Females - Gaining/losing lots of water weight in short periods

CFkitty

New member
Do any women here have cycles of edema where, over the course of they day, gain more than the "average" amount of water weight over the course of a day or days, only to eventually lose it again in a short period of time (day, days)?

I have been dealing with a condition called Idiopathic Cyclic Edema chronically since October 08, but on and off for years (once I looked back at my history).

I have experienced weight gains/losses of 5, 8, 12+ pounds in a 24 period. This was once evidenced as an inpatient, as they took my weight one day 1 and 3 and noticed a 12-pound loss. It also maifests in greater but slower weight gains over a week or two. At one point, I had an 18 pound gain in a matter of a couple of weeks (right after I started Insulin). At the time, the doctor said I was "using my calories better" but at a point after over year, I lose 20 pounds in three days.

At times, I thought it was the insulin or type of insulin. Other times, I wracked my brain over my caloric intake and trying to "burn fat" by exercising. In fact, the day after exercising, I'd gain a good 5 pounds. There way no way in h--- that I had eaten enough in a few days to gain that weight.

My primary care consulted with a nephrologist who suggested I.C.E. I fit the profile and long story short I am on a medication that treats the hormone that is theorized to be responsible for telling the kidneys to hold onto water. It had worked for a while, with increases in dosegage, but I am now again gaining and gaining (with short bouts in between of losing rapidly).

Does any one else here experience this? The edema is accompanied by arm, abdominal, face and foot (not ankle) swelling, pain in the back, legs and arms, mood issues, extreme fatigue (where you just have to sleep). Standing for too long, sleeping, and EXERCISE can exacerbate things. They have tested my thyroid, kidney function, looked for Congestive heart failure, monitored my sodium...everything you can think of.

I take Spironolactone. The hormone in question is Aldesterone. There is also a theory that the veins release too much non-blood fluid into the body, causing the swelling. Other types of diuretics are contraindicated and not useful for I.C.E.

If anyone else is going through something similar, please let me know. There isn't a ton of info out there, but I.C.E. happens to women of menstruating age and then disappears with menopause. I was hoping to find someone with the same issues and see how you are dealing with it. I have been weighing myself every morning and evening (per doctor rec) since May and the change over a day or a week are crazy. Up, down, up down.

Thanks so much.
 

CFkitty

New member
Do any women here have cycles of edema where, over the course of they day, gain more than the "average" amount of water weight over the course of a day or days, only to eventually lose it again in a short period of time (day, days)?

I have been dealing with a condition called Idiopathic Cyclic Edema chronically since October 08, but on and off for years (once I looked back at my history).

I have experienced weight gains/losses of 5, 8, 12+ pounds in a 24 period. This was once evidenced as an inpatient, as they took my weight one day 1 and 3 and noticed a 12-pound loss. It also maifests in greater but slower weight gains over a week or two. At one point, I had an 18 pound gain in a matter of a couple of weeks (right after I started Insulin). At the time, the doctor said I was "using my calories better" but at a point after over year, I lose 20 pounds in three days.

At times, I thought it was the insulin or type of insulin. Other times, I wracked my brain over my caloric intake and trying to "burn fat" by exercising. In fact, the day after exercising, I'd gain a good 5 pounds. There way no way in h--- that I had eaten enough in a few days to gain that weight.

My primary care consulted with a nephrologist who suggested I.C.E. I fit the profile and long story short I am on a medication that treats the hormone that is theorized to be responsible for telling the kidneys to hold onto water. It had worked for a while, with increases in dosegage, but I am now again gaining and gaining (with short bouts in between of losing rapidly).

Does any one else here experience this? The edema is accompanied by arm, abdominal, face and foot (not ankle) swelling, pain in the back, legs and arms, mood issues, extreme fatigue (where you just have to sleep). Standing for too long, sleeping, and EXERCISE can exacerbate things. They have tested my thyroid, kidney function, looked for Congestive heart failure, monitored my sodium...everything you can think of.

I take Spironolactone. The hormone in question is Aldesterone. There is also a theory that the veins release too much non-blood fluid into the body, causing the swelling. Other types of diuretics are contraindicated and not useful for I.C.E.

If anyone else is going through something similar, please let me know. There isn't a ton of info out there, but I.C.E. happens to women of menstruating age and then disappears with menopause. I was hoping to find someone with the same issues and see how you are dealing with it. I have been weighing myself every morning and evening (per doctor rec) since May and the change over a day or a week are crazy. Up, down, up down.

