I love my Florinef. Normally I don't like taking pills, or any medicines. I am the type of person who avoids even Advil and Tylenol, but I really love my Florinef. It has been a big help in my overall POTS treatment.
If you have POTS, OI , hypotension (low blood pressure), or hypovolemia (low blood volume), you may want to talk to your doctor about trying Florinef. Here is some information you may be interested in.
What Is Florinef?
Florinef is a synthetic form of a steroid that occurs naturally in our bodies. Flourinef is in a groupd of steroids called corticosteroids. The two primary corticosteroids in your body are cortisol and aldosterone. Corticosteroids can be broken down into glucocorticois (like cortisol) and minderalcorticoids (like aldosterone). Flourinef has properties closer to that of aldosterone. These are not the type of steroids taken by gym rats and MLB players to get big muscles.
How Does Aldosterone Work In the Body?
Aldosterone works to control the levels of sodium, potassium and water in the body. There are microscopic ion pumps in your kidneys that are responsible for maintaing the balance of fluid in your blood. If you have an excess of fluid in your blood, which could cause edema, swelling and high blood pressure, healthy kidneys will release sodium through these pumps into your urine, so it will leave your body. Generally speaking, wherever sodium goes in the body, water will follow. So when you lose sodium through urine, you lose water through urine as well. However, small nerve receptors in your kidneys can detect if you have lost too much sodium and water, which can cause dehydration and low blood pressure. When that happens, your kidneys tell your adrenal glands, through nerve and hormone messages, to produce aldosterone. The aldosterone works on your kidney to conserve sodium, and thus conserve water. Instead of excreting sodium, aldosterone will swap out the sodium with a potassium ion, and you will excrete out potassium instead. Since the sodium is retained in your blood, the water will follow the sodium and you will maintain the fluid part of your blood.
Of course, this is an oversimplified version of the complex processes that help maintain healthy blood volume, blood pressure and hydration of your body. There are dozens of hormones, nerve receptors and pressure gradient detectors involved in regulating blood volume, but the explanation above is a basic summary of the role aldosterone plays in this complex process. If you would like to learn more, you can research the "Renin-Aldosterone Axis" online.
How does Florinef work in the body?
Florinef acts like aldosterone in the body. Florinef helps the kidney preserve sodium and water, and instead causes the kidney to excrete potassium into urine. This helps increase blood volume and increase blood pressure.
How long does it take to start feeling a benefit from Florinef?
When I started the drug, I was told it would take a few weeks before I noticed any difference, and that it could take up to 6 months to get the full benefit. However, I started feeling better within 48 hours. I had such low aldosterone when they started me on it, and was having such low BP at the time that I thought I was going to die. I was 80/30 laying down flat with my feet elevated, and they couldn't even get a BP reading on me if I stood up - because I would either pass out or it would be so low the BP machine couldn't detect it. Within 48 hours of starting the Flourinef, I felt like someone had plugged in my battery and given me some juice. I contiuned to improve and feel better for about 3 or 4 months.
What about weaning off/tapering down off Florinef?
After 4 months of taking .2mg in a split AM/PM dose, I was feeling so good, I thought I should try to lower the dose. I am of the mindset that you should always take the least amount of drugs that you need to feel good. I had a neurologist at the time who told me to cut the dose in half right away and check my BP a few times a day. Whoa, was that a bad idea! I later learned from other doctors who have more experience with POTS that, unless you are stopping it for a few days to have a test, you should lower the dose very slowly, especially if you had naturally low aldosterone levels before you started taking Florinef (which is why it's so important to test your aldosterone levels before you start taking Florinef!). I was told that if you want to lower your Florinef dose, try cutting out half a pill (.05mg) once or twice a week, and then maybe 3 or 4 times the next week, and then see if you can go for 2 weeks at 1/2 a pill less. This is a much slower taper than my first doctor told me about, and I was able to go down to .1mg in the AM and .5mg in the PM for a few months. I am back up to .2 now, since I we now know I have hypovolemia, even on the Florinef - so I need as much sodium and fluid retention as I can get right now.
Why do so many POTS patients take Florinef?
POTS researchers have discovered that many POTS patients have low levels of aldosterone. This can contribute to low blood pressure and low blood volume, which can cause lightheadedness, syncope and so many other symptoms common in POTS patients. Since Florinef is the medicine that most closely mimics natural aldosterone, it is an ideal drug for patients with low aldosterone.
