I often hear that someone who desperately needs to increase their blood volume has tried Florinef (fludrocortisone acetate) but been unable to stay on it because of intolerable side effects. I think in many cases, the intolerable side effects are the result of how the medication is prescribed and taken -and not of the medication itself. Florinef has been helpful to so many people who have Dysautonomia and has the potential to be helpful to many more, so it makes me sad and frustrated that anyone would be denied the benefit of this medication because of the way it is administered. Certainly, in some cases, it is the Florinef itself to which a patient reacts badly, and this will not be relevant to people for whom that is the case. But, before deciding that Florinef doesn't work for you, I urge you to consider whether the way it was prescribed for you might be the cause of the side effects. If so, taking it in a different way may alleviate the side effects and allow you to get the full benefit of Florinef. Our healthcare system has been set up to deal with acute, emergency situations, not chronic conditions. In acute, emergency situations, the goal is to administer the relevant medication as quickly as possible to save lives. While that mindset is understandable in that context, it is less useful in the context of chronic illness. Yet that mindset carries over from acute care to chronic care and results in health care providers wanting to get a patient on a therapeutic dose of a medication as quickly as possible. While the goal of lessening a patient's suffering quickly is laudable, having patients start some medications at doses that are too high, and increasing doses too quickly, can end up causing the patient more suffering. When first taking Florinef, many people experience these side effects: pressure headaches, edema (swelling), and insomnia. In my non-professional opinion, these side effects could be minimized or completely avoided if doctors were to instruct patients to start at lower doses. The standard dose of Florinef prescribed for people with hypotenstion (low blood pressure) due to hypovolemia (low blood volume) is .2mg (or 200mcg) per day. Most doctors recommend starting with half that dose or all of it at once. I think this is a mistake. I think those doses are too high for most Dysautonomia patients to tolerate at first. Many of us are sensitive to medications, or respond to medications in unexpected ways. Knowing from my own experience with medications that I am more sensitive to some medications than my doctors expect, I decided to take a much lower dose, and to increase the dose slowly, taking wisdom from the nursing adage “start low, go slow”. (I had my doctor's approval in doing this, though he did not think it was necessary. He knows me well enough now to know that -for me, at least- it is.) Instead of taking .1mg for a few days, then .2mg as my doctor prescribed, I started with 1/8 of the full dose, .025mg, and increased by .025mg every week. It took 7 weeks to reach the prescribed therapeutic dose of .2mg per day, but I had almost no side effects during this period, and have had none in the years since I worked up to .2mg per day. The only time I experienced even the mildest side effects was when I thought I would try increasing my dose from .075mg (3/4 of a tablet) to .1mg (a full tablet) after only 3 days instead of my usual 7. That's when I got a taste of the dreaded pressure headache I'd heard so much about in relation to Florinef. It was not fun. It lasted 2-3 days, then subsided. When I returned to my schedule of increasing only every 7 days, I had no more pressure headaches. I never had any trouble with insomnia (beyond my already-present sleep problems), and the only weight I gained was about 2 pounds of water weight -but not edema- over the first month or so after reaching the full dose of .2 mg. Since gaining water weight in the form of increased blood volume is what we want from Florinef, I don't consider that a side effect. I also had some problems taking the whole dose at once. Florinef is usually prescribed to be taken, in full, in the mornings. Doing so caused my blood pressure to get a little too high during the day, and go lower at night than it had before starting the Florinef. Instead of taking .2mg in the morning, I take .1mg in the morning, and the other .1mg in the evening -about 12 hours apart. I now have a steady amount of Florinef in my system, which helps my blood pressure stay as stable as it can. I started to notice positive effects even at .025mg, and the positive effects kept increasing as the dose increased. Florinef (and the sodium and fluid loading that are necessary for Florinef to work) is what allowed me to lift my head without risking syncope. Then, it allowed me to sit without passing out, and eventually, to get out of bed. I'm still couch bound and homebound and quite ill, but Florinef has helped me more than any other medication I've tried for Dysautonomia. Given how much it has helped me, I want to make sure that others who might benefit from Florinef know that at least some of the side effects can be lessened or prevented by starting with a low dose and increasing the dose slowly. Most doctors won't even consider this when prescribing Florinef. If you are thinking about trying Florinef, or any medication, and are concerned about side effects, remember “start low, go slow”. Talk with your doctor about starting with a lower dose to make sure that it is an acceptable thing to try in your situation. Don't be surprised if your doctor says it is unnecessary. Explain that you'd like to try it anyway and just want to know if it is harmful. (Always check with your doctor or pharmacist about making changes to your medication regimen.) It will take longer to reach the prescribed dose and see the full benefits of the medication, but if starting low and going slow means you can stay on the medication so you CAN experience the benefits, it's worth it. For more patient experiences with Flornef, please check out these excellent pieces by sister Dysautonomiacs: http://bobisdysautonomia.blogspot.com.au/2013/09/florinef-i-think-i-love-you http://potsgrrl.blogspot.com/2011/08/florinef-oh-florinef-how-i-love-thee.html Let me stress that none of this is meant to replace proper medical advice. Discuss all medication-related concerns with your healthcare provider(s).