Thanks so much.
 

CFkitty

New member
Do any women here have cycles of edema where, over the course of they day, gain more than the "average" amount of water weight over the course of a day or days, only to eventually lose it again in a short period of time (day, days)?

I have been dealing with a condition called Idiopathic Cyclic Edema chronically since October 08, but on and off for years (once I looked back at my history).

I have experienced weight gains/losses of 5, 8, 12+ pounds in a 24 period. This was once evidenced as an inpatient, as they took my weight one day 1 and 3 and noticed a 12-pound loss. It also maifests in greater but slower weight gains over a week or two. At one point, I had an 18 pound gain in a matter of a couple of weeks (right after I started Insulin). At the time, the doctor said I was "using my calories better" but at a point after over year, I lose 20 pounds in three days.

At times, I thought it was the insulin or type of insulin. Other times, I wracked my brain over my caloric intake and trying to "burn fat" by exercising. In fact, the day after exercising, I'd gain a good 5 pounds. There way no way in h--- that I had eaten enough in a few days to gain that weight.

My primary care consulted with a nephrologist who suggested I.C.E. I fit the profile and long story short I am on a medication that treats the hormone that is theorized to be responsible for telling the kidneys to hold onto water. It had worked for a while, with increases in dosegage, but I am now again gaining and gaining (with short bouts in between of losing rapidly).

Does any one else here experience this? The edema is accompanied by arm, abdominal, face and foot (not ankle) swelling, pain in the back, legs and arms, mood issues, extreme fatigue (where you just have to sleep). Standing for too long, sleeping, and EXERCISE can exacerbate things. They have tested my thyroid, kidney function, looked for Congestive heart failure, monitored my sodium...everything you can think of.

I take Spironolactone. The hormone in question is Aldesterone. There is also a theory that the veins release too much non-blood fluid into the body, causing the swelling. Other types of diuretics are contraindicated and not useful for I.C.E.

If anyone else is going through something similar, please let me know. There isn't a ton of info out there, but I.C.E. happens to women of menstruating age and then disappears with menopause. I was hoping to find someone with the same issues and see how you are dealing with it. I have been weighing myself every morning and evening (per doctor rec) since May and the change over a day or a week are crazy. Up, down, up down.

Thanks so much.
 

CFkitty

New member
Do any women here have cycles of edema where, over the course of they day, gain more than the "average" amount of water weight over the course of a day or days, only to eventually lose it again in a short period of time (day, days)?

I have been dealing with a condition called Idiopathic Cyclic Edema chronically since October 08, but on and off for years (once I looked back at my history).

I have experienced weight gains/losses of 5, 8, 12+ pounds in a 24 period. This was once evidenced as an inpatient, as they took my weight one day 1 and 3 and noticed a 12-pound loss. It also maifests in greater but slower weight gains over a week or two. At one point, I had an 18 pound gain in a matter of a couple of weeks (right after I started Insulin). At the time, the doctor said I was "using my calories better" but at a point after over year, I lose 20 pounds in three days.

At times, I thought it was the insulin or type of insulin. Other times, I wracked my brain over my caloric intake and trying to "burn fat" by exercising. In fact, the day after exercising, I'd gain a good 5 pounds. There way no way in h--- that I had eaten enough in a few days to gain that weight.

My primary care consulted with a nephrologist who suggested I.C.E. I fit the profile and long story short I am on a medication that treats the hormone that is theorized to be responsible for telling the kidneys to hold onto water. It had worked for a while, with increases in dosegage, but I am now again gaining and gaining (with short bouts in between of losing rapidly).

Does any one else here experience this? The edema is accompanied by arm, abdominal, face and foot (not ankle) swelling, pain in the back, legs and arms, mood issues, extreme fatigue (where you just have to sleep). Standing for too long, sleeping, and EXERCISE can exacerbate things. They have tested my thyroid, kidney function, looked for Congestive heart failure, monitored my sodium...everything you can think of.

I take Spironolactone. The hormone in question is Aldesterone. There is also a theory that the veins release too much non-blood fluid into the body, causing the swelling. Other types of diuretics are contraindicated and not useful for I.C.E.