Researchers do not fully understand why so many POTS patients have low aldosterone, but they speculate that it may be due to problems with the autonomic nerves that help regulate the renin-aldosterone axis. This is understandable, because so many POTS patients are also known to have autonomic neuropathy or overall dysregulation of their autonomic nerves.
There are other POTS patients who do not have low aldosterone, but some of them may benefit from Florinef as well. Patients dealing with low blood pressure, lightheadedness, fainting and/or low blood volume may benefit from the increased fluid retention that Florinef causes.
How do I know if I have low aldosterone?
Your doctor can test your aldosterone levels with a blood test. If your regular doctor is not familiar with this blood test, you may want to see an endocrinologist. Ideally, your doctor should put you on a controlled sodium diet for a few days before the test, because a high salt diet can cause your aldosterone levels to decrease (which is normal). Some doctors will test your aldosterone laying down, and then after a period of sitting up or standing, since your position can impact the test results.
If your aldosterone is low, doctors can do a few additional tests to determine the cause of your low aldosterone. Some of the tests may include imaging, like ad MRI, of your adrenal glands to make sure they are normal in size and shape. They may also do an ACTH stimulation test on you, in which they give you a small dose of a drug that should increase your cortisol levels. Both coritsol and aldosterone are produced in your adrenal glands, and if one is deficient, it is important to find out if the other one is deficient too. If the ACTH stimulation test does not stimulate your adrenals to produce cortisol, you may have Addison's Disease. Fear not, because this disease can be managed through medication. President Kennedy had Addison's Disease, and he was one of the first patients in the world to regularly use Florinef as part of his treatment, because it was a very new drug at that time.
There are other causes of low aldosterone, which doctors call hypoaldosteronism. You can read more about it here.
Keep in mind, that if you have autonomic neuropathy or dysautonomia, it is very possible that your low aldosterone levels have nothing to do with your adrenal glands being unhealthy, and it may be beacuse the messaging/receptor system between your kidneys and adrenals is not working properly, which researchers suspect to be the cause of hypoaldosteronism in many POTS patients. As of right now, I am unaware of any way to test this.
What are the common side effects of Florinef?
Most patients tolerate Florinef well. The most common side effect seems to be headaches, and that could mean that the Florinef is working too well and causing you some high blood pressure. Always tell your doctor about any side effects you experience, but I would also recommend checking your BP if you have recently started Florinef and are getting bad headaches. Some people say they got headaches for the first few weeks and then their bodies adjusted to it and the headaches went away.
Since Florinef works by excreting potassium and preserving sodium, it can leave you susceptible to low potassium. Sometimes mild low potassium will not cause any symptoms, but it can be hard to tell because some of the symptoms of low potassium overlap with POTS symptoms:
-weakness, tiredness, cramping of arm or leg muscles (in severe cases, temporary paralysis)
-tingling and numbness
-nasuea
-vomitting
-abdominal cramping
-bloating
-constipation
-heart palpitations (in severe cases, heart arrythymias that are dangerous)
-low blood pressure
-lightheadedness
-fainting
-passing large amounts of urine and feeling very thirsty
-confusion
-hallucinations
-depression
-psychosis
-delirium
Since it can be hard to tell the difference between your regular old POTS lightheadedness, palpitations and muscle cramps, I would also encourage everyone taking Florinef to make a plan with their doctor before they start the drug to regularly monitor their potassium levels. Some doctors will order a blood test once a week for the first few weeks you are on it, or when they are increasing your dose. If everything is going smoothly, they may only have you get the blood test every other week or once a month.
Many doctors also prescribe low dose potassium supplements to patients in Florinef. This can prevent you from having the low potassium side effects. My doctor has prescribed me 10 mEq (milliequivalents) a day of potassium chloride, which is the equivalent of about one banana. I also eat a high potassium diet (white potatoes, dried apricots, coconut water, bananas, etc.).
