Tuesday, 10 September 2013

Florinef, I think I love you.

(Note: As always I am not offering medical advice of any sort, and not recommending any treatments.  A brain fogged woman sitting on her couch in her flannelette pjs, taping away on a keyboard, whilst binging on macarons and salty chips, is not a substitute for professional medical advice. All medical decisions, including treatment options, should be discussed with your primary treating physician.)



I've been meaning to write this post for ages. Like many plans, appointments, ability to spell my name, it all went into the sieve that is my brain, and fell straight out again. Memory, I had one of those once. I think. Maybe. What was I doing? 

I keep repeating the same tips on various forums. You'd think given that each time I write the same info I think "I should write a blog post about this", it would spark me into action. But no. Damn those bright shiny objects! 

So here it is, finally. My tips for starting/considering Florinef. These are based on my personal experience over the last 6 years, and as stated above always check with your doctor. I have been taking Florinef since 2007. It's my longest standing medication, and the one that was the game-changer in my treatment. 

Florinef (aka fludrocortisone acetate). Ah, you sexy little white tablet, you. You are my favourite pharmaceutical of them all. You let me almost have a life, rather than being stuck in bed or frequenting the carpeting or linoleum of various clothing stores. For that I'll always love you. 

Now, I'm not advocating that all Dysautonomia patients run out and try Florinef. Nor am I being paid in cash, or macarons, by it's manufacturer, Bristol-Meyers Squibb Company.  Any medication should only be taking in consultation with your doctor. The reality with Dysautonomia is that not all medications will work for all patients. It depends on your underlying cause. It depends on your tolerance levels and side-effects. It depends on your other medications. It depends on your other disorders. Some days, I swear it depends on whether Saturn is in retrograde, or if the wind is blowing from the North-East. Often the only way to know if a medication may or may not work is to take the plunge and see what happens. Even if you see an improvement, trying to find the right dose can also be problematic.

But back to the medication in question. 

The most common concern seems to be that Florinef is a steroid, and we are all rightly concerned about the long-term side-effects of continuous steroid use. Florinef is a steroid, but it is not like it's traditional cousins. No shrinking testicles for the guys, and no five o'clock shadow for those of us of the fairer sex. It will not lead to a generation of Dysautonomia patients sporting the physique of a 1980's Eastern block female Olympic athlete. It is what is known as a mineral corticosteroid. Corticosteroids are a combination of corticosteroid hormones, cortisol and aldesterone that are produced by the adrenal glands. Amongst all their varied roles in the body, they help to regulate the water/salt balance, something of importance for many Dysautonomia patients.

At it's most basic Florinef works by helping the body hold onto salt, which in turn holds more water in the body. These two processes combines to increase blood pressure and in turn reduce the reflexive reaction of our bodies to deal with the low blood pressure, tachycardia. Clear as mud, right? If you are hypovolemic, which a large percentage of patients are, or your aldesterone levels are low, it will help to increase your blood volume. 

So what are my main tips for starting and taking this medication?

