1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
Discuss the article on the Forums.

Florinef Questions

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Hugocfs, Oct 23, 2012.

  1. Hugocfs

    Hugocfs Senior Member

    Messages:
    107
    Likes:
    75
    U.S.A.
    I was just put on florinef for orthostatic intolerance (elevated heart rate upon standing, generally low blood pressure, periodic shortness of breath, and occasional shakiness). I have two questions. First, how long should it take until I start noticing a difference in these symptoms? I have been on the medicine for 5 days with nothing noticable yet. Second, has florinef helped any one with the exercise intolerance (which is by far my biggest complaint with crap disease)? Any feedback would be helpful with the recognition that different people will have had different reactions to this medicine. Thanks
     
  2. Rooney

    Rooney

    Messages:
    75
    Likes:
    19
    SE USA
    You are tolerating it which is a great start. I'd take your blood pressure which should be lower than in the doc's office. Keep a diary. If you can stand more, you can do more. Exercise will still be a challenge, I think.
     
  3. mezombie

    mezombie Senior Member

    Messages:
    324
    Likes:
    20
    East Coast city, USA
    Florinef has helped me. It took a while to take effect, so be patient. I would give it at least a month's try. While this drug helps keep people with OI vertical, it does not claim to help with exercise intolerance. I'm afraid this key symptom is much more difficult to address. Pacing (alternating activity with rest) is the only thing I've found that helps a bit with that.
     
  4. Ema

    Ema Senior Member

    Messages:
    3,492
    Likes:
    3,967
    Midwest USA
    How much are you taking?

    It does generally take about two weeks to feel the full effect because it is a long acting steroid. It is also generally recommended to start low and slow and build up to whatever the final dose may be.

    It's also important to monitor BP (diastolic ie bottom number corresponds best to aldosterone/Florinef) and electrolytes while taking Florinef. My doctor had me get labs every 2 weeks until my dosage was settled and now I go every month.

    Labs are also important because Florinef is a potassium wasting drug so many people find that their potassium level drops too low while taking it and they need to supplement with slow release potassium. It isn't safe though to supplement potassium without monitoring the level though as too much (along with too little) can be fatal.

    Ema
     
    WillowJ and ahimsa like this.
  5. Hugocfs

    Hugocfs Senior Member

    Messages:
    107
    Likes:
    75
    U.S.A.
    The doctor put me on .1 mg with no ramp up. After 5 days, I am done with it. Yesterday I developed severe insomnia and harder than normal stool which gave me a hemorrhoid. The cure was worse than the problem it was suppose to solve. Thanks to all for responding anyway. Ugh! Just hoping now that Dr. Lerner is right when he says that a lot of these ancillary problems resolve over time with the antiviral treatment. (Btw, I am on famvir and inosine.)
     
  6. Ema

    Ema Senior Member

    Messages:
    3,492
    Likes:
    3,967
    Midwest USA
    If OI is really an issue for you, I would not give up on Florinef. I would, however, start at 1/4 tablet and work up with increases every 2 weeks while getting regular labs to monitor electrolytes.

    Starting right on a full tab will totally change the fluid balance in your body which can cause symptoms (as you've noticed). Doing it gradually can make all the difference in the world.
     
    ahimsa likes this.
  7. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,198
    Sth Australia
    My doctor prescribes Florinef very much like Emas doctor does for his POTS patients.. starts off with only 1/4 tablet .. after 2-3 weeks then blood test.. then increases to 1/2 a tablet .. then blood test again after a month.. and only then did he increase to .1mg and then he blood tested me again after a couple of months (and is now happy with how things going so he hasnt mentioned any more blood testing of my potassium levels etc. Its best to go slow.

    Doctors who commonly use this drug for their patients usually tend to build up the dose, not do what your doctor did. I wonder how you would of gone if you hadnt just been suddenly put on a dose in which many of us our doctors dont put us on for at least a month of building up the dosage first. You may want to consider trialing this pill in the way its usually trialed (starting with 1/4 pill for a couple of weeks etc ..find out if whatever amount it is which is tollerable to you can help).

    In my case I noticed no effects with the 1/4 pill... and then slight affects at 1/2 pill... but when I then went to the .1mg dose, I then got a doubled increase in my activity level which was noticable to me almost right away (within 2 days I was noticing more effect from the higher dose). In my case I could tell how much better the dose increase was going to make me within days... obvious effect on my body.