Florinef can also make you more prone to infections and can mask the signs of an infection. Florinef can make you more prone to oral yeast infections (thrush). If you have a yeast infection in your mouth, everytime you swallow you are introducing the infection into your GI tract. To avoid getting thrush in the first place, I take probiotics (like Culturelle) daily, eat soy or coconut milk yogurt (because I a dairy free) and I also take a chewable acidolphilus after I brush my teeth right before bed, to prevent yeast overgrowth in my mouth. I have been on Florinef for almost a year and have never had thrush or a yeast infection, so I guess my probiotics are working. And probiotics are good for all those other GI symptoms POTS patients have too, so it can't hurt to add them to your routine.
Florinef is meant to cause fluid and sodium retention, and in many people, that leads to swelling in the legs, face or neck. This is just water retention. I get in my legs from the Florinef, but I have found that if I wear 20/30 mmHg compression stocking, it does not happen. I think this moves the fluid from my legs elsewhere in my body, but I'm not sure where because I am not having swelling anywhere else (thankfully!). I'd rather have fat legs and cankles than be passed out on the couch all day, but for some people, the swelling bothers them too much. Not everyone on Flourinef has this. Also, if you do get swelling that bothers you, you may just need a lower dose.
The other side effects of Florinef can be found here. Be sure to read the prescription inserts so you know what to look out for.
What should I know about Florinef dosing?
My doctors told me the average patient takes between .1mg and .3mg of Flourinef per day, with .2mg being the most common dose I have heard of for adult POTS patients. The pills come in .1mg tablets, and can usually be broken in half if you need a .05mg dosing. Most people take all of their Florinef first thing in the morning, sometimes even before they get out of bed. When I took .2mg in the early morning, I found that, even though Flourinef is supposed to stay in your body for over 24 hours, I had really, really low BP in the morning and it was too high at night. So I split the dose, taking a .1mg pill in the early morning and another .1mg pill right before bed (around midnight for me). That has helped me have more even BP throughout the day.
No matter what dose you take, you have to increase your water and sodium intake, or the Florinef will not work. I try to drink a large amount of fluids with it, to prevent stomach upset. Other people take it with food to prevent stomach upset.
My experience with Florinef:
Overall, I think Florinef has helped with my POTS symptoms and I have not had any really bad side effects. I have had a little water retention in my legs, which is just cosmetic and can be prevented with compression stockings.
I really know it is helping me, because I had to go off of it cold turkey for 48 hours for a test. My doctor admitted me to the hospital for observation, since the sudden stopping of Florinef could be dangerous, especially for me because I had low aldosterone before I started taking it. In the first 24 hours, my BP actually spiked, which is quite rare for me. The nurse told me this was common when you went off Florinef. She said it's like your body is trying to compensate for the loss of this important hormone, but it overshoots. The second 24 hours, I crashed as expected. My BP was back to 80/30 again laying down. My tachycardia was worse when I tried to stand up, my lightheadedness kept me in a fog all day. Thankfully, I had the test on the third morning and was given IV saline and my Florinef right after the test. Within 24 hours, I was back to my normal low BP and tachycardia levels.
I am not a doctor and none of this is meant to replace actual medical advice from your doctor. I just thought you may want to hear about my experience with Florinef. If you have had a good or bad experience with Florinef, or you want to add some information to this post, please post a comment below.
If you have POTS, OI , hypotension (low blood pressure), or hypovolemia (low blood volume), you may want to talk to your doctor about trying Florinef. Here is some information you may be interested in.
What Is Florinef?
Florinef is a synthetic form of a steroid that occurs naturally in our bodies. Flourinef is in a groupd of steroids called corticosteroids. The two primary corticosteroids in your body are cortisol and aldosterone. Corticosteroids can be broken down into glucocorticois (like cortisol) and minderalcorticoids (like aldosterone). Flourinef has properties closer to that of aldosterone. These are not the type of steroids taken by gym rats and MLB players to get big muscles.
How Does Aldosterone Work In the Body?
Aldosterone works to control the levels of sodium, potassium and water in the body. There are microscopic ion pumps in your kidneys that are responsible for maintaing the balance of fluid in your blood. If you have an excess of fluid in your blood, which could cause edema, swelling and high blood pressure, healthy kidneys will release sodium through these pumps into your urine, so it will leave your body. Generally speaking, wherever sodium goes in the body, water will follow. So when you lose sodium through urine, you lose water through urine as well. However, small nerve receptors in your kidneys can detect if you have lost too much sodium and water, which can cause dehydration and low blood pressure. When that happens, your kidneys tell your adrenal glands, through nerve and hormone messages, to produce aldosterone. The aldosterone works on your kidney to conserve sodium, and thus conserve water. Instead of excreting sodium, aldosterone will swap out the sodium with a potassium ion, and you will excrete out potassium instead. Since the sodium is retained in your blood, the water will follow the sodium and you will maintain the fluid part of your blood.
