Re: Lack of radiological and clinical benefit over two years of low dose prednisolone for RA

[Guest guest]

all the more reason to get off these terrible drugs.

but i cant seems to get below 5mg p/day without my pain going

through the roof. (even though it is probably placebo!)

Suzie

> Ann Rheum Dis. 2004 Jul;63(7):797-803.

>

> Lack of radiological and clinical benefit over two years of low

dose

> prednisolone for rheumatoid arthritis: results of a randomised

controlled

> trial.

>

> Capell HA, Madhok R, Hunter JA, Porter D, on E, Larkin J,

Thomson EA,

> Hampson R, Poon FW.

>

> Centre for Rheumatic Diseases, Glasgow Royal Infirmary, North

Glasgow

> University NHS Trust, Castle St, Glasgow G40SF, UK.

> .Capell@n...

>

> BACKGROUND: Evidence for disease modifying activity of low dose

> corticosteroid treatment in rheumatoid arthritis is contradictory.

Studies

> showing radiological benefit suggest that continued treatment is

required to

> sustain the effect. OBJECTIVE: To evaluate the effect of low dose

oral

> prednisolone in early rheumatoid arthritis on disease activity

over two

> years. DESIGN: Double blind placebo controlled trial. METHODS:

Patients with

> rheumatoid arthritis, duration <3 years (n = 167), were started on

a disease

> modifying antirheumatic drug (DMARD; sulphasalazine) and allocated

by

> stratified randomisation to prednisolone 7 mg/day or placebo.

Primary

> outcome measure was radiological damage, assessed by the modified

Sharp

> method. Clinical benefit was a secondary outcome. A proactive

approach to

> identifying and treating corticosteroid adverse events was

adopted. Patients

> who discontinued sulphasalazine were offered an alternative DMARD.

RESULTS:

> 90 of 257 patients eligible for the study refused to participate

(more women

> than men). Of those enrolled, 84% were seropositive for rheumatoid

factor,

> median age 56 years, median disease duration 12 months, female to

male ratio

> 1.8:1. Prednisolone was given to 84 patients; of these 73%

continued

> prednisolone and 70% sulphasalazine at 2 years. Of the 83 patients

on

> placebo, 80% continued placebo and 64% sulphasalazine at 2 years.

There were

> no significant differences in radiological score or clinical and

laboratory

> measures at 0 and 2 years.

>

> CONCLUSIONS: Low dose prednisolone conferred no radiological or

clinical

> benefit on patients maintained on a DMARD over two years. Low dose

> corticosteroids have no role in the routine management of

rheumatoid

> arthritis treated with conventional disease modifying drugs.

>

> PMID: 15194574

>

> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?

cmd=Retrieve & db=pubmed & dopt=Abstract & list_uids=15194574 & itool=iconabs

tr

[Guest guest]

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

From: suzie

> all the more reason to get off these terrible drugs.but i cant seems to get below 5mg p/day without my pain going through the roof. (even though it is probably placebo!)I haven't been able to get off prednisone either. I'm like you, every time I get too low of a dose, I have a major flare and I'm back on a high dose.

Nina

[Guest guest]

I'm afraid of not being able to get off of it too. Gradually my rheumatologist has me down to 5 mgs and 7.5 mgs every other day. I see him again on 5/4 and my guess is he'll take me down to 5mgs. I've not been able to get past 3mgs over the last couple of years....but I'm hoping since he has me taking less month by month, I'll be able to get off it.

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

Maggie

http://www.4HockeyFans.com

http://www.4FloridaHockey.com

MSN: Maggies1429

AOL: Maggies85

-----Original Message-----From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ]On Behalf Of Nina Sent: Saturday, April 23, 2005 12:13 PMRheumatoid Arthritis Subject: Re: Re: Lack of radiological and clinical benefit over two years of low dose prednisolone for RA

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

From: suzie

> all the more reason to get off these terrible drugs.but i cant seems to get below 5mg p/day without my pain going through the roof. (even though it is probably placebo!)I haven't been able to get off prednisone either. I'm like you, every time I get too low of a dose, I have a major flare and I'm back on a high dose.

