Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 Liza: Do you know from research or other perceptions if HEDS and other EDS types develop s Disease. My reason for asking is that my daughter was put on Fludrocortisone 0.1 mgm BID by Dr. Grubb. It had a very good effect, within 3 days she had more animation in her face, posture and improved energy. I understand that the logic behind this was that Florinef helps retain salt and thereby retain water and improve circulating blood volume with result that BP is improved elevated some. Low standing BP and tachycardia were her problems. The biggest thing we noticed was that her severe palor was reduced. Forinef is a glucocorticoid used in the treatment of the Autoimmune disorder s disease (one of the drugs). Her dosage is very much less than that used in s but the other very discomforting symptom she had was a very sore throat particularly worse in am and the very bad breath that goes with it. This was also improved but returns occasionally. I am thinking that there is an autoimmune component....or possibly even basis in HEDS and possibly even other types of EDS. How do you see this or what research is out there? Bernie Re: doctors appointment today and er visit In a message dated 8/27/2004 7:04:33 PM Pacific Standard Time, Thing1973@... writes: Caring Medical - Treatment of 's Disease oops, links didn't come thru...... http://www.caringmedical.com/symptoms/condition.asp?condition_id=954 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 28, 2004 Report Share Posted August 28, 2004 I've been on florinef for the last 6 weeks, my cardiologist raised it a few weeks from .1 mg to .2 mgs. Still it has not seemed to help increase my BP, there have been some days it would help but more days than not it is still fairly low. Re: doctors appointment today and er visit > > In a message dated 8/27/2004 7:04:33 PM Pacific Standard Time, > Thing1973@... writes: > Caring Medical - Treatment of 's Disease > oops, links didn't come thru...... > > http://www.caringmedical.com/symptoms/condition.asp?condition_id=954 > > > Quote Link to comment Share on other sites More sharing options...
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