Of course, this is an oversimplified version of the complex processes that help maintain healthy blood volume, blood pressure and hydration of your body. There are dozens of hormones, nerve receptors and pressure gradient detectors involved in regulating blood volume, but the explanation above is a basic summary of the role aldosterone plays in this complex process. If you would like to learn more, you can research the "Renin-Aldosterone Axis" online.
How does Florinef work in the body?
Florinef acts like aldosterone in the body. Florinef helps the kidney preserve sodium and water, and instead causes the kidney to excrete potassium into urine. This helps increase blood volume and increase blood pressure.
How long does it take to start feeling a benefit from Florinef?
When I started the drug, I was told it would take a few weeks before I noticed any difference, and that it could take up to 6 months to get the full benefit. However, I started feeling better within 48 hours. I had such low aldosterone when they started me on it, and was having such low BP at the time that I thought I was going to die. I was 80/30 laying down flat with my feet elevated, and they couldn't even get a BP reading on me if I stood up - because I would either pass out or it would be so low the BP machine couldn't detect it. Within 48 hours of starting the Flourinef, I felt like someone had plugged in my battery and given me some juice. I contiuned to improve and feel better for about 3 or 4 months.
What about weaning off/tapering down off Florinef?
After 4 months of taking .2mg in a split AM/PM dose, I was feeling so good, I thought I should try to lower the dose. I am of the mindset that you should always take the least amount of drugs that you need to feel good. I had a neurologist at the time who told me to cut the dose in half right away and check my BP a few times a day. Whoa, was that a bad idea! I later learned from other doctors who have more experience with POTS that, unless you are stopping it for a few days to have a test, you should lower the dose very slowly, especially if you had naturally low aldosterone levels before you started taking Florinef (which is why it's so important to test your aldosterone levels before you start taking Florinef!). I was told that if you want to lower your Florinef dose, try cutting out half a pill (.05mg) once or twice a week, and then maybe 3 or 4 times the next week, and then see if you can go for 2 weeks at 1/2 a pill less. This is a much slower taper than my first doctor told me about, and I was able to go down to .1mg in the AM and .5mg in the PM for a few months. I am back up to .2 now, since I we now know I have hypovolemia, even on the Florinef - so I need as much sodium and fluid retention as I can get right now.
Why do so many POTS patients take Florinef?
POTS researchers have discovered that many POTS patients have low levels of aldosterone. This can contribute to low blood pressure and low blood volume, which can cause lightheadedness, syncope and so many other symptoms common in POTS patients. Since Florinef is the medicine that most closely mimics natural aldosterone, it is an ideal drug for patients with low aldosterone.
Researchers do not fully understand why so many POTS patients have low aldosterone, but they speculate that it may be due to problems with the autonomic nerves that help regulate the renin-aldosterone axis. This is understandable, because so many POTS patients are also known to have autonomic neuropathy or overall dysregulation of their autonomic nerves.
There are other POTS patients who do not have low aldosterone, but some of them may benefit from Florinef as well. Patients dealing with low blood pressure, lightheadedness, fainting and/or low blood volume may benefit from the increased fluid retention that Florinef causes.
How do I know if I have low aldosterone?
Your doctor can test your aldosterone levels with a blood test. If your regular doctor is not familiar with this blood test, you may want to see an endocrinologist. Ideally, your doctor should put you on a controlled sodium diet for a few days before the test, because a high salt diet can cause your aldosterone levels to decrease (which is normal). Some doctors will test your aldosterone laying down, and then after a period of sitting up or standing, since your position can impact the test results.
If your aldosterone is low, doctors can do a few additional tests to determine the cause of your low aldosterone. Some of the tests may include imaging, like ad MRI, of your adrenal glands to make sure they are normal in size and shape. They may also do an ACTH stimulation test on you, in which they give you a small dose of a drug that should increase your cortisol levels. Both coritsol and aldosterone are produced in your adrenal glands, and if one is deficient, it is important to find out if the other one is deficient too. If the ACTH stimulation test does not stimulate your adrenals to produce cortisol, you may have Addison's Disease. Fear not, because this disease can be managed through medication. President Kennedy had Addison's Disease, and he was one of the first patients in the world to regularly use Florinef as part of his treatment, because it was a very new drug at that time.