Nina

[Guest guest]

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

From: Maggie

> I'm afraid of not being able to get off of it too. Gradually my rheumatologist has me down to 5 mgs and 7.5 mgs every other day. I see him again on 5/4 and my guess is he'll take me down to 5mgs. I've not been able to get past 3mgs over the last couple of years....but I'm hoping since he has me taking less month by month, I'll be able to get off it.

I've gotten as low as 2.5 mg., but then ended up having to get a Kenalog shot to counteract the huge flare it caused.

Nina

[Guest guest]

I've been on between 15 and 25mg for the past ten years... I have a whole laundry list of the crap it caused. I've had three joint replacements and my surgeon assures me it was more due to erosion caused by prednisone than from joint damaged caused by rheumatoid arthritis. I have DEXA bone scans every few months and I've been told I have the bones of a 75yr old person (sorry, Harold!) I'm taking Fosamax to try to reverse this, but it's not helping enough to counteract the prednisone. At best it's neutralizing any further damage from being caused, not reversing the existing damage.

I started tapering down a few months ago, and I'm now down to 8mg a day... this is the lowest I've ever taken since I began the crap when I was 13. I had been reducing from 20mg at a rate of 1mg a week but when I hit 10mg I started going more slowly at 1mg a month.

I haven't hit a flare yet... I expect it's going to happen soon, but at this point I don't care. The really disturbing part is that I'm not sure I even care about the bone loss and risk of cataracts. My bones are already 75 yrs old. I don't think being 78 or 80 is going to hurt them too badly. It's the fat moonface I want to get rid of... I'm so focused on that to the exclusion of the more dangerous things that I ought to be concerned about. I DON'T CARE anymore. Ever since I was 12 yrs old I've looked like an anorexic freak with ribs jutting out, with the triple chin head of a 500lb woman stuck on top of my scrawny neck. I didn't go to my Prom; not only was I too ashamed to show up with my ugly self in a beautiful dress, but it's not like anyone wanted to go with me anyway. I've never had a REAL (as in not long-distance) relationship that wasn't completely closeted, that I could tell people about or bring my girl home for dinner. I'm going to be 24 in a month and I probably have the social skills of your average 8 yr old. I can't live like this anymore, and I'm never going to get out of this rut with my triple chins.

A couple months ago I bought myself a pair of black leather pants and a clubbing top with sequins that would make my grandmother faint and my father forbid me from leaving the house. I'll wear the outfit when I'm down to one chin, however long it may take. Of course, WHERE I wear it to is still up in the air, since I have no friends.

Yeah. I hate prednisone.

Jenni

[Guest guest]

All the best on your efforts Jenni. You sound like you've got enough

determination to do it. Someone on the list once posted a fairly

complex method of tapering off really slowly. I think when you get

to the last 5 mg you have to be really careful.

In my case I was misdiagnosed and spent a year with pretty unchecked

damage being done to the joints but the rheumy I finally saw only

used pred for the odd injections to the joint.

It sounds like you've got lots of personality. Good luck with those

old bones. They are coming up with more and easier ostoporosis

treatments all the time.

Annette

In Rheumatoid Arthritis , Jenni <chaospearl@o...>

wrote:

> I've been on between 15 and 25mg for the past ten years... I have

a whole laundry list of the crap it caused. I've had three joint

replacements and my surgeon assures me it was more due to erosion

caused by prednisone than from joint damaged caused by rheumatoid

arthritis. I have DEXA bone scans every few months and I've been

told I have the bones of a 75yr old person (sorry, Harold!) I'm

taking Fosamax to try to reverse this, but it's not helping enough to

counteract the prednisone. At best it's neutralizing any further

damage from being caused, not reversing the existing damage.

>

> I started tapering down a few months ago, and I'm now down to 8mg a

day... this is the lowest I've ever taken since I began the crap when

I was 13. I had been reducing from 20mg at a rate of 1mg a week but

when I hit 10mg I started going more slowly at 1mg a month.

>

> I haven't hit a flare yet... I expect it's going to happen soon,

but at this point I don't care. The really disturbing part is that

I'm not sure I even care about the bone loss and risk of cataracts.