    As far as exercise intollerence goes, Florinef thou it has doubled what I can do (I can do much more housework).. my ability to do aerobic kind of exercise is the same.

    My doctor also warned me that the Florinef can cause insomina if taken too late in the day. Hence he told me to take it first thing in the morning. (and by doing that I fortunately havent had any issues with insomina with it). If one wants this to work you also need a good salt intake too and most need to increase that. Usually medical compression stockings are also worn too .. the Florinef helps by increasing blood volume and the compression stockings help make sure the blood isnt pooling in the legs. (to treat OI and low blood volume issues properly there is a combination of things which often are essential if one wants best benefits.. it isnt a case of just take Florinef).
     
    WillowJ and ahimsa like this.
  8. ahimsa

    ahimsa Senior Member

    Messages:
    1,079
    Likes:
    989
    Oregon, USA
    Ditto to what Ema and taniaaust1 posted about starting with a small dose of Florinef (fludrocortisone) and then ramping up slowly. I started with a 1/4 tablet back when I first started that drug. And I also took extra salt (salt tablets or extra salt on my food) and drank extra water (2-3 liters per day). Both salt and water should be ramped up slowly, too, along with the drug. Of course, I wouldn't blame you if you decided not to start over.

    I've been on Florinef for many years (since 1995). It helped me the most during the first 4-5 years. Then it seemed to wear off slowly and did not help me as much. In 2003, I added midodrine (a vasoconstrictor) and that helped. I also take a time released prescription potassium (some generic version of Klor-con, 10 meq tablet).

    I do not find that either drug helps much with exercise intolerance. They do help with allowing me to be upright longer.

    The biggest surprise was that midodrine helped my sleep so much. This was strange since the drug is short lasting (about 4 hours) and has worn off long before I go to bed. Since midodrine can cause BP to go too high at night it must be taken so that it wears off before bedtime. The explanation for better sleep (according to both my doctors) seems to be that when I minimize symptoms caused by my OI (my diagnosis is Neurally Mediated Hypotension) then my sleep is improved.

    It's counter intuitive since, for most people, doing more during the day means they are more tired and they sleep better. For me, the more I rest during the day the better I sleep. It's infuriating to someone who wants to be doing stuff and not just sitting still. But I don't want to digress too much into midodrine since this is a thread about florinef.

    My current drug combo helps me but I can still crash if I do "too much." This means not enough pacing of my basic activities, e.g., too much time in the kitchen trying to cook something (even though I have chairs/stools and sit down as much as possible) or sitting upright at the computer too long. It does not mean I can take a 30 minute walk or lift weights or do any type of actual "exercise" without payback.

    Adjusting meds is a very complicated thing. Each of us seems to have a different set of what works vs. what doesn't work, serious vs. minor side effects, and so on. It really sucks to have to deal with such a complex illness! But I have learned that trial and error, and trusting my own gut, is what works best.

    Hugocfs, I hope you find something that works for you. Sending you some :hug: HUGS :hug: !!!
     
    taniaaust1 and WillowJ like this.
  9. Hugocfs

    Hugocfs Senior Member

    Messages:
    107
    Likes:
    75
    U.S.A.
    I decided I am going to pass on the florinef. I manage the oi well enough with drinking lots of homemade electrolyte solution and compression stockings. I always seem to be extra sensitive to medications and don't really have a doctor manage the medication as suggested in this thread. My big problem is the exercise intolerance, and it doesn't sound like florinef is going to help much at all, if any. Thanks again for all of the support.
     
  10. taniaaust1

    taniaaust1

    Messages:
    8,227
    Likes:
    5,198
    Sth Australia
    I dont blame you for being put off of the Florinef after your experience (Im easily put off of a drug too once Ive had a bad experience with it). All the best.

    I hope this thread serves as a good warning to others on how to be trialing this medication.
     
  11. erist

    erist

    Messages:
    99
    Likes:
    34
    Twin Cities
    I am starting Florinef soon. Salt tablets just don't seem to be cutting it anymore, though they are still hugely helpful, and it is night and day when I am consistently drinking 4+ liters of water a day plus salt tablets than when I forget for a few days. I will keep this thread in mind and go s l o w
     
    ahimsa likes this.

See more popular forum discussions.

Share This Page