If anyone else is going through something similar, please let me know. There isn't a ton of info out there, but I.C.E. happens to women of menstruating age and then disappears with menopause. I was hoping to find someone with the same issues and see how you are dealing with it. I have been weighing myself every morning and evening (per doctor rec) since May and the change over a day or a week are crazy. Up, down, up down.

Thanks so much.
 

CFkitty

New member
Do any women here have cycles of edema where, over the course of they day, gain more than the "average" amount of water weight over the course of a day or days, only to eventually lose it again in a short period of time (day, days)?
<br />
<br />I have been dealing with a condition called Idiopathic Cyclic Edema chronically since October 08, but on and off for years (once I looked back at my history).
<br />
<br />I have experienced weight gains/losses of 5, 8, 12+ pounds in a 24 period. This was once evidenced as an inpatient, as they took my weight one day 1 and 3 and noticed a 12-pound loss. It also maifests in greater but slower weight gains over a week or two. At one point, I had an 18 pound gain in a matter of a couple of weeks (right after I started Insulin). At the time, the doctor said I was "using my calories better" but at a point after over year, I lose 20 pounds in three days.
<br />
<br />At times, I thought it was the insulin or type of insulin. Other times, I wracked my brain over my caloric intake and trying to "burn fat" by exercising. In fact, the day after exercising, I'd gain a good 5 pounds. There way no way in h--- that I had eaten enough in a few days to gain that weight.
<br />
<br />My primary care consulted with a nephrologist who suggested I.C.E. I fit the profile and long story short I am on a medication that treats the hormone that is theorized to be responsible for telling the kidneys to hold onto water. It had worked for a while, with increases in dosegage, but I am now again gaining and gaining (with short bouts in between of losing rapidly).
<br />
<br />Does any one else here experience this? The edema is accompanied by arm, abdominal, face and foot (not ankle) swelling, pain in the back, legs and arms, mood issues, extreme fatigue (where you just have to sleep). Standing for too long, sleeping, and EXERCISE can exacerbate things. They have tested my thyroid, kidney function, looked for Congestive heart failure, monitored my sodium...everything you can think of.
<br />
<br />I take Spironolactone. The hormone in question is Aldesterone. There is also a theory that the veins release too much non-blood fluid into the body, causing the swelling. Other types of diuretics are contraindicated and not useful for I.C.E.
<br />
<br />If anyone else is going through something similar, please let me know. There isn't a ton of info out there, but I.C.E. happens to women of menstruating age and then disappears with menopause. I was hoping to find someone with the same issues and see how you are dealing with it. I have been weighing myself every morning and evening (per doctor rec) since May and the change over a day or a week are crazy. Up, down, up down.
<br />
<br />Thanks so much.
 

PepperKitty

New member
I have the same problem with chronic edema. I will gain 10+ pounds in 2 days, then lose it just as fast, only to regain it all over again. It drives me crazy! I'm always at a very low weight, so I watch it closely. The problem is with the weight fluctuation I can't tell if I've lost weight or not! I swell in the same places you do, but I also swell in the knees, legs & ankles. I also get the other painful symptoms you describe.

My CF doctor says it's caused by IV Tobramycin use, I've had mild edema problems for years, but it's worsened since I was overdosed with IV Tobra 3 years ago. I did have kidney failure at the time, but except for stones my kidney function is ok now. I do have major problems controlling my potassium tho. My CF is causing heart issues, but I doubt it's causing my edema.

I've never heard of I.C.E. but now I'm wondering if I could have it. Thanks for the info!
 

PepperKitty

New member
I have the same problem with chronic edema. I will gain 10+ pounds in 2 days, then lose it just as fast, only to regain it all over again. It drives me crazy! I'm always at a very low weight, so I watch it closely. The problem is with the weight fluctuation I can't tell if I've lost weight or not! I swell in the same places you do, but I also swell in the knees, legs & ankles. I also get the other painful symptoms you describe.

My CF doctor says it's caused by IV Tobramycin use, I've had mild edema problems for years, but it's worsened since I was overdosed with IV Tobra 3 years ago. I did have kidney failure at the time, but except for stones my kidney function is ok now. I do have major problems controlling my potassium tho. My CF is causing heart issues, but I doubt it's causing my edema.

I've never heard of I.C.E. but now I'm wondering if I could have it. Thanks for the info!
 

