Florinef

[Guest guest]

Hi Gang!

Here is what I have found regarding Florinef and bone density. This seems

to be a consensus of what the researchers and treating physicians have

found to be true in it's use.

Florinef was introduced into medical practice in the 1950's and wasinitially used in very high doses (the equivalent of 20 or more pills aday). In those high doses, glucocorticoid (prednisone -like) side effects(moon face, obesity, and theoretically calcium loss) were noted and thatentered the old medical literature, and some of that is still in sometextbooks. Dr. H. P. Streeten, who extensively used this drug, foundthat he did not encounter these glucocorticoid-like side effects at the lowdoses of Florinef that are now prescribed. In particular, at doses of 4pills a day (0.1mg X 4) or less, this was not seen. But patients withsevere autonomic failure can get osteoporosis, but the reason for it isusually lack of exercise because the low blood pressure decreases theirtime in the upright posture and that itself promotes osteoporosis. Theconcern about Florinef nowadays relates more to vascular changes, and thatis something physicians are watching carefully nowadays.

Merry Christmas Everyone and thanks for supporting your Support Group!

Don SummersPresidentThe SDS/MSA Support Group

The Shy-Drager Syndrome/Multiple System Atrophy Support Group is a full non-profit organization approved by the Internall Revenue Service.Donations fund the entire operation of the Group. Services include: a toll-free number to call for information and physician referral, the maintenance of our website, the e-mail list through Vanderbilt University

and an annual patient/caregiver/family member meeting with prominent physicians.Please visit our website at www.shy-drager.com I can be reached at our toll-free number, Contributions of any amount may be mailed to:The SDS/MSA Support Group2004 LaneAustin, Texas 78728

[Guest guest]

Don,

Thanks for doing some research on this. What I find interesting is

that Rob is on a dose of 3 X 0.1mg tablets a day and DOES get a fair

amount of exercise. Maybe this was happening to him before the

florinef, but he never had a bone density study before this so I

don't know.

My message to the group is that people who are taking florinef on a

long term basis should be checked for osteoporosis. It can be

treated and treating it might prevent some broken bones in folks that

can ill afford to be laid up and lose ground.

Happy holidays to you and Sylvia and the rest of your famlies!

Carol & Rob

> Hi Gang!

> Here is what I have found regarding Florinef and bone density.

This seems

> to be a consensus of what the researchers and treating physicians

have

> found to be true in it's use.

> Florinef was introduced into medical practice in the 1950's and was

> initially used in very high doses (the equivalent of 20 or more

pills a

> day). In those high doses, glucocorticoid (prednisone -like) side

effects

> (moon face, obesity, and theoretically calcium loss) were noted and

that

> entered the old medical literature, and some of that is still in

some

> textbooks. Dr. H. P. Streeten, who extensively used this

drug, found

> that he did not encounter these glucocorticoid-like side effects at

the low

> doses of Florinef that are now prescribed. In particular, at doses

of 4

> pills a day (0.1mg X 4) or less, this was not seen. But patients

with

> severe autonomic failure can get osteoporosis, but the reason for

it is

> usually lack of exercise because the low blood pressure decreases

their

> time in the upright posture and that itself promotes osteoporosis.

The

> concern about Florinef nowadays relates more to vascular changes,

and that

> is something physicians are watching carefully nowadays.

> Merry Christmas Everyone and thanks for supporting your Support

Group!

> Don Summers

> President

> The SDS/MSA Support Group

>

> The Shy-Drager Syndrome/Multiple System Atrophy Support Group

> is a full non-profit organization approved by the Internall Revenue

Service.

> Donations fund the entire operation of the Group. Services

include:

> a toll-free number to call for information and physician referral,

> the maintenance of our website, the e-mail list through Vanderbilt

University

> and an annual patient/caregiver/family member meeting with

prominent physicians.

> Please visit our website at www.shy-drager.com

> I can be reached at our toll-free number,

> Contributions of any amount may be mailed to:

> The SDS/MSA Support Group

> 2004 Lane

> Austin, Texas 78728

[Guest guest]

YO Troops. Florinef - ok, I know lots about what it does, still don't know WHY it was given Jan as PD?PD+ ?? SDS. Dementia! hip replacement rehab patient.

WHY Florinef for you?

LA Louise where the rain it raineth every other grey day nowand will freeze no doubt (like last year) for Christmas.

[Guest guest]

Louise,

Florinef is generally prescribed to raise blood pressure, so it was

probably given to Jan because he had orthostatic hypotension. Did he

have blood pressure drops upon standing? Fainting? I realize he no

longer is able to sit up, so I would be surprised if he were still

being given florinef, or at least very much florinef.

Carol & Rob

> YO Troops. Florinef - ok, I know lots about what it does,

still don't know WHY it was given Jan as PD?PD+ ?? SDS. Dementia!

hip replacement rehab patient.

>

> WHY Florinef for you?

>

> LA Louise where the rain it raineth every other grey day nowand

will freeze no doubt (like last year) for Christmas.

[Guest guest]

Carol and Rob, Yes, OH, fainting /falling alla time and too proud ,

confused, stoic or medicated then to ask even for water so took his pills

completely dry. Doctors were so unavailable that son had to corral neuro at

midnight. So many doctors were involved that no one had any idea what was

going on. Social worker's job was to keep him until the funding was used

then get him to a nursing home pronto. Same rehab company, new location

after serious kidney infection, peg insertion at VA Hospital Shreveport.

Same set up except doctors came at 4AM and print outs suggested few

visitors. List of medications for infections and PD, food and pump came

home with him along with his exercise sheets. NEVER saw or talked with a

doctor in six weeks.

When on-line doctors are available for homebound patients, I'll enroll Jan

right away.

Without this list my perseverant Jan would NOT have survived. I STILL have

much to learn to provide his needs and comfort. I would like to understand

many of the perplexing things that have happened.

Thank you for some more clarification about florinef. Wonderful son is

here with provisions . Happy Holidays.

LA Louise thankful for so many caring friends.