  • Start low: start too high and you are more likely to encounter side-effects. Titrating (going up incrementally) your dose over a few weeks can make it far easier to tolerate. For example, if your doctor prescribes .1mg, start at 1/4 or 1/2, tablet for two weeks. At the end of the two weeks, and if tolerated, add an additional 1/4 or 1/2 tablet. Repeat until your prescribed dose is reached. I have seen many patients prescribed doses such as .2mg who start on the full dose and discontinue within the first few days as the side-effects are to severe. The simple trick of titrating your dose can save a lot of pain and mean that you can take a potentially helpful medication.
  • Side-effects length: the worst of the side-effects tend to last about two weeks. If you are titrating your dose be aware that you need to allow about two weeks for your body to accommodate each change. For most long-term users these side-effects become quite minimal over time.
  • Side-effect types: These are many and varied. Some of the most common are: gastric distress (nausea, cramps, diarrhoea), increase in headaches, weight gain/increased appetite, fluid retention, thinning/dry skin, easy bruising, visual changes, and decrease in your immune system. I found that I had pain in my joints, particularly my hands, with the increase in fluid. A small percentage of patients will experience psychiatric symptoms when taking Florinef. If you or your family, notice a change in your mood or suicidal ideation contact your doctor and seek medical help immediately. Hypokalemia (low potassium) is a particularly serious side-effect and I'll discuss it in more detail further down.
  • Break dose in two: I haven't had this issue, but I know many patients report a slump in the afternoon as the effects of Florinef wear off and blood pressure starts to crash again. It is possible to break the dose in two to maintain a more even blood concentration throughout the day. Warning: Florinef can cause or worsen insomnia. If taken later in the day it may impact on your sleeping.
  • Storage: Florinef should be stored in the fridge. Update: have just found out there are some brands (Global Pharmaceuticals, Division of Impax Laboratories, Inc.) who make a form of Florinef that can be stored at room temperature. Double check with your pharmacy if that is an option. Much easier if you could get a room temp version and keep all your medications in one place. Thanks Allisone :)
  • Eat before taking: one of the most common side-effects, even after long-term use is gastric distress, eg cramps, nausea or diarrhoea. If you eat something small, even a slice of toast it lines the stomach and minimises the gastric problems. 
  • Hypokalemia/Low Potassium: this is an important issue for all patients taking Florinef. Florinef depletes the body's supply of potassium. Unchecked this can lead to hypokalemia, which if untreated can lead to heart attack. I am amazed at the number of patients prescribed Florinef who are not also given a prescription for a potassium supplement eg Slow K or Dura K (note most over the counter potassium supplements do not have the needed concentrations), or told to eat a high potassium diet. Many patients have ended up in the ER thanks to hypokalemia, and although it can be treated with IV potassium, this is an unpleasant experience (it can feel like you veins are burning). Maintaining potassium levels (amongst others) can be difficult for many Dysautonomia patients irrespective of Florinef, so it is important to keep an eye on your levels. A blood test before beginning and one week post-starting can be useful to see how your body reacts. After that, 3 monthly bloods are generally adequate to monitor your levels. (Some also recommend that sodium levels are also checked, but both tests are usually included in a basic blood panel.) Drops in potassium can occur rapidly as I found out. Having run out of my Slow K and thinking 1 day wouldn't matter I started to have quite severe heart palpitations and weakness. An emergency Slow K run to my local chemist and these symptoms disappeared shortly after taking 2 tablets. 
  • Water and salt: Florinef's main mechanism is to help the body hold onto salt which in turn holds more water in the body. It is important to maintain a high salt and water/fluid intake for the medication to work. Without it Florinef will not work properly.
  • Blood pressure: monitor your blood pressure, especially when starting. Florinef is used to raise blood pressure in those with hypovolemia. It can be a fine line between a normal blood pressure and high blood pressure. It can also take time to find the balance between dosage and healthy blood pressure. Due to changes in your underlying disorder or your body's tolerance to the medication you may need to either reduce or increase your dosage over time. If you are starting to get more headaches or you have a history of conditions such as benign intercranial hypertension, check you blood pressure to ensure you are not developing hypertension. 
  • Osteoporosis/Osteopenia: Long-term users should get a DEXA scan to check their bone density as this is a risk factor for some. Especially if you are also less mobile, not outside as much or have a family history. It's no where near the same level of concern as traditional steroids, but like everything just keep it in the back of your mind.  
  • Moisturise: Florinef can make your skin very dry, especially if you have been on it for a long time. Invest in a good quality moisturiser, eg one with a high percentage of shea butter and slather it on. I have noticed that as a result of drying out my skin is also more sensitive to a range of products.
  • Do NOT stop taking it suddenly: this can cause a rebounding of symptoms. As was recommended for starting Florinef, titrate down especially if you are on a higher dose. For example: I recently developed supine hypertension and my cardiologist recommended a decease in my Florinef to hopefully ameliorate the change. My first attempt at a decrease by 1/2 tablet ended with rebound migraines and more frequent blood pressure drops. I reworked my titration rate and both have settled for the most part, 2 months later.
With all of these tips ALWAYS check with your doctor before implementing. 

As with all medications it is a question not only of if it works, but the risk/side-effect/benefit issue that must be balanced. This will be different for each of us. Side-effects I can tolerate may be unbearable for others and efficacy will differ amongst patients (eg Midodrine made me feel like I was going to either stroke out or have a heart attack, and yet for others it is their most useful medication.) As such, to start taking, or continue with, Florinef will be a very personal decision.

There are no doubt other tips that I will think of after I push, Publish. I will update if I do. But until then I hope these tips are helpful.

Cheers
Michelle :)

There is a lot of information about Florinef on the Internet

A simple guide can be found
here.
A more comprehensive explanation of the pharmacotherpy behind Florinef can be found here.

28 comments:

  1. Wonderful to read posts from someone who is experiencing POTS and can write so well! Your blogs are so useful Michelle :-) Thank you so much for putting your poor brainfoggy mind through it in order to give us this information. I'm a writer too and I know how hard it is to write something this long with coherence when you have POTS. Michelle, I salute you! Thank you so much xxx I'm going to print this, and the articles above and take them to my doctor.
    ....Now where are my macaroons?!! ;-)

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    1. Glad it could help Catharine. We all seem to get different amounts of information when medications are prescribed. My cardio is pretty good at explaining mine, but I know with Florinef a lot of it, I have learnt over the past 6 years. The potassium issue really angers me as I know so many patients who've ended up in hospital from hypokalemia and it's something that can be relatively simply avoided.