PepperKitty

New member
I have the same problem with chronic edema. I will gain 10+ pounds in 2 days, then lose it just as fast, only to regain it all over again. It drives me crazy! I'm always at a very low weight, so I watch it closely. The problem is with the weight fluctuation I can't tell if I've lost weight or not! I swell in the same places you do, but I also swell in the knees, legs & ankles. I also get the other painful symptoms you describe.

My CF doctor says it's caused by IV Tobramycin use, I've had mild edema problems for years, but it's worsened since I was overdosed with IV Tobra 3 years ago. I did have kidney failure at the time, but except for stones my kidney function is ok now. I do have major problems controlling my potassium tho. My CF is causing heart issues, but I doubt it's causing my edema.

I've never heard of I.C.E. but now I'm wondering if I could have it. Thanks for the info!
 

PepperKitty

New member
I have the same problem with chronic edema. I will gain 10+ pounds in 2 days, then lose it just as fast, only to regain it all over again. It drives me crazy! I'm always at a very low weight, so I watch it closely. The problem is with the weight fluctuation I can't tell if I've lost weight or not! I swell in the same places you do, but I also swell in the knees, legs & ankles. I also get the other painful symptoms you describe.

My CF doctor says it's caused by IV Tobramycin use, I've had mild edema problems for years, but it's worsened since I was overdosed with IV Tobra 3 years ago. I did have kidney failure at the time, but except for stones my kidney function is ok now. I do have major problems controlling my potassium tho. My CF is causing heart issues, but I doubt it's causing my edema.

I've never heard of I.C.E. but now I'm wondering if I could have it. Thanks for the info!
 

PepperKitty

New member
I have the same problem with chronic edema. I will gain 10+ pounds in 2 days, then lose it just as fast, only to regain it all over again. It drives me crazy! I'm always at a very low weight, so I watch it closely. The problem is with the weight fluctuation I can't tell if I've lost weight or not! I swell in the same places you do, but I also swell in the knees, legs & ankles. I also get the other painful symptoms you describe.
<br />
<br />My CF doctor says it's caused by IV Tobramycin use, I've had mild edema problems for years, but it's worsened since I was overdosed with IV Tobra 3 years ago. I did have kidney failure at the time, but except for stones my kidney function is ok now. I do have major problems controlling my potassium tho. My CF is causing heart issues, but I doubt it's causing my edema.
<br />
<br />I've never heard of I.C.E. but now I'm wondering if I could have it. Thanks for the info!
 

CFkitty

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>PepperKitty</b></i>

I have the same problem with chronic edema. I will gain 10+ pounds in 2 days, then lose it just as fast, only to regain it all over again. It drives me crazy! I'm always at a very low weight, so I watch it closely. The problem is with the weight fluctuation I can't tell if I've lost weight or not! I swell in the same places you do, but I also swell in the knees, legs & ankles. I also get the other painful symptoms you describe.

My CF doctor says it's caused by IV Tobramycin use, I've had mild edema problems for years, but it's worsened since I was overdosed with IV Tobra 3 years ago. I did have kidney failure at the time, but except for stones my kidney function is ok now. I do have major problems controlling my potassium tho. My CF is causing heart issues, but I doubt it's causing my edema.

I've never heard of I.C.E. but now I'm wondering if I could have it. Thanks for the info!</end quote></div>



Pepper, it may not be the kidney itself but the hormones which tell the kidney what to do. (Oddly I had kidney stones x10 and kidney failure twice in my life, unrelated to THIS edema issue. Please ask your primary doctor to look into Idiopathic Cyclic Edema. The hormone responsible is Aldesterone. There is a checklist where if you answer yes to a certain number of questions, you likely have it. I saw a kidney specialist but he said that it's the HORMONE telling the kidney the wrong thing to do - hold onto water.

Loop diuertics (water pills) like Lasix make the problem worse (messing up the messages to the kidneys). The medicine I take that affects Aldesterone hormone has worked - Spironolactone, but we have had to play with doses. There are a few other meds that help - progesterone like in birth control, but that gave me blood clots with PICC lines. There is another med that is said to help but we haven't gone there yet - it's an ACE inhibitor for hypertension.

Please let me know if you pursue this - and maybe not just your CF doctor but an internal medicine doctor. It's more and more commonly diagnosed now than even 6 months ago. If I can find others to commiserate/share with, it might help. When my edema is way up, I feel emotionally and physically awful. Plus it wreaks havoc on my self esteem bc even my sox don't fit!

