Re: Remicade and Medicare Question

Sent: Friday, July 29, 2005 5:39 PM

Subject: Re: Remicade and Medicare Question

I have a son whose teacher tried to label him ADD........I know my son could be a challenge in class because he enjoyed socializing, but ADD was not the problem, of that I was certain. Certain enough that I spent the money to have my son tested and he tested in the 98th percentile for attention, with the psychologist saying that any teacher who couldn't keep his attention was just not trying things that work for this particular child........So, no I'm not a teacher, just a parent who cares about her child and didn't want him doing the ritalin dance.

Dorey

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

From: Hasenstab

www.LivingWithRheumatoidArthritis.com

Sent: Friday, July 29, 2005 1:47 PM

Subject: Re: Remicade and Medicare Question

If you're talking about Canada, I can't address that because I don't know anything about the Canadian educational system, but I can tell you that NO ONE is getting "renumerated" (sic) for "getting" kids on ritalin here. I only wish you had to deal with a child in hysterics because he can't read and can't pay attention one-on-one long enough to learn the alphabet. I've spent my entire life in special ed and unless you have too, you have no business blasting teachers.

And teachers getting renumerated for getting kids on ridalin...............I won't go there.

Dorey

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

From: Maggie

Sent: Friday, July 29, 2005 12:01 PM

Subject: Re: Remicade and Medicare Question

When my husband went with me for the first time my RA doctor, his first comment was "he has a big head " (size)...I said yea, that's cuz he's very smart! I also feel that they are deserved to make what they do....they fix us (most of the time) and every appt ask the same questions, it must get boring sometimes for them. The nurses in my doc's office seem to know a lot about the disease and are very caring and helpful. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

MSN: Maggies1429

AOL: Maggies85sunshine wrote:

I totally agree with 's emails! I love my rheumy and even though like other specialists, they make the big bucks, they deserve it, after all, they didn't just go to school for all those years for nothing!

July 29, 2005

, it wasn't because of that I say teachers get renumeration, I foolishly believed a lady who was living in the US, now back in Canada and she told me of this, it may not be true, but I saw no reason she would speak of it if it wasn't.

I know only too well that many parents make excuses or want to deny when their children are challenged. I personally wasn't one of those parents, I supported the teacher in her efforts and I actively searched for what the underlying problem was, and found he had dysnomia and was challenged with not having the fine motor skills to print......which would explain why he acted out only when it was time to color or do writing exercises. But we digress off the topic here. I'm not insulting doctors, or any other professional, we need them, the problem lies with the insurance companies and false billing, but I'll never agree that doctors should recieve a kick back for prescribing medications. but so goes our society. Physicians paid for prescribing meds, financial advisors paid in the back end for recommending various mutual funds and on and on.

Dorey

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

From: Hasenstab

Sent: Friday, July 29, 2005 2:47 PM

Subject: Re: Remicade and Medicare Question

And so because of your experience, teachers "get paid" for forcing kids to take ritalin? There's something wrong with that reasoning. Just like there are bad parents, there are bad teachers. Believe me, I can cite many more examples than that of parents who made excuses for everything that happened, refused to allow their children to accept responsibility, and who refused to acknowledge a problem. Unfortunately, I taught high school, and saw the end result of ADD kids who were not diagnosed and/or treated properly. They don't graduate -- they don't succeed in school, on a job, in personal relationships. Extensive long-term research supports that and has been done for the last twenty years. ADD doesn't "go away" -- the result is a higher divorce rate, higher unemployment, lower socio-economic status and self-reported lower self-esteem as compared to a control group of peers.

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

From: Dorey

Sent: Friday, July 29, 2005 5:39 PM

Subject: Re: Remicade and Medicare Question

I have a son whose teacher tried to label him ADD........I know my son could be a challenge in class because he enjoyed socializing, but ADD was not the problem, of that I was certain. Certain enough that I spent the money to have my son tested and he tested in the 98th percentile for attention, with the psychologist saying that any teacher who couldn't keep his attention was just not trying things that work for this particular child........So, no I'm not a teacher, just a parent who cares about her child and didn't want him doing the ritalin dance.

Dorey

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

From: Hasenstab

www.LivingWithRheumatoidArthritis.com

Sent: Friday, July 29, 2005 1:47 PM

Subject: Re: Remicade and Medicare Question

If you're talking about Canada, I can't address that because I don't know anything about the Canadian educational system, but I can tell you that NO ONE is getting "renumerated" (sic) for "getting" kids on ritalin here. I only wish you had to deal with a child in hysterics because he can't read and can't pay attention one-on-one long enough to learn the alphabet. I've spent my entire life in special ed and unless you have too, you have no business blasting teachers.