There are other causes of low aldosterone, which doctors call hypoaldosteronism. You can read more about it here.
Keep in mind, that if you have autonomic neuropathy or dysautonomia, it is very possible that your low aldosterone levels have nothing to do with your adrenal glands being unhealthy, and it may be beacuse the messaging/receptor system between your kidneys and adrenals is not working properly, which researchers suspect to be the cause of hypoaldosteronism in many POTS patients. As of right now, I am unaware of any way to test this.
What are the common side effects of Florinef?
Most patients tolerate Florinef well. The most common side effect seems to be headaches, and that could mean that the Florinef is working too well and causing you some high blood pressure. Always tell your doctor about any side effects you experience, but I would also recommend checking your BP if you have recently started Florinef and are getting bad headaches. Some people say they got headaches for the first few weeks and then their bodies adjusted to it and the headaches went away.
Since Florinef works by excreting potassium and preserving sodium, it can leave you susceptible to low potassium. Sometimes mild low potassium will not cause any symptoms, but it can be hard to tell because some of the symptoms of low potassium overlap with POTS symptoms:
-weakness, tiredness, cramping of arm or leg muscles (in severe cases, temporary paralysis)
-tingling and numbness
-nasuea
-vomitting
-abdominal cramping
-bloating
-constipation
-heart palpitations (in severe cases, heart arrythymias that are dangerous)
-low blood pressure
-lightheadedness
-fainting
-passing large amounts of urine and feeling very thirsty
-confusion
-hallucinations
-depression
-psychosis
-delirium
Since it can be hard to tell the difference between your regular old POTS lightheadedness, palpitations and muscle cramps, I would also encourage everyone taking Florinef to make a plan with their doctor before they start the drug to regularly monitor their potassium levels. Some doctors will order a blood test once a week for the first few weeks you are on it, or when they are increasing your dose. If everything is going smoothly, they may only have you get the blood test every other week or once a month.
Many doctors also prescribe low dose potassium supplements to patients in Florinef. This can prevent you from having the low potassium side effects. My doctor has prescribed me 10 mEq (milliequivalents) a day of potassium chloride, which is the equivalent of about one banana. I also eat a high potassium diet (white potatoes, dried apricots, coconut water, bananas, etc.).
Florinef can also make you more prone to infections and can mask the signs of an infection. Florinef can make you more prone to oral yeast infections (thrush). If you have a yeast infection in your mouth, everytime you swallow you are introducing the infection into your GI tract. To avoid getting thrush in the first place, I take probiotics (like Culturelle) daily, eat soy or coconut milk yogurt (because I a dairy free) and I also take a chewable acidolphilus after I brush my teeth right before bed, to prevent yeast overgrowth in my mouth. I have been on Florinef for almost a year and have never had thrush or a yeast infection, so I guess my probiotics are working. And probiotics are good for all those other GI symptoms POTS patients have too, so it can't hurt to add them to your routine.
Florinef is meant to cause fluid and sodium retention, and in many people, that leads to swelling in the legs, face or neck. This is just water retention. I get in my legs from the Florinef, but I have found that if I wear 20/30 mmHg compression stocking, it does not happen. I think this moves the fluid from my legs elsewhere in my body, but I'm not sure where because I am not having swelling anywhere else (thankfully!). I'd rather have fat legs and cankles than be passed out on the couch all day, but for some people, the swelling bothers them too much. Not everyone on Flourinef has this. Also, if you do get swelling that bothers you, you may just need a lower dose.
The other side effects of Florinef can be found here. Be sure to read the prescription inserts so you know what to look out for.
What should I know about Florinef dosing?
My doctors told me the average patient takes between .1mg and .3mg of Flourinef per day, with .2mg being the most common dose I have heard of for adult POTS patients. The pills come in .1mg tablets, and can usually be broken in half if you need a .05mg dosing. Most people take all of their Florinef first thing in the morning, sometimes even before they get out of bed. When I took .2mg in the early morning, I found that, even though Flourinef is supposed to stay in your body for over 24 hours, I had really, really low BP in the morning and it was too high at night. So I split the dose, taking a .1mg pill in the early morning and another .1mg pill right before bed (around midnight for me). That has helped me have more even BP throughout the day.