      I really need to get onto those macarons. I need to find a sponsor! :)

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  2. as scary as it sounds, I kinda wish it did "lead to a generation of Dysautonomia patients sporting the physique of a 1980's Eastern block female Olympic athlete". That would be preferable to my tall but runty musculature I currently sport.

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    1. But think of all the waxing we'd need ;)

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    2. ha! yeah, I'm willing to pay for all the waxing in the world to be tough and able to weild a mattock in the garden again, oh to be 19.

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    3. True. I'd be pretty happy to do that too, or chop back the bushes that are mocking me each time I look out the back window, or you know, squeeze a lemon ;)

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  3. ...maybe I should have removed the "generation of"...I don't wish that on anyone else,

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  4. good run down of tips michelle. I was told also to have a dexa scan due to the effect on bones. found out osteopenia on my left hip. seeing an endocrinologist now for calcium and vit.d sups and follow up appts too.

    I too wouldn't be without the fludro, have been taking it since 09, along with midodrine.

    hope your doing ok. take care. x

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    1. Oh I forgot that Em, even though I had my first scan last year! I'll have to add that. Damn, brain fog. Sorry you're already dealing with osteopenia, I hope they can arrest it for you. xx

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  5. This medicine changed my whole life around. I went from getting sick every single day (throwing up, passing out, not being able to function, etc.) to being able to get along as normally as I can. I literally owe my life to the little pill.

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    1. That's brilliant, Emily! Amazing how one medication can do so much. Really happy for you xx

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  6. I have only been taking this medication just over a week and I can already feel the difference! I put off going on it for a year because I was fearful of putting even more weight on.. (Over the last year with POTS I've put on 30kg! :()But hopefully with this great pill I can start to lose some weight, because I can actually stand for longer than 5 minutes!! Whooo.. I'm glad you mentioned the potassium issues- it amazes me that doctors never let you know about these things! Thanks xx

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    1. So glad it's helping already Letisha. Standing for more than 5mins is definitely something to be celebrated.:)

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  7. If you are thinking about laser tattoo removal gurgaon has a center that can work with you.

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  8. If I may ask, when you were "diagnosed" did they use the term Dysautonomia? I was diagnosed with Orthostatic Hypotension and have been on Florinef for YEARS (absolute miracle drug!). I live without symptoms so long as I'm on my meds twice a day (unless I'm sick... then I have some relapses). A neurologist diagnosed me after ordering a tilt table test. My primary care physician then put me on florinef and nothing was ever said about it again. That was 8 years ago and I was 19 at the time... so I didn't think to ask questions. Now I'm being forced to stop taking it immediately (because I'm pregnant) and that's causing me to search for answers. You don't get many answers when you google "Orthostatic Hypotension".. only more questions! I've recently discovered the term Dysautonomia but am not 100% certain this is what is causing my orthostatic hypotension as it is really my only symptom. Thanks for any help you may be able to give me!

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    1. I should add that I do have, mental fogginess, Orthostatic Intolerance, general dizziness/light headedness, and fatigue REGULARLY if I am off my florinef. THANKS!

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    2. Hi Megrichardson87. First of all, congratulations! I can't imagine having to go off Florinef so really feel for you. My diagnosis has changed over time but I've always had autonomic symptoms although they are more numerous and more prominent now. I began with a diagnosis of Neurocardiogenic Syncope, moved to Orthostatic Intolerance and after a few others am now stuck with severe neurodegenerative autonomic disorder or severe dysautonomia (seems to change all the time as to wording but is essentially the same thing). OH can be classified as an autonomic issue and therefore a form of Dysautonomia. For some they will remain as only OH and for others more symptoms will appear over time. Florinef tends to work if we are hypovolemic as it bumps up blood volume and that is a pretty common trait in Dysautonomias like POTS, NCS, OH and OI. The few times I've either forgotten Florinef or stopped for testing, I have all the symptoms you describe. A lot of it does come down to determining your cause (which can be really difficult). I'm guessing from your reference to PCP you're in the US? It may be worthwhile checking out a couple of sites like Dysautonomia International or the Dysautonomia Information Network who may be able to point you in the direction of doctors in your area who may be able to help you out with Florinef alternatives during pregnancy and perhaps further testing if you are interested in learning more. There are also doctors around who have knowledge of dysautonomias and pregnancy. Also are you wearing compression stockings and continuing your fluid and salt intake? Those would at least provide some relief from symptoms. Sorry that's a bit all over the place, not having a great day. Hope it makes sense and helps.