And teachers getting renumerated for getting kids on ridalin...............I won't go there.

Dorey

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

From: Maggie

Sent: Friday, July 29, 2005 12:01 PM

Subject: Re: Remicade and Medicare Question

When my husband went with me for the first time my RA doctor, his first comment was "he has a big head " (size)...I said yea, that's cuz he's very smart! I also feel that they are deserved to make what they do....they fix us (most of the time) and every appt ask the same questions, it must get boring sometimes for them. The nurses in my doc's office seem to know a lot about the disease and are very caring and helpful. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Maggie

MSN: Maggies1429

AOL: Maggies85sunshine wrote:

I totally agree with 's emails! I love my rheumy and even though like other specialists, they make the big bucks, they deserve it, after all, they didn't just go to school for all those years for nothing!

July 29, 2005

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

From: sunshine

> Understandly - you are not concerned with cost - as you have an excellent co-pay - most of us don't have - I think if you were told your medicine would cost you 500-1000/month - then you might be concerned? That's what some of us have been told at one point or the other with insurance and who we work for - I had to change jobs because I couldn't afford my copayment of 400-600 a month, now it would have been twice that, with my dosage increase, if I hadn't got a new job with better benefits.

Enbrel for me would be $3900 deductible, plus $250 per prescription, plus 25% of the actual cost of the medicine (which full cost is about $6000 a month). And that's on Medicare's special program. So I can't take it.

Remicade is going to be $600 every eight weeks. I may not be able to pull that off.

This does not even count the other meds I take or the meds my husband takes for his high BP and bypass surgery last year. Neither of us has insurance. I only have Medicare. Neither of us can get insurance now. I haven't been able to work for seven years, so I can only add my SS disability check to the pot. And I spend way more than that for meds and doctors and hospitals.

For those who have insurance or have tons of $, get on your knees every night and thank God for it. You're very lucky indeed. And whatever you do, do NOT lose your insurance. You probably will never get it again since you have a chronic condition that is expensive.

It's people who don't have insurance that foot the bill for those who do. People who don't have insurance pay full price for everything. The insurance companies get a reduced rate.

When people say their Enbrel or Remicade or Humira or whatever costs them X amount of money per month and they are upset about it, I just have to sigh and think how lucky you are that's all it costs you.

Nina

July 29, 2005

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

From: Dorey

> I have a son whose teacher tried to label him ADD........

Please, let's not go there. This group is for RA, not ADD.

Nina

July 29, 2005

For those who have insurance or have tons of $, get on your knees every night and thank God for it. You're very lucky indeed. And whatever you do, do NOT lose your insurance. You probably will never get it again since you have a chronic condition that is expensive.

It's people who don't have insurance that foot the bill for those who do. People who don't have insurance pay full price for everything. The insurance companies get a reduced rate.

Nina: I do thank God every day for my job and my insurance. Like I said, I didn't use to have such a great plan, so I do know the financial impact this disease can create as well as the pain if you don't get the proper meds which are so expensive. You are right about the above - I hope and pray I will be able to work and keep my good insurance - and am worrying about what will happen when I do retire as I know now Medicare isn't going to pay for what I'm on now and getting supplemental insurance with my health problems is most likely out of the question - they will deny me - you are right - because we are high risk - and if they did offer me one - it would most likely be so expensive I could never afford it.

Insurance coverage can change every year depending on what your employer pays for - so no one can really predict what medical care will cost them tomorrow. I can only thank God I'm able to afford it today.

But the second paragraph somewhat puzzles me - I could not get assistance from the drug mfg. or anywhere when I had insurance - they told me they can only help those who are unemployed or without insurance. That sort of told me that you are better to be broke than save your money for retirement. I feel at this point - I'll be working for the rest of my life in pain or not - or I'll lose everything I've worked for for 25 years. I don't think the fact that I work full-time and have insurance, that those that are not insured, are paying for me. I'm working and working in pain most every day - I just deal with it - as it isn't as bad as it used to be with the meds I'm on now. I pay my taxes which in turn pays for people who are on disability - but I'm glad to help those in need - as I know too well I may be there myself someday.