No matter what dose you take, you have to increase your water and sodium intake, or the Florinef will not work. I try to drink a large amount of fluids with it, to prevent stomach upset. Other people take it with food to prevent stomach upset.
My experience with Florinef:
Overall, I think Florinef has helped with my POTS symptoms and I have not had any really bad side effects. I have had a little water retention in my legs, which is just cosmetic and can be prevented with compression stockings.
I really know it is helping me, because I had to go off of it cold turkey for 48 hours for a test. My doctor admitted me to the hospital for observation, since the sudden stopping of Florinef could be dangerous, especially for me because I had low aldosterone before I started taking it. In the first 24 hours, my BP actually spiked, which is quite rare for me. The nurse told me this was common when you went off Florinef. She said it's like your body is trying to compensate for the loss of this important hormone, but it overshoots. The second 24 hours, I crashed as expected. My BP was back to 80/30 again laying down. My tachycardia was worse when I tried to stand up, my lightheadedness kept me in a fog all day. Thankfully, I had the test on the third morning and was given IV saline and my Florinef right after the test. Within 24 hours, I was back to my normal low BP and tachycardia levels.
I am not a doctor and none of this is meant to replace actual medical advice from your doctor. I just thought you may want to hear about my experience with Florinef. If you have had a good or bad experience with Florinef, or you want to add some information to this post, please post a comment below.
I love my Florinef. i have some swelling in my legs but its worth it being able to get outside with my kids and to do daily tasks. I refused to take it for the first month it was given to me and then finally started. So glad I did. It has given me my life. I can go shopping!! I do have the headaches but I have bad sinus problems to so can't say its all the Florinef. Little weight gain.
ReplyDeleteMy doctor put me on Florinef last fall. He put me on .4mg each night... I wonder why he said to take it at night if most take it in the morning... it has worked for me, though.
ReplyDeleteI always get 1-3 days of severe fatigue any time I exercise because my blood pressure would fall off a cliff. My symptoms didnt match POTS, or NMH, but were very similar in many ways. So I tried florinief, my BP jumped 10 points, and my post exertional fatigue went away. YAAAAY FLORINEF! Great article by the way. Ive been researching florinef for weeks and this is the best page ive found so far.
ReplyDeleteMy teen-aged daughter has been on Florinef for almost 3 years for NCS. It seemed to really help her lightheadedness at first, but now she is experiencing many of the "rare" side effects such as profound weakness in extremities, feeling of "dead legs", upper gastric pain and occasional back pain, acne and headaches, decreased immune response (susceptible to many bugs/colds)with a recent episode of temporary paralysis. Her body is also dependent upon it--it was prescribed in good faith as an artificial means of maintaining bp, but I am concerned about the long-term effects wreaking havoc in so many different parts of the body. She is on prescription strength potassium, but over time Florinef can leech potassium and impact calcium loss in the body. We are revisiting tapering off, but it takes a long, long time. NCS is a difficult condition, but not sure if the long term possible side effects have worsened her overall.
