Re: Re: Cortisone for AS or RA ??

[Guest guest]

Your lucky jean that the cortizone was short term and that you feel you have

reaped a benefit of it........

Unfortunately your experience does not speak of the over use and abuse of

this drug.

You should be counted as a fortunate one, for there are many in this group

that struggle with getting off of this drug and its complications

Pierre is quite right about its in effectiveness in the spondyloarthropathies

.... I being one diagnosed with that and having one experience with cortizone

that sent me through the roof and worsened my condition

I am thankful to my doctor for his strong beliefs on the problems this drug

causes and its ineffectiveness in my disease. I am a female and am diagnosed

with PA. I was first diagnosed with AS....

I feel I am better shape without cortizone and I did do worse the one time I

used it

June

[Guest guest]

on 10/8/00 6:07 AM, PSY333CHE@... at PSY333CHE@... wrote:

> Your lucky jean that the cortizone was short term and that you feel you have

> reaped a benefit of it........

> Unfortunately your experience does not speak of the over use and abuse of

> this drug.

> You should be counted as a fortunate one, for there are many in this group

> that struggle with getting off of this drug and its complications

> Pierre is quite right about its in effectiveness in the spondyloarthropathies

> ... I being one diagnosed with that and having one experience with cortizone

> that sent me through the roof and worsened my condition

> I am thankful to my doctor for his strong beliefs on the problems this drug

> causes and its ineffectiveness in my disease. I am a female and am diagnosed

> with PA. I was first diagnosed with AS....

> I feel I am better shape without cortizone and I did do worse the one time I

> used it

> June

Hi June,

Once again, I think we need to be careful about generalizing one person's

experience to all with a similar diagnosis. I looked up the use of cortisone

in PA, and read that it is particularly inappropriate on an on-going basis

for PA because of the skin involvement of psoriasis. It seems that the use

of oral cortisone can exacerbate skin disease by requiring increasing

amounts to control skin inflammation. Sounds like this is a potential

vicious cycle which it is very important for a psoriasis patient to steer

clear of.

I don't think on-going steroid use would be appropriate for me either. ( I

would not even consider it.) The really interesting thing for me has been to

see how much more effective short-term cortisone is AFTER I started the AP.

I think in my case, it may be somewhat as Dr. Brown described: controlling

the inflammation to a certain degree seems to make the minocycline more

effective. For reasons which are unclear to me, I do not respond to ANY of

the NSAIDs, so when things do get out of control, this is my only option.

I would never use cortisone for any but a limited purpose, and would

definitely not use it if I were not addressing the big picture with the AP.

Last fall, when I had been on the AP about 4 months, I was particularly

disappointed to have to have cortisone injections for shoulder bursitis. One

of Dr. Franco's patients with ReA very kindly reassured me, saying he had

just done the same for her. I felt less defeated morally, and soon felt much

better physically, too. I have continued to improve with minocycline since

then.

Jean

[Guest guest]

My psoriasis diagnosis comes only from a small patch in my scalp... thats it

All my other symptoms are that of AS

My doctor told me that I was not to have steroids because of that either AS

or PA....

I will again say that they are just starting to see the damage cortisone does

long term and short term and it is not being used as widely as it has in the

past because of that....

I think that many trusting patients have been unneedingly hooked on steroids

for a moments comfort not knowing how equally damaging cortisone

can be .....

I have heard time and time again in this reading group someone talking about

how well they are doing and then mention the amount of cortisone they are

taking and it scares me because it isnt easy to come off of and it really can

cause worse problems that I do not have the time to go into at present.

I will again say you are fortunate and that it is important that everyone be

careful with this drug no matter what there diagnosis is....

June

[Guest guest]

I agree, also. I could elaborate for hours, but would just caution anyone.

In the original " The Road Back " , Dr. Brown talked about this. He only gave

it in small doses and for short periods of time. He didn't plan on you

staying on it for the rest of your life.

Carol

[Guest guest]

on 10/8/00 6:03 PM, psy333che@... at psy333che@... wrote:

> I will again say you are fortunate and that it is important that everyone be

> careful with this drug no matter what there diagnosis is....

> June

I agree.

Jean

[Guest guest]

In a message dated 10/08/2000 7:04:59 PM Eastern Daylight Time,

psy333che@... writes:

<<

My psoriasis diagnosis comes only from a small patch in my scalp... thats it

All my other symptoms are that of AS

My doctor told me that I was not to have steroids because of that either AS

or PA....