My bones are already 75 yrs old. I don't think being 78 or 80 is

going to hurt them too badly. It's the fat moonface I want to get

rid of... I'm so focused on that to the exclusion of the more

dangerous things that I ought to be concerned about. I DON'T CARE

anymore. Ever since I was 12 yrs old I've looked like an anorexic

freak with ribs jutting out, with the triple chin head of a 500lb

woman stuck on top of my scrawny neck. I didn't go to my Prom; not

only was I too ashamed to show up with my ugly self in a beautiful

dress, but it's not like anyone wanted to go with me anyway. I've

never had a REAL (as in not long-distance) relationship that wasn't

completely closeted, that I could tell people about or bring my girl

home for dinner. I'm going to be 24 in a month and I probably have

the social skills of your average 8 yr old. I can't live like this

anymore, and I'm never going to get out of this rut with my triple

chins.

>

> A couple months ago I bought myself a pair of black leather pants

and a clubbing top with sequins that would make my grandmother faint

and my father forbid me from leaving the house. I'll wear the outfit

when I'm down to one chin, however long it may take. Of course,

WHERE I wear it to is still up in the air, since I have no friends.

>

> Yeah. I hate prednisone.

>

> Jenni

[Guest guest]

Oh Jenni my heart really goes out to you. I'm sure you believe that no one could be interested in you because of your moon face but that's not so. There are many men who are interested in an interesting person. You have to look around, there are many people in this world who aren't overly attractive but they find someone. I'll tell you the same thing I tell my son (who had social problems), when you want a social life you will have it, it's in your power. You just have to be willing to take a chance and trust people. And you have to get over the insecurity of the moon face.

I'm much older than you Jenni and I've spoken to many women my age who want their husbands to get hair implants. After we speak they decide it's not necessary. Looks don't pay the bills, keep you warm at night or provide the emotional support we all desire.......Looks are surface only, in fact have you ever noticed when you first look at a person some look beautiful, then you get to know them and suddenly they look ugly to you (if they are ugly inside)? Same is true for people who are less than beautiful, once you see what they are inside you see beauty on the outside.

So, if you desire a social life, just get out there and look for it, you can do it!

Dorey

www.LivingWithRheumatiodArthritis.com

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

From: Jenni

Rheumatoid Arthritis

Sent: Saturday, April 23, 2005 10:34 AM

Subject: Re: Re: Lack of radiological and clinical benefit over two years of low dose prednisolone for RA

I've been on between 15 and 25mg for the past ten years... I have a whole laundry list of the crap it caused. I've had three joint replacements and my surgeon assures me it was more due to erosion caused by prednisone than from joint damaged caused by rheumatoid arthritis. I have DEXA bone scans every few months and I've been told I have the bones of a 75yr old person (sorry, Harold!) I'm taking Fosamax to try to reverse this, but it's not helping enough to counteract the prednisone. At best it's neutralizing any further damage from being caused, not reversing the existing damage.

I started tapering down a few months ago, and I'm now down to 8mg a day... this is the lowest I've ever taken since I began the crap when I was 13. I had been reducing from 20mg at a rate of 1mg a week but when I hit 10mg I started going more slowly at 1mg a month.

I haven't hit a flare yet... I expect it's going to happen soon, but at this point I don't care. The really disturbing part is that I'm not sure I even care about the bone loss and risk of cataracts. My bones are already 75 yrs old. I don't think being 78 or 80 is going to hurt them too badly. It's the fat moonface I want to get rid of... I'm so focused on that to the exclusion of the more dangerous things that I ought to be concerned about. I DON'T CARE anymore. Ever since I was 12 yrs old I've looked like an anorexic freak with ribs jutting out, with the triple chin head of a 500lb woman stuck on top of my scrawny neck. I didn't go to my Prom; not only was I too ashamed to show up with my ugly self in a beautiful dress, but it's not like anyone wanted to go with me anyway. I've never had a REAL (as in not long-distance) relationship that wasn't completely closeted, that I could tell people about or bring my girl home for dinner. I'm going to be 24 in a month and I probably have the social skills of your average 8 yr old. I can't live like this anymore, and I'm never going to get out of this rut with my triple chins.

A couple months ago I bought myself a pair of black leather pants and a clubbing top with sequins that would make my grandmother faint and my father forbid me from leaving the house. I'll wear the outfit when I'm down to one chin, however long it may take. Of course, WHERE I wear it to is still up in the air, since I have no friends.