ReplyDeleteFirst of all thank you to the creator of this initial blog, very good and helpful, and agree it is among the best out there. To the parent of the teen, I too have a teen, son, w/ NCS for over two years and been on Florinef for that time. I too am starting to wonder about some of the rare side effects after long term use. We are starting to think the florinef is causing frequent infections - sinus, ear, and soar throat that won't go away. My son's situation is complicated by the fact that he also has JHS - joint hpermobility syndrome (having joint hypermobility or "double-jointed" is not that rare, but having a lot of pain in the joints that have the hypermobility is rare, and that is when they call it JHS). It's likely actually Ehlers-Danlos Syndrome which encompasses both hypermobility / joint pain and syncope symptoms; but the actual diagnosis for Ehlers-Danlos won't come until getting a genetic test which we are looking into (although no great rush to get that as the treatment is the same; my son just wants to know eventually). But just in case it will help anyone else I will share that - for the JHS he has gone through several rounds of physical therapy which all helped in varying degrees and eventually each would plateau. We are now beginning other things in the "real world" such as Tai Chi and pilates for the long haul as those are supposed to be the best for JHS patients. So the complication comes in that the meds for NCS may not be best for JHS and vice versa. At first the Dr. that diagnosed the JHS theorized that the flornief may be making the joint pain worse by weakening the muscles over time. But we tried going off of Florinef for about 5 months and joint pain didn't seem to get much better. Son was on DDAVP w/ midodrine to use as needed to help control the NCS/POTS symptoms while off of Florinef. He didn't have much dizziness problems while off of florinef and rarely used the DDAVP or midodrine so we thought maybe he had outgrown the dizzy spells. But then they started coming back. They did come back though after he went on neurontin, low dose, to try to help control the joint pain from JHS. All the medication adjustments take time. But I think my long term goal is to get him back off florinef (to see if frequent infections stop) and to go off neurontin too (which will hopefully dminish dizziness), and then just use the DDAVP and midodrine to manage the (hopefully) occasional syncope issues, and unfortunately deal w/ the joint pain (which will hopefully get better w/ the other exercise therapies). It would be ideal if I could find one doctor who could treat both his NCS and his JHS so I didn't have to go against the grain of one doctor to satisfy the other, but that's life I guess. FYI - the best web site I found for JHS or Ehlers-Danlos is EDNF.ORG (Ehlers-Danlos National Foundation); they are very generous in what they share including slides from prior scientific conferences and it has saved me volumes of "googling" time. Good luck to all!
DeleteFlorinef has given me my life back, at least a sizable portion of it. I was diagnosed with orthostatic hypotension ("substantial", my dr. said) and started on .1 mg. I was still having problems, including very erratic blood pressure and pulse rate so he upped it to .2mg. That makes it possible for me to do light exercise, and chores in small amounts. I still get exhausted if I overdo (and it doesn't take too much to overdo!), but I'm not dragging around the entire day, and I don't have grey-outs every time I stand up.
ReplyDeleteMy dr. didn't test to see if my aldosterone levels were low, though. I do wish he had - I'd like to know if my low BP is due to adrenal or neurological issues.
Patti, I have lyme, bart and babesia, thyroid disease and stage 3 adrenal fatigue. We can't treat my infections until we get these other things under control, I also have severe candiada. I work with a integrative MD, who does blood work, but mostly goes off clinical symptoms. If my other doc of 15 years would have done this, I don't think I would be this bad off. How are you doing now?
ReplyDeleteI hope I get to where alot of you are. I am couch bound, home bound, have to walk with a cane. Would love to connect with any of you on facebook. It is different working with a doctor that does more based off symptoms, but it's nice to have found one that looks past just what a test says if your still so sick.
Anonymous, I am glad you have found a good integrative doctor. I saw one too, to rule out Lyme. I wish more doctors would practice like that - by looking at the whole person, not jut one organ or one blood test at a time.
DeleteThere are many supports groups on Facebook for POTS, Lyme and just about everything else. One of the largest ones for POTS is called simply, "POTS." Here's the link:
https://www.facebook.com/groups/75183049224/
Here's another good one, The Dysautonomia Connection:
https://www.facebook.com/groups/thedysautonomiaconnection/?fref=ts
Hi -
ReplyDeleteI have low BP high renin and relatively low aldosterone. I always had aldosterone at about 4-5 in the morning. Two weeks ago it was at 11 at 9am but my renin was 430 (range 110-330 upright). So the doc said my renin was forcing my adrenal glands to work harder just to raise my aldo to not even midrange.
I've tried taking florinef a few times each time- when i begin especially - I feel worse like more tired. I just started the stuff two days ago at half a .1mg pill. about .05 I guess it is. It's a standard dosage. - I am totally lethargic and i have felt this way before. I am wondering do I have to get used to it? Or am I starting off too low a dose and i need more? Or am i starting too high?
It's like the muscle weakness side effect that they say abut florinef - that's what happens to me. And ive only taken it two days!
Can someone assist me on this. I would appreciate the help
chriswsongs@gmail.com
Anonymous, you need to start at 1/4 of the .1 mg tablet for 4-5 days (we did a 7 day start), then move to 1/2 tablet for 4-5 days, then 3/4 tablet for 4-5 days before moving to the .1 mg tablet. If you experience a headache, don't increase the dosage until the headache has been absent for at least 3 days. Very powerful steroid!
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