I understand if someone doesn't have insurance, they have to pay these exhorbitant prices, but I doubt anyone without insurance could even afford these higher class meds.

Check out PSI, Inc. - for assistance - and see if you would qualify - they help with copays and/or premiums for R.A. patients - 800-366-7741

Good luck! I hope you get on Remicade as I think you will be very pleased - I wish I was Bill Gates - I would give you all money to get well!

Nina <ncampbell@...> wrote:

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

From: sunshine

> Understandly - you are not concerned with cost - as you have an excellent co-pay - most of us don't have - I think if you were told your medicine would cost you 500-1000/month - then you might be concerned? That's what some of us have been told at one point or the other with insurance and who we work for - I had to change jobs because I couldn't afford my copayment of 400-600 a month, now it would have been twice that, with my dosage increase, if I hadn't got a new job with better benefits.

Enbrel for me would be $3900 deductible, plus $250 per prescription, plus 25% of the actual cost of the medicine (which full cost is about $6000 a month). And that's on Medicare's special program. So I can't take it.

Remicade is going to be $600 every eight weeks. I may not be able to pull that off.

This does not even count the other meds I take or the meds my husband takes for his high BP and bypass surgery last year. Neither of us has insurance. I only have Medicare. Neither of us can get insurance now. I haven't been able to work for seven years, so I can only add my SS disability check to the pot. And I spend way more than that for meds and doctors and hospitals.

For those who have insurance or have tons of $, get on your knees every night and thank God for it. You're very lucky indeed. And whatever you do, do NOT lose your insurance. You probably will never get it again since you have a chronic condition that is expensive.

It's people who don't have insurance that foot the bill for those who do. People who don't have insurance pay full price for everything. The insurance companies get a reduced rate.

When people say their Enbrel or Remicade or Humira or whatever costs them X amount of money per month and they are upset about it, I just have to sigh and think how lucky you are that's all it costs you.

Nina

Start your day with - make it your home page

July 29, 2005

I liked this board a lot better when it was for support instead of for attack.

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

From: Dorey

Sent: Friday, July 29, 2005 1:07 PM

Subject: Re: Remicade and Medicare Question

I will drop this, you aren't seeing the point. It's criminal doctors being paid to give prescriptions, in my opinion. Look how our society is so over medicated.

Dorey

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

From: sunshine

Sent: Friday, July 29, 2005 11:54 AM

Subject: Re: Remicade and Medicare Question

I totally agree with 's emails! I love my rheumy and even though like other specialists, they make the big bucks, they deserve it, after all, they didn't just go to school for all those years for nothing!

As my doctor said, they have to pay their nurses to administer the infusions, overhead, to make ends meet too. They aren't giving these meds just to make money - I don't believe that at all! And I know they are getting cuts thru insurance and Medicare etc. as well - that is pinching their revenue as well.

Hasenstab <saludo@...> wrote:

Duh. Because he isn't a doctor ONLY for the money. If you honestly believe that, then RA is only a secondary problem.

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

From: Dorey

Sent: Friday, July 29, 2005 2:28 PM

Subject: Re: Remicade and Medicare Question

I reread this, obviously you have one infusion with 8 vials of medication so your doctors cost is $4,000. and he bills out at $5,000. Still why would he want you better?

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

From: slidin2astop@...

Sent: Friday, July 29, 2005 10:12 AM

Subject: Re: Remicade and Medicare Question

Pretty much it does. I use 5 vials every 8 weeks and the nurse there said that each vial cost the docs office $500. In return for my infusion and medicine my insurance is charged $5000 for every infusion. Luckily my co-pay is on $20 for a specialist.

But after a year of seeing the RA doc and having the infusions our insurance upped our rates by 28% instead of the normal 10% every year. And they said it was due to one person on the plan having high medical bills.

Good Luck

__________________________________________________

July 30, 2005

Oh I thank God every day for having

insurance. We didn't have insurance a few years ago and we had to pay

everything up front, Doctors visits, prescriptions etc...it was really

hard. Even when I was diagnosed and we had insurance, we had to pay a

deductible..and my bloodwork alone was $500. I had to quit my job due

to RA and we were set back financially big time. I feel for those who don't have insurance.

Now my husband owns his own company with a few employees so we can get

group insurance.

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

Maggie

MSN: Maggies1429

AOL: Maggies85

Nina wrote:

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

From:

sunshine

For those who have insurance or have

tons of $, get on your knees every night and thank God for it. You're

very lucky indeed. And whatever you do, do NOT lose your

insurance. You probably will never get it again since

you have a chronic condition that is expensive.