Yeah. I hate prednisone.

Jenni

[Guest guest]

Hi jenni,

I am so sorry to read of the trouble you have had with this drug. i

know how hard it feels when your self esteem is affected by the side

effects of pred like the moon face. i really feel for you. good on

you for buying that outfit - you will get there!

never, never, never give up!

Suzie

> I've been on between 15 and 25mg for the past ten years... I have

a whole laundry list of the crap it caused. I've had three joint

replacements and my surgeon assures me it was more due to erosion

caused by prednisone than from joint damaged caused by rheumatoid

arthritis. I have DEXA bone scans every few months and I've been

told I have the bones of a 75yr old person (sorry, Harold!) I'm

taking Fosamax to try to reverse this, but it's not helping enough

to counteract the prednisone. At best it's neutralizing any further

damage from being caused, not reversing the existing damage.

>

> I started tapering down a few months ago, and I'm now down to 8mg

a day... this is the lowest I've ever taken since I began the crap

when I was 13. I had been reducing from 20mg at a rate of 1mg a

week but when I hit 10mg I started going more slowly at 1mg a

month.

>

> I haven't hit a flare yet... I expect it's going to happen soon,

but at this point I don't care. The really disturbing part is that

I'm not sure I even care about the bone loss and risk of cataracts.

My bones are already 75 yrs old. I don't think being 78 or 80 is

going to hurt them too badly. It's the fat moonface I want to get

rid of... I'm so focused on that to the exclusion of the more

dangerous things that I ought to be concerned about. I DON'T CARE

anymore. Ever since I was 12 yrs old I've looked like an anorexic

freak with ribs jutting out, with the triple chin head of a 500lb

woman stuck on top of my scrawny neck. I didn't go to my Prom; not

only was I too ashamed to show up with my ugly self in a beautiful

dress, but it's not like anyone wanted to go with me anyway. I've

never had a REAL (as in not long-distance) relationship that wasn't

completely closeted, that I could tell people about or bring my girl

home for dinner. I'm going to be 24 in a month and I probably have

the social skills of your average 8 yr old. I can't live like this

anymore, and I'm never going to get out of this rut with my triple

chins.

>

> A couple months ago I bought myself a pair of black leather pants

and a clubbing top with sequins that would make my grandmother faint

and my father forbid me from leaving the house. I'll wear the

outfit when I'm down to one chin, however long it may take. Of

course, WHERE I wear it to is still up in the air, since I have no

friends.

>

> Yeah. I hate prednisone.

>

> Jenni

[Guest guest]

As you pointed out, I also have the bones of a 75 yr old person but my doctor is trying to change that by putting me on Fosamax. For some time he has had me taking extra calcium and Vitamin D to combat osteopenia (not quite as severe as osteoporosis).

Congratulations on getting so far with your tapering of Prednisone. I couldn't do that until I was taking both Methotrexate and Remicade, and increased the Remicade to 6 mg/kg. Once my RA was pretty well controlled with other medications I was able to get off Prednisone fairly quickly.

I think you're selling yourself too short about the moon face. My guess is that people see that you are not happy with yourself and they think, "She doesn't love herself so there must be something about her that is not lovable." You need to find it within yourself to look past your face to see the real you and fall in love with yourself. Please concentrate on the positives about yourself and that will help immensely to let others also see your positive side. God bless.

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

From: Jenni

Rheumatoid Arthritis

Sent: Saturday, April 23, 2005 10:34 AM

Subject: Re: Re: Lack of radiological and clinical benefit over two years of low dose prednisolone for RA

I've been on between 15 and 25mg for the past ten years... I have a whole laundry list of the crap it caused. I've had three joint replacements and my surgeon assures me it was more due to erosion caused by prednisone than from joint damaged caused by rheumatoid arthritis. I have DEXA bone scans every few months and I've been told I have the bones of a 75yr old person (sorry, Harold!) I'm taking Fosamax to try to reverse this, but it's not helping enough to counteract the prednisone. At best it's neutralizing any further damage from being caused, not reversing the existing damage.