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  9. I'm been dx with Addison disease and prescription for flourinef. I'm scared to take it. HELP

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    1. Hi Cynthia. Florinef is commonly prescribed for Addison's disease. Your doctor would be best placed to provide you with information about Florinef's role in managing Addisons as I don't have that particular disorder and only have limited knowledge about it. It's important to remember that many people do take it with success and little in the way of side-effects. All drugs have risks attached that we must individually assess with our doctors but for many it is agae changer. I hope all goes well for you.

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  10. Tried to post a comment before but not sure if I lost it or it has to be moderated first. Please disregard if the latter.

    I have been on florinef for nearly 2 months. Florinef is working for my POTS but I am experiencing unbearable possible side-effects.

    My problem is my skin is suddenly dry and I developed a heap of under-eye wrinkles within the period of a week. This was about 2 weeks ago. Part of it is it has made my usually somewhat hollow under eyes so puffy upon waking that I have developed a deep crease where the puffiness starts. Today I woke up and my whole face has fine wrinkles when I smile. I have never had a wrinkle in my life. I'm 29, non drinker and non smoker, don't wear makeup, always wear sunscreen, never go in the sun. Could this be the Florinef? My doctor said skin changes would only occur after a year but this has happened so rapidly. When did your skin start becoming dry from it? I can't see a dermatologist for another month and I'm not sure I can wait that long.

    I am also severely depressed and suicidal. Trying to not think about my skin takes up all my day. I tried florinef for a month earlier this year and had to stop because I became severely depressed and suicidal. My doctor doesn't believe Florinef could cause depression but side-effects lists list it and I've found other people online who have experienced it. I don't know what to do. Has this happened to anyone else?

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    1. Hi Florinef woes. I am so sorry that you are having such a tough time at the moment. Mood disturbance can occur with Florinef and I know people who have ended up admitted to hospital because of this. If you are depressed and suicidal you need to seek help. If your treating doctor is unable to help please head to your local ED or call one of the many helplines around as this is a serious issue and needs to be addressed immediately. Please don't wait.

      With your skin I am unsure if Florinef can cause the effect so quickly, my issues became noticeable after a year or so of taking the medication.

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  11. Thank you for this info Michelle! I have just started florinef after trying midodrine and it causing severe insomnia, so I'm hoping this doesn't do the same!!
    It was started after my pots doc wrote to my GP to start me on it, I had read about low potassium levels but I forgot to tell me GP. I'll have to get a supplement or it prescribed.
    The pots doc suggested I take 0.05mg am and then pm. My tablet comes in 0.1mg form and have tried halfing it with a pill cutter blade must most of it crumbles! Do you have any tips for this? Thanks!

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    1. Sometimes the different manufacturer brands can be more crumbly but I'm not sure which is better. Mine has a line down the middle which makes it fairly easy to break. Maybe chat with your pharmacist and see if they can suggest another brand? But other than that I'm not sure. I hope it helps you and you have minimal insomnia and side-effects :)

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  12. Hi, I was diagnosed POTs recently and started florinef in December. I increased approx 2 weeks ago to two tablets. I cannot really tell if this medication is significantly helping. Last night when trying to sleep, l had rapid heartbeat sort of a doubling of my heartrate for a short burst, followed by normal, followed by fast etc etc for a while until either l feel asleep or it stopped. Is this typical? I thought irregular heartbeat would only happen apon standing. JANETTE

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    1. That sounds like the symptoms I have with hypokalemia (low potassium) - which is definitely a danger with Florinef. If your doctor isn't checking your potassium level, they should be. If you're going to take Florinef, you'll probably have to be very intentional about getting a lot more potassium in your diet, intentionally. If I don't do that, I end up with hypokalemia all the time.

      I also have a prescription for KCl, and it has saved me from cardiac arrest too often for comfort. :(

      Sorry you're dealing with side effects...hope you can figure out a way to make the Florinef your friend, and avoid the down-sides!

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  13. My doctor just put me on Florinef for some variation of dysautonomia, and so far (all of the one week I've been on it, lol) I've felt pretty terrible. I have been told by multiple people and read that if I can get over the two week hump, it will get a lot better. I've been wondering how 'bad' the side effects should be before phoning my doctor. I've mostly heard to just tough it out, but I have gotten this from many seasoned Florinef-ers, not to mention there's been a bit of an age gap between the people I've talked and myself (I'll be sixteen in August). This article/post was really comprehensive and helpful--so thank you for that!

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    1. Did it get better after 2 weeks Sarina? My son has just started FLorinef for POTS and he feels awful. He is 13.

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx