't had a great deal of success.

However, the prednisone has made it possible for me to continue

working (rather than going on disability), support my family, and

(almost most important) keep my health insurance. I hate being on

prednisone, but I hate worse the thought of disability.

I'm not a doctor either, but just wanted to share another point of

view.

Beth

> It seems to me after a few weeks on the group that there are a

great

> many people taking Remicade and also a surprising number of people

> who take prednisone. It could be that this group attracts more

> people with difficult cases who need prednisone, but you should

> realize that this is not the best initial treatment for a fairly

> normal newly diagnosed case of RA. As someone pointed out a few

> weeks ago the side effects of prednisone are horrific, proven and

not

> reversible.

> One theory is that the doctors have a real interest in quick

results

> so they will not lose the patient to another doctor or specialist.

> Prednisone gives you a fairly quick feeling of improvement but it

> can't be sustained without damage.

> One good reason to use prednisone is to make people with very bad

> symptons have some easing of their symptoms while one of the other

> types of drug starts to take effect as nothing alse acts so fast.

> Anyway - watch out for the prednisone

>

> As for the Remicade, according to my friend, the medical market

> research person, the doctors in the US can " warehouse " the drug.

> They get it direct from the pharmaceutical companies and sell it

> direct to the patients so the doctors make the money that a

drugstore

> would make in other systems. That means that each person on

remicade

> is worth $2000 a year to the doctors. Also the administration of

the

> infusion nets them more money than an injectable.

> One drawback to remicade is dosage creep - as your bodyy gets more

> accustomed to it, or if you get heavier you will either need more

of

> it or you will need it more frequently so the cost will go on

> rising. She knows of one heavy person who needs it every 4 weeks

at

> a cost of $68000 per year.

>

> Anyway this is one point of view and I am a patient not a doctor.

> Annette

[Guest guest]

My RD started me with Prednisone so I could get out of bed and also Arava as my first DMARD. He told me to get off Prednisone as soon as I could. After a few months when that didn't work he added Methotrexate and after a few months that didn't work either. He told me of my opitons with the biologics and recommended Remicade because (after two cheaper DMARDs had failed me) Medicare would pay for 80% of it. I had two infusions at 3 mg/kg, three at 5 mg/kg, and the rest at 6 mg/kg. It took about a year on Remicade and a year and an half after diagnosis to get off Prednisone. I would have spent a year and a half in bed if it had not been for Prednisone. I am thankful for Prednsione and also thankful to be off it, but I would resume it immediately if I needed it to be able to function.

While I agree that Prednisone has some bad side effects, I have seen nothing to indicate that they are "horrific, proven and not reversible." On the other hand, I have seen plenty of documentation that untreated RA can have effects that are horrific, proven, and not reversible. Prednisone is not a treatment for RA but a medicine that permits a person to function while other medicines are becoming effective.

I don't know what the alternative is for the person who spends $68,000 a year on Remicade but I think that is better than the horrific, proven, and not reversible effects of untreated RA.

Everyone has to find out how to treat their own disease because no two people are the same. Some get by with a mild DMARD and have no joint damage while others have joint damage and are still looking for an effective DMARD after many have failed them.

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

From: annette2ca

Rheumatoid Arthritis

Sent: Tuesday, October 21, 2003 4:47 PM

Subject: Prednisone and Remicade

It seems to me after a few weeks on the group that there are a great many people taking Remicade and also a surprising number of people who take prednisone. It could be that this group attracts more people with difficult cases who need prednisone, but you should realize that this is not the best initial treatment for a fairly normal newly diagnosed case of RA. As someone pointed out a few weeks ago the side effects of prednisone are horrific, proven and not reversible. One theory is that the doctors have a real interest in quick results so they will not lose the patient to another doctor or specialist. Prednisone gives you a fairly quick feeling of improvement but it can't be sustained without damage. One good reason to use prednisone is to make people with very bad symptons have some easing of their symptoms while one of the other types of drug starts to take effect as nothing alse acts so fast.Anyway - watch out for the prednisoneAs for the Remicade, according to my friend, the medical market research person, the doctors in the US can "warehouse" the drug. They get it direct from the pharmaceutical companies and sell it direct to the patients so the doctors make the money that a drugstore would make in other systems. That means that each person on remicade is worth $2000 a year to the doctors. Also the administration of the infusion nets them more money than an injectable. One drawback to remicade is dosage creep - as your bodyy gets more accustomed to it, or if you get heavier you will either need more of it or you will need it more frequently so the cost will go on rising. She knows of one heavy person who needs it every 4 weeks at a cost of $68000 per year.Anyway this is one point of view and I am a patient not a doctor. Annette

[Guest guest]

AMEN!! I've been on MTX, Plaquinil, and Prednisone since May. I have

gone from oral MTX to injetion and double the dose of Plaquinil.

Every time I try to ween off the Prednisone I get into trouble. When

I go below 15 mg daily the RA wreaks havoc. This past Saturday I went

ffrom 15 mg to 12.5 mg and now I'm suffering. My feet are swelling

and my right knee is filling with synovial fluid. I've had to have it

drained twice already.

Something is going to kill me, RA or Prednisone. I would rather die

with a little quality of life left than not.

God Bless and good luck to all,

Jay

> My RD started me with Prednisone so I could get out of bed and also

Arava as my first DMARD. He told me to get off Prednisone as soon as

I could. After a few months when that didn't work he added

Methotrexate and after a few months that didn't work either. He told

me of my opitons with the biologics and recommended Remicade because

(after two cheaper DMARDs had failed me) Medicare would pay for 80%

of it. I had two infusions at 3 mg/kg, three at 5 mg/kg, and the

rest at 6 mg/kg. It took about a year on Remicade and a year and an

half after diagnosis to get off Prednisone. I would have spent a

year and a half in bed if it had not been for Prednisone. I am

thankful for Prednsione and also thankful to be off it, but I would

resume it immediately if I needed it to be able to function.

>

> While I agree that Prednisone has some bad side effects, I have

seen nothing to indicate that they are " horrific, proven and not

reversible. " On the other hand, I have seen plenty of documentation

that untreated RA can have effects that are horrific, proven, and not

reversible. Prednisone is not a treatment for RA but a medicine that

permits a person to function while other medicines are becoming

effective.

>

> I don't know what the alternative is for the person who spends

$68,000 a year on Remicade but I think that is better than the

horrific, proven, and not reversible effects of untreated RA.

>

> Everyone has to find out how to treat their own disease because no

two people are the same. Some get by with a mild DMARD and have no

joint damage while others have joint damage and are still looking for

an effective DMARD after many have failed them.

> ----- Original Message -----

> From: annette2ca

> Rheumatoid Arthritis

> Sent: Tuesday, October 21, 2003 4:47 PM

> Subject: Prednisone and Remicade

>

>

> It seems to me after a few weeks on the group that there are a

great

> many people taking Remicade and also a surprising number of

people

> who take prednisone. It could be that this group attracts more

> people with difficult cases who need prednisone, but you should

> realize that this is not the best initial treatment for a fairly

> normal newly diagnosed case of RA. As someone pointed out a few

> weeks ago the side effects of prednisone are horrific, proven and

not

> reversible.

> One theory is that the doctors have a real interest in quick

results

> so they will not lose the patient to another doctor or

specialist.

> Prednisone gives you a fairly quick feeling of improvement but it

> can't be sustained without damage.

> One good reason to use prednisone is to make people with very bad

> symptons have some easing of their symptoms while one of the

other

> types of drug starts to take effect as nothing alse acts so fast.

> Anyway - watch out for the prednisone

>

> As for the Remicade, according to my friend, the medical market

> research person, the doctors in the US can " warehouse " the drug.

> They get it direct from the pharmaceutical companies and sell it

> direct to the patients so the doctors make the money that a

drugstore

> would make in other systems. That means that each person on

remicade

> is worth $2000 a year to the doctors. Also the administration of

the

> infusion nets them more money than an injectable.

> One drawback to remicade is dosage creep - as your bodyy gets

more

> accustomed to it, or if you get heavier you will either need more

of

> it or you will need it more frequently so the cost will go on

> rising. She knows of one heavy person who needs it every 4 weeks

at

> a cost of $68000 per year.

>

> Anyway this is one point of view and I am a patient not a doctor.

> Annette

>

>

>

[Guest guest]

Hello all, This is in VA and I would like to add my 2 cents about Remicade & Prednisone. I am approaching my 4 year "anniversary" of being diagnosed with arthritis. Over these 4 years, I have been on every medication available with the exception of Humira, Kineret and a few others. I was put on Prednisone immediately after I was diagnosed. My highest dose was 40 mg/day for a week. My current dose is 3mg/day. I get my bloodwork checked every 3 months & I have not had any side effects, with the exception of weight gain at the high doses (which I have lost as my dosage has lowered).

I agree with Beth that Pred can mean the difference between functioning and not. I'm 26 and was diagnosed when I was 22.

It is true that doctors make some money from Remicade but they have to make some money. I receive my Remicade at the local hospital, which participates in my insurance plan. The hospital bills my insurance about $3000 for my treatment. It receives roughly $2000 for my insurance & $100 from me. For the benefits I receive from Remicade, it is well worth the money.

Regarding Annetta's comments, I respect your opinions, but do not agree with most of them. Pednisone is a common 1st treatment to get symptoms under control. I don't know about your initial symptoms, but mine were mind-numbing. I gladly took the prednisone regardless of side effects because I could not function by the time I was diagnosed. Most of prednisone's side effects (weight gain, higher sugar numbers, etc.) reduce when the dosage is tapered and stopped.

As far as the doctor putting me on prednisone quickly, it was not give me some relief, not because he was worried about losing me to another specialist.

As far as doctors making $2000 a year off of Remicade patients ... at the ideal every-6-week dosage, doctors can make $333 per treatment. Even if the number is true, they still have to pay their nurses, their insurance, the needles, saline, and maintenence on their infusion machines. $333 doesn't stretch that far.

Have a good day.

Steph in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

See when your friends are online with MSN Messenger 6.0. Download it now FREE!