July 30, 2005

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

From: " Maggie " <meshouse@...>

> Oh I thank God every day for having insurance. We didn't have insurance a

few years ago and we had to pay everything up front, Doctors visits,

prescriptions etc...it was really hard. Even when I was diagnosed and we had

insurance, we had to pay a deductible..and my bloodwork alone was $500. I

had to quit my job due to RA and we were set back financially big time. I

feel for those who don't have insurance. Now my husband owns his own

company with a few employees so we can get group insurance.

There's something seriously wrong with the healthcare system in this

country, but I don't see it changing in my lifetime so I just try to go with

the flow! Not much I can do about it. I might be able to get insurance

through group insurance, but there's a two year pre-existing condition on

them and to pay $500 or more a month just for me for two years when it won't

pay for anything they could possibly blame on my illnesses is pretty much

out of the question.

Nina

July 30, 2005

My fault Harold, and I appologize to everyone. I spoke out of line, because I didn't make clear what I meant.

Dorey

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

From: Harold Van Tuyl

Sent: Friday, July 29, 2005 3:43 PM

Subject: Re: Remicade and Medicare Question

I liked this board a lot better when it was for support instead of for attack.

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

From: Dorey

Sent: Friday, July 29, 2005 1:07 PM

Subject: Re: Remicade and Medicare Question

I will drop this, you aren't seeing the point. It's criminal doctors being paid to give prescriptions, in my opinion. Look how our society is so over medicated.

Dorey

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

From: sunshine

Sent: Friday, July 29, 2005 11:54 AM

Subject: Re: Remicade and Medicare Question

I totally agree with 's emails! I love my rheumy and even though like other specialists, they make the big bucks, they deserve it, after all, they didn't just go to school for all those years for nothing!

As my doctor said, they have to pay their nurses to administer the infusions, overhead, to make ends meet too. They aren't giving these meds just to make money - I don't believe that at all! And I know they are getting cuts thru insurance and Medicare etc. as well - that is pinching their revenue as well.

Hasenstab <saludo@...> wrote:

Duh. Because he isn't a doctor ONLY for the money. If you honestly believe that, then RA is only a secondary problem.

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

From: Dorey

Sent: Friday, July 29, 2005 2:28 PM

Subject: Re: Remicade and Medicare Question

I reread this, obviously you have one infusion with 8 vials of medication so your doctors cost is $4,000. and he bills out at $5,000. Still why would he want you better?

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

From: slidin2astop@...

Sent: Friday, July 29, 2005 10:12 AM

Subject: Re: Remicade and Medicare Question

Pretty much it does. I use 5 vials every 8 weeks and the nurse there said that each vial cost the docs office $500. In return for my infusion and medicine my insurance is charged $5000 for every infusion. Luckily my co-pay is on $20 for a specialist.

But after a year of seeing the RA doc and having the infusions our insurance upped our rates by 28% instead of the normal 10% every year. And they said it was due to one person on the plan having high medical bills.

Good Luck

__________________________________________________

July 30, 2005

I don't know if it's different from state

to state or what, but we were able to get insurance with two

pre-exisiting diseases. My husband has PKD (poly-cystic kidney

diesease) and I have RA. He owns a small business and since we are

insured with the group, we're told pre-exisiting shouldn't be denied.

The rates did go up this year from last as my husband fell out of a

tree 15 ft to the ground preparing for a hurricane, his business

partner had shoulder surgery and I had a surgery as well.

I agree that there is something wrong with the systems. For many years

we never had to go to the doctor...I mean we went literally years

without seeing a doctor besides my routine lady tests and we still had

to pay every month for insurance...then came the time when we needed

it...so while I feel for others who don't or can't get insurance, I

feel like for many years we paid and didn't use it. Kinda like

homeowners insurance.

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

Maggie

MSN: Maggies1429

AOL: Maggies85

Nina wrote:

There's something seriously wrong with the healthcare system in this

country, but I don't see it changing in my lifetime so I just try to go with

the flow! Not much I can do about it. I might be able to get insurance

through group insurance, but there's a two year pre-existing condition on

them and to pay $500 or more a month just for me for two years when it won't

pay for anything they could possibly blame on my illnesses is pretty much

out of the question.

Nina

July 30, 2005

susan ,nina all ,

are life is all that effects us ours kids , theres lifes all why dont every one put aside their differances and use the delete button for what its ment for ! i for one dont mind a bit hearing about it ! one has to realise how all effects our pain and act like an adult !!!!!!

johnNina <ncampbell@...> wrote:

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

From: Dorey

> I have a son whose teacher tried to label him ADD........

Please, let's not go there. This group is for RA, not ADD.

Nina

Start your day with - make it your home page

July 30, 2005

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

From: " john no_way " <kentuckycowboy1@...>

> susan ,nina all ,

are life is all that effects us ours kids , theres lifes all why dont

every one put aside their differances and use the delete button for what its

ment for ! i for one dont mind a bit hearing about it ! one has to

realise how all effects our pain and act like an adult !!!!!!

If the moderator wants to add ADD to the name of the list, then that's fine.

But if it's going to become an issue here, I'll leave. I'm here for RA

support, not arguments about ADD. You may have the time and energy for it,

but I don't. There are lists out there for ADD and personally I think

that's where the discussion should be held. And I am offended that you

would insinutate that I am not an adult because I don't want to listen to

off topic arguements.

, if you want to hear about it from , why don't you all take it off

list?

Nina

July 30, 2005

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

From: " Harold Van Tuyl " <hvantuyl@...>

> I was just looking at my statement for 7 vials and the doctor's bill was

$8,820. Medicare allowed only $3,976 as a covered expense and they paid

$3,181 (80% of the allowed amount). My doctor reduced his bill to the

amount allowed by Medicare so that leaves $795 for my secondary insurance or

me. Since most of the cost is for Remicade I think you would pay about 5/7

of the amount I pay, or $568. I hope this helps. God bless.

Thanks! I'm hoping if I can start Remicade, I can get off this horrible

prednisone.

Nina

July 30, 2005

When I started Remicade I was on 20 mg Methotrexate and 20 mg Prednisone. The first few infusions at 3 mg/kg (4 vials for me) didn't do much but as we gradually increased to my current 7 vials I was able to get completely off Prednisone and even cut my Methotrexate to 15 mg. I hope your success is at least equal to mine. God bless.

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

From: Nina

Sent: Friday, July 29, 2005 8:38 PM

Subject: Re: Remicade and Medicare Question

Thanks! I'm hoping if I can start Remicade, I can get off this horribleprednisone.Nina

July 30, 2005

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

From: " Harold Van Tuyl " <hvantuyl@...>

> When I started Remicade I was on 20 mg Methotrexate and 20 mg Prednisone.

The first few infusions at 3 mg/kg (4 vials for me) didn't do much but as we

gradually increased to my current 7 vials I was able to get completely off

Prednisone and even cut my Methotrexate to 15 mg. I hope your success is at

least equal to mine. God bless.

I didn't have any luck trying to cut down by 2 1/2 mgs. a week so when I see

the PCP this week I'm going to ask for some 1 mg. prednisone tablets so I

can try cutting down by 1 mg. a week.

Nina

July 30, 2005

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

From: " Maggie " <meshouse@...>

> I don't know if it's different from state to state or what, but we were

able to get insurance with two pre-exisiting diseases. My husband has PKD

(poly-cystic kidney diesease) and I have RA. He owns a small business and

since we are insured with the group, we're told pre-exisiting shouldn't be

denied. The rates did go up this year from last as my husband fell out of

a tree 15 ft to the ground preparing for a hurricane, his business partner

had shoulder surgery and I had a surgery as well.

I'm sure I could get it through a group plan, but since it won't pay

anything toward the pre-existing conditions (this is in TX) for two years,

that's a lot of money out the door. There isn't much that could go wrong

that they couldn't blame on one of my diseases or meds.

Nina

July 30, 2005

Since Jan I've been going down 2 1/2 mgs a

month except for the last month. It's been a slow process...for one

month I'd rotate 7.5 mgs with 5 mgs every other day. Now I'm stuck at

5. I guess after I get on the Humira we'll see what happens, but I know

that my new RA doctor does not approve of prednisone..for the other

doctors it was a quick fix =-O

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

Maggie

MSN: Maggies1429

AOL: Maggies85

Nina wrote:

I didn't have any luck trying to cut down by 2 1/2 mgs. a week so when I see

the PCP this week I'm going to ask for some 1 mg. prednisone tablets so I

can try cutting down by 1 mg. a week.