I started tapering down a few months ago, and I'm now down to 8mg a day... this is the lowest I've ever taken since I began the crap when I was 13. I had been reducing from 20mg at a rate of 1mg a week but when I hit 10mg I started going more slowly at 1mg a month.

I haven't hit a flare yet... I expect it's going to happen soon, but at this point I don't care. The really disturbing part is that I'm not sure I even care about the bone loss and risk of cataracts. My bones are already 75 yrs old. I don't think being 78 or 80 is going to hurt them too badly. It's the fat moonface I want to get rid of... I'm so focused on that to the exclusion of the more dangerous things that I ought to be concerned about. I DON'T CARE anymore. Ever since I was 12 yrs old I've looked like an anorexic freak with ribs jutting out, with the triple chin head of a 500lb woman stuck on top of my scrawny neck. I didn't go to my Prom; not only was I too ashamed to show up with my ugly self in a beautiful dress, but it's not like anyone wanted to go with me anyway. I've never had a REAL (as in not long-distance) relationship that wasn't completely closeted, that I could tell people about or bring my girl home for dinner. I'm going to be 24 in a month and I probably have the social skills of your average 8 yr old. I can't live like this anymore, and I'm never going to get out of this rut with my triple chins.

A couple months ago I bought myself a pair of black leather pants and a clubbing top with sequins that would make my grandmother faint and my father forbid me from leaving the house. I'll wear the outfit when I'm down to one chin, however long it may take. Of course, WHERE I wear it to is still up in the air, since I have no friends.

Yeah. I hate prednisone.

Jenni

[Guest guest]

Jenni hi sorry to hear about the predisone problem I have been on

predisone for the last 13years and I know whaat you are going

through I am older than you and I have my husband but I never let

the roundness of my face bother me on my drivers lince it looks like

I wiegh about 200 lbs but I don't and I don't

let it bother me what people thikk it use to but I let it go any

more you cann't let it get you down you have to always look forward

for the next day and the new people you are going to meet maybe

mister right will be in there keep an upper chin and love your self

Sherrie

> I've been on between 15 and 25mg for the past ten years... I have

a whole laundry list of the crap it caused. I've had three joint

replacements and my surgeon assures me it was more due to erosion

caused by prednisone than from joint damaged caused by rheumatoid

arthritis. I have DEXA bone scans every few months and I've been

told I have the bones of a 75yr old person (sorry, Harold!) I'm

taking Fosamax to try to reverse this, but it's not helping enough

to counteract the prednisone. At best it's neutralizing any further

damage from being caused, not reversing the existing damage.

>

> I started tapering down a few months ago, and I'm now down to 8mg

a day... this is the lowest I've ever taken since I began the crap

when I was 13. I had been reducing from 20mg at a rate of 1mg a

week but when I hit 10mg I started going more slowly at 1mg a

month.

>

> I haven't hit a flare yet... I expect it's going to happen soon,

but at this point I don't care. The really disturbing part is that

I'm not sure I even care about the bone loss and risk of cataracts.

My bones are already 75 yrs old. I don't think being 78 or 80 is

going to hurt them too badly. It's the fat moonface I want to get

rid of... I'm so focused on that to the exclusion of the more

dangerous things that I ought to be concerned about. I DON'T CARE

anymore. Ever since I was 12 yrs old I've looked like an anorexic

freak with ribs jutting out, with the triple chin head of a 500lb

woman stuck on top of my scrawny neck. I didn't go to my Prom; not

only was I too ashamed to show up with my ugly self in a beautiful

dress, but it's not like anyone wanted to go with me anyway. I've

never had a REAL (as in not long-distance) relationship that wasn't

completely closeted, that I could tell people about or bring my girl

home for dinner. I'm going to be 24 in a month and I probably have

the social skills of your average 8 yr old. I can't live like this

anymore, and I'm never going to get out of this rut with my triple

chins.

>

> A couple months ago I bought myself a pair of black leather pants

and a clubbing top with sequins that would make my grandmother faint

and my father forbid me from leaving the house. I'll wear the

outfit when I'm down to one chin, however long it may take. Of

course, WHERE I wear it to is still up in the air, since I have no

friends.

>

> Yeah. I hate prednisone.

>

> Jenni