Take care and let me know what happens. Thank you SO SO much for replying.

PS Love the username!
 

CFkitty

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>PepperKitty</b></i>

I have the same problem with chronic edema. I will gain 10+ pounds in 2 days, then lose it just as fast, only to regain it all over again. It drives me crazy! I'm always at a very low weight, so I watch it closely. The problem is with the weight fluctuation I can't tell if I've lost weight or not! I swell in the same places you do, but I also swell in the knees, legs & ankles. I also get the other painful symptoms you describe.

My CF doctor says it's caused by IV Tobramycin use, I've had mild edema problems for years, but it's worsened since I was overdosed with IV Tobra 3 years ago. I did have kidney failure at the time, but except for stones my kidney function is ok now. I do have major problems controlling my potassium tho. My CF is causing heart issues, but I doubt it's causing my edema.

I've never heard of I.C.E. but now I'm wondering if I could have it. Thanks for the info!</end quote></div>



Pepper, it may not be the kidney itself but the hormones which tell the kidney what to do. (Oddly I had kidney stones x10 and kidney failure twice in my life, unrelated to THIS edema issue. Please ask your primary doctor to look into Idiopathic Cyclic Edema. The hormone responsible is Aldesterone. There is a checklist where if you answer yes to a certain number of questions, you likely have it. I saw a kidney specialist but he said that it's the HORMONE telling the kidney the wrong thing to do - hold onto water.

Loop diuertics (water pills) like Lasix make the problem worse (messing up the messages to the kidneys). The medicine I take that affects Aldesterone hormone has worked - Spironolactone, but we have had to play with doses. There are a few other meds that help - progesterone like in birth control, but that gave me blood clots with PICC lines. There is another med that is said to help but we haven't gone there yet - it's an ACE inhibitor for hypertension.

Please let me know if you pursue this - and maybe not just your CF doctor but an internal medicine doctor. It's more and more commonly diagnosed now than even 6 months ago. If I can find others to commiserate/share with, it might help. When my edema is way up, I feel emotionally and physically awful. Plus it wreaks havoc on my self esteem bc even my sox don't fit!

Take care and let me know what happens. Thank you SO SO much for replying.

PS Love the username!
 

CFkitty

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>PepperKitty</b></i>

I have the same problem with chronic edema. I will gain 10+ pounds in 2 days, then lose it just as fast, only to regain it all over again. It drives me crazy! I'm always at a very low weight, so I watch it closely. The problem is with the weight fluctuation I can't tell if I've lost weight or not! I swell in the same places you do, but I also swell in the knees, legs & ankles. I also get the other painful symptoms you describe.

My CF doctor says it's caused by IV Tobramycin use, I've had mild edema problems for years, but it's worsened since I was overdosed with IV Tobra 3 years ago. I did have kidney failure at the time, but except for stones my kidney function is ok now. I do have major problems controlling my potassium tho. My CF is causing heart issues, but I doubt it's causing my edema.

I've never heard of I.C.E. but now I'm wondering if I could have it. Thanks for the info!</end quote></div>



Pepper, it may not be the kidney itself but the hormones which tell the kidney what to do. (Oddly I had kidney stones x10 and kidney failure twice in my life, unrelated to THIS edema issue. Please ask your primary doctor to look into Idiopathic Cyclic Edema. The hormone responsible is Aldesterone. There is a checklist where if you answer yes to a certain number of questions, you likely have it. I saw a kidney specialist but he said that it's the HORMONE telling the kidney the wrong thing to do - hold onto water.

Loop diuertics (water pills) like Lasix make the problem worse (messing up the messages to the kidneys). The medicine I take that affects Aldesterone hormone has worked - Spironolactone, but we have had to play with doses. There are a few other meds that help - progesterone like in birth control, but that gave me blood clots with PICC lines. There is another med that is said to help but we haven't gone there yet - it's an ACE inhibitor for hypertension.

Please let me know if you pursue this - and maybe not just your CF doctor but an internal medicine doctor. It's more and more commonly diagnosed now than even 6 months ago. If I can find others to commiserate/share with, it might help. When my edema is way up, I feel emotionally and physically awful. Plus it wreaks havoc on my self esteem bc even my sox don't fit!

Take care and let me know what happens. Thank you SO SO much for replying.

PS Love the username!
 