Nina

July 31, 2005

I think getting off Prednisone is not a question of "toughing it out" although that is usually part of the process. If your RA is severe enough and not well enough controlled in some other way I think you can't get off Prednisone without serious threat to your health. I started out at 40 mg Prednisone and went down to 20 mg by dropping 5 mg at a time. Then I tried 2.5 mg at a time till I got down to 7.5 mg. I then got some 1 mg pills to go along with my 5 mg pills and tried 7 mg instead of 7.5 mg and soon was back up to 7.5 mg. My system was just not ready for the next decrease. After many of my infusions I could drop 5 mg or so in a week or less and fairly soon was able to get off Prednisone a week or so after an infusion. Then a couple of weeks before an infusion I needed to go back on Prednisone and even half a mg made a difference. I could have gone down faster some of the time by "toughing it out" but I don't take very kindly to suffering.

Anyway my general conclusion is that if you are being well enough controlled in other ways you can probably drop 2.5 mg at a time all the way down to zero. However, until you are well enough controlled in other ways it is extremely difficult to drop even by half a mg. Only your body can tell you how fast you can reduce and when you are ready to try another reduction. I'm sorry I can't give you any definitive answer. God bless.

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

From: Sam Rocci

Sent: Saturday, July 30, 2005 2:56 PM

Subject: Re: Remicade and Medicare Question

Hi Harold...

I would like some of your wonderful advice on tapering down the prednisone. I have gone from 15 down to 5, over a two month period, 1 mg at a time... and I hurt! I am on Humira, just did my first injection last week so I am not yet feeling the benefits. I take 25 mg of Methotrexate once a week. As far as the prednisone goes, my doc have given me a prescription for the 1 mg tablets plus the 5 mg ones, and left it up to me as far as how I feel. In your experience is going up 1 mg very beneficial? I am really trying to "tough it out" and stay at 5 mg (have been on it over 18 months and am feeling the weight gain, face bloating effects)... however with three little ones to care for and a week long camping trip looming ahead for the next week I am getting a little frustrated. I am taking Vicoprofen as needed for pain but it's not a great alternative. I am considering at least trying 6 mg and see if that helps.

Thanks for your advice!!

Sam

Visit your group "Rheumatoid Arthritis" on the web.

July 31, 2005

My experience has been that when I was on Remicade - it took a good 3 months to get controlled on that meds - and see the benefits - I had to take prednisone off and on - but since I'm diabetic - am way better off without it - so I was one that would take it only on flare-ups - as my doc said if you are not on it for long term - you can stop it - but I have to say - my moods were effected the last time I stopped -but most likely because I had taken it for about 2 weeks - that time. I would take 10mg to get rid of the pain, but would quickly move to 5 mg. then down to 4 mg, 3 mg. 2, and nothing. Or I'd just take it for a few days to get relief from a bad flare and then stop. I've been told by numerous doctors and others to not just stop it though so please check with your doc about that. My doctor told me it was fine to stop if only for a short term. I did feel like wonder women on it - but hate the drug personally - as it

does have bad side effects - and I don't like the moods it can put you in. I'm now stable on Humira and Imuran, and haven't had to take any pain meds, or prednisone in 2 months!

Just wish it would stay this way - long term!

Harold Van Tuyl <hvantuyl@...> wrote:

I think getting off Prednisone is not a question of "toughing it out" although that is usually part of the process. If your RA is severe enough and not well enough controlled in some other way I think you can't get off Prednisone without serious threat to your health. I started out at 40 mg Prednisone and went down to 20 mg by dropping 5 mg at a time. Then I tried 2.5 mg at a time till I got down to 7.5 mg. I then got some 1 mg pills to go along with my 5 mg pills and tried 7 mg instead of 7.5 mg and soon was back up to 7.5 mg. My system was just not ready for the next decrease. After many of my infusions I could drop 5 mg or so in a week or less and fairly soon was able to get off Prednisone a week or so after an infusion. Then a couple of weeks before an infusion I needed to go back on Prednisone and even half a mg made a difference. I could have gone down faster some of the time by "toughing it out" but I don't take very

kindly to suffering.

Anyway my general conclusion is that if you are being well enough controlled in other ways you can probably drop 2.5 mg at a time all the way down to zero. However, until you are well enough controlled in other ways it is extremely difficult to drop even by half a mg. Only your body can tell you how fast you can reduce and when you are ready to try another reduction. I'm sorry I can't give you any definitive answer. God bless.

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

From: Sam Rocci