I will again say that they are just starting to see the damage cortisone

does

long term and short term and it is not being used as widely as it has in the

past because of that....

I think that many trusting patients have been unneedingly hooked on steroids

for a moments comfort not knowing how equally damaging cortisone

can be ..... >>

June,

When I used to see my old RD and he wasn't sure if I had RA or PA, he used to

give me a cortizone shot, and I never felt any different at all. I have the

patches of flakey skin on my scalp and behind the ears but not itchy. I

always thought psoraisis was itchy because my mom had it on her legs and was

always scratching it.

Bev

[Guest guest]

Hi everyone,

I have been on prednisone for 10 years and have many related problems.

Again, it can be a life saver when taken properly and not long term,

depending on the illness.

A few weeks ago, while at my rheumatologist, he told my husband and I that

they are seeing heart attacks and strokes in Lupus patients who have been on

prednisone. The bad thing is that he said they are seeing this in women who

are only in their 20's and 30's. I am sure that these are high doses and

long term use. I have been on long term, high doses and plan on getting a

new test for heart disease that is non invasive. It is suppose to detect

coronary artery disease.

This is why the antibiotic therapy is even more important.

Carol

[Guest guest]

Carol, if you remember the name of the test, please let us know. Heart

disease runs in one side of my family, and I think I should be screened for

early signs. I plan to ask my doc about this soon, and the name of the test

would help.

I've had shortness of breath in the past, not too much trouble with it

lately since starting the AP. I wrote it off to recurring respiratory

problems, but one thing it can also be a sign of cardiac problems. Since

I'm on hormones, I think I should bug the doc to check out my status. One

more thing to bug him about, he's probably going to think I'm hypo, LOL, but

I don't care. I'm never going back to the past when I used to let doctors

put off my concerns. Remember not long ago that article that said RA

patients tend to have their other health concerns neglected to some degree

because the focus was always on the RA? I've never even had a cholesterol

test done.

Good luck, and let us know how the test is and how the results turn out.

Liz G

[Guest guest]

Liz,

I will look for the prescription that my doctor wrote out for it. It is to

be done at a UCLA facilitiy in Torrance, Ca. They were suppose to call me to

schedule and I haven't heard from them so I need to find the papers and call

them.

My doctor said that if they find blocked arteries on the first part of the

test (which I think is some kind of a scan, but not sure) then they put a

tube or catheter in the arm and look further. He said it is $400 - $500 and

insurance doesn't pay unless they find something. Then it will pay.

There is another test he told me about that is non invasive, but it only

checks for calcification. He said there could still be the possibility of a

blocked artery even if you don't show calcification, but usually

calcification is present if that is the case. The advantage of this test is

that it also scans most all of your organs and can pick up other problems. I

believe it costs the same as the above and I'm not sure about insurance, but

I don't think it pays for this either. Apparently, both tests are fairly

new. My alternative doctor told me about them.

I have had really bad shortness of breath, also. Doctor Franco's xrays

showed that I had scarring of my lungs, so maybe that is the cause.

I'll let you know about the tests.

Carol

[Guest guest]

DearLiz.

It is called a heart scan but this non invasive procedure is not very good

it only detects calcium deposits in the coronary arteris which does not

fully

correlate with narrowing of arteries i.e.you may have calcium with no

blockage but have narrowing/blockage but no calcium.

It is at best a screening test.

hope this helps.

sonny

Re: rheumatic Re: Cortisone for AS or RA ??

> Carol, if you remember the name of the test, please let us know. Heart

> disease runs in one side of my family, and I think I should be screened

for

> early signs. I plan to ask my doc about this soon, and the name of the

test

> would help.

> I've had shortness of breath in the past, not too much trouble with it

> lately since starting the AP. I wrote it off to recurring respiratory

> problems, but one thing it can also be a sign of cardiac problems. Since

> I'm on hormones, I think I should bug the doc to check out my status.

One

> more thing to bug him about, he's probably going to think I'm hypo, LOL,

but

> I don't care. I'm never going back to the past when I used to let doctors

> put off my concerns. Remember not long ago that article that said RA

> patients tend to have their other health concerns neglected to some degree

> because the focus was always on the RA? I've never even had a cholesterol

> test done.

> Good luck, and let us know how the test is and how the results turn

out.

> Liz G

>

>

>

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