CFkitty

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>PepperKitty</b></i>

I have the same problem with chronic edema. I will gain 10+ pounds in 2 days, then lose it just as fast, only to regain it all over again. It drives me crazy! I'm always at a very low weight, so I watch it closely. The problem is with the weight fluctuation I can't tell if I've lost weight or not! I swell in the same places you do, but I also swell in the knees, legs & ankles. I also get the other painful symptoms you describe.

My CF doctor says it's caused by IV Tobramycin use, I've had mild edema problems for years, but it's worsened since I was overdosed with IV Tobra 3 years ago. I did have kidney failure at the time, but except for stones my kidney function is ok now. I do have major problems controlling my potassium tho. My CF is causing heart issues, but I doubt it's causing my edema.

I've never heard of I.C.E. but now I'm wondering if I could have it. Thanks for the info!</end quote>



Pepper, it may not be the kidney itself but the hormones which tell the kidney what to do. (Oddly I had kidney stones x10 and kidney failure twice in my life, unrelated to THIS edema issue. Please ask your primary doctor to look into Idiopathic Cyclic Edema. The hormone responsible is Aldesterone. There is a checklist where if you answer yes to a certain number of questions, you likely have it. I saw a kidney specialist but he said that it's the HORMONE telling the kidney the wrong thing to do - hold onto water.

Loop diuertics (water pills) like Lasix make the problem worse (messing up the messages to the kidneys). The medicine I take that affects Aldesterone hormone has worked - Spironolactone, but we have had to play with doses. There are a few other meds that help - progesterone like in birth control, but that gave me blood clots with PICC lines. There is another med that is said to help but we haven't gone there yet - it's an ACE inhibitor for hypertension.

Please let me know if you pursue this - and maybe not just your CF doctor but an internal medicine doctor. It's more and more commonly diagnosed now than even 6 months ago. If I can find others to commiserate/share with, it might help. When my edema is way up, I feel emotionally and physically awful. Plus it wreaks havoc on my self esteem bc even my sox don't fit!

Take care and let me know what happens. Thank you SO SO much for replying.

PS Love the username!
 

CFkitty

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>PepperKitty</b></i>
<br />
<br />I have the same problem with chronic edema. I will gain 10+ pounds in 2 days, then lose it just as fast, only to regain it all over again. It drives me crazy! I'm always at a very low weight, so I watch it closely. The problem is with the weight fluctuation I can't tell if I've lost weight or not! I swell in the same places you do, but I also swell in the knees, legs & ankles. I also get the other painful symptoms you describe.
<br />
<br />My CF doctor says it's caused by IV Tobramycin use, I've had mild edema problems for years, but it's worsened since I was overdosed with IV Tobra 3 years ago. I did have kidney failure at the time, but except for stones my kidney function is ok now. I do have major problems controlling my potassium tho. My CF is causing heart issues, but I doubt it's causing my edema.
<br />
<br />I've never heard of I.C.E. but now I'm wondering if I could have it. Thanks for the info!</end quote>
<br />
<br />
<br />
<br />Pepper, it may not be the kidney itself but the hormones which tell the kidney what to do. (Oddly I had kidney stones x10 and kidney failure twice in my life, unrelated to THIS edema issue. Please ask your primary doctor to look into Idiopathic Cyclic Edema. The hormone responsible is Aldesterone. There is a checklist where if you answer yes to a certain number of questions, you likely have it. I saw a kidney specialist but he said that it's the HORMONE telling the kidney the wrong thing to do - hold onto water.
<br />
<br />Loop diuertics (water pills) like Lasix make the problem worse (messing up the messages to the kidneys). The medicine I take that affects Aldesterone hormone has worked - Spironolactone, but we have had to play with doses. There are a few other meds that help - progesterone like in birth control, but that gave me blood clots with PICC lines. There is another med that is said to help but we haven't gone there yet - it's an ACE inhibitor for hypertension.
<br />
<br />Please let me know if you pursue this - and maybe not just your CF doctor but an internal medicine doctor. It's more and more commonly diagnosed now than even 6 months ago. If I can find others to commiserate/share with, it might help. When my edema is way up, I feel emotionally and physically awful. Plus it wreaks havoc on my self esteem bc even my sox don't fit!
<br />
<br />Take care and let me know what happens. Thank you SO SO much for replying.
<br />
<br />PS Love the username!
 
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