Who is on or has tried Florinef..

Discussion in 'Fibromyalgia Main Forum' started by Wolverine, Dec 3, 2008.

  1. Wolverine

    Wolverine Member

    Anyone on it regularly for POTS/NMH?

    As ive been on Hydrocortisone and still having a hard time, I spoke with my endo and asked for Florinef. I've had such bad postural tachycardia with BP drops on standing alot of the time.

    Here's a couple of examples from the last week:

    Laying: BP 117/80 & Pulse 105
    After 5 mins standing: BP 98/83 & Pulse 160

    Laying: BP 115/74
    Standing: BP 97/82 & Pulse 140

    This is quite frequent which is why i have to lay down all day every day. I drink sea salt in water but still the POTS is happening most of the time. Much less at night though when i generally feel a bit better. My potassium is generally quite low as recent tests indicate.. bottom of the normal range. Florinef can lower potassium aswell so i should probably supplement it.
  2. simonedb

    simonedb Member

    I tried it. My pulse is normally like 70 and it went up to over a 100 on florinef, on a smaller tha normal dose, I couldnt stand the feeling like heart coming out of chest.
    but it works for some.
    i had a positive tilt table test back at the time mid 90s.
    with your pulse already high I dunno if i would do it, i have a low b/p all around but much worse on tilt table test and if upright long time i think it also drops,have the blood volume problem. If you google cheney and sieverling u could find alterna remedies like gookinaid.

    That said a friend of mine an avid biker (bicycle not harley) had cfs of a sort and florinef sorta cured his fatigue plus no wheat and other dietary stuff. he is back to backing 100 miles a day or whatver.
  3. Wolverine

    Wolverine Member

    Interesting.. i've heard it doesn't work for everyone yeah. Strange it doesn't help everyone with NMH as this is supposed to be its direct mode of action.

    Will let you know how it goes. ~C.
  4. deserella

    deserella Member

    I'm on florinef. I take a prescribed Potassium Chloride with it. I notice a slight improvement, but what really improved my POTS symptoms was MIDOdrine. It takes blood from different parts of your body (scalp and hands,ect.) and sends it too your heart. I stopped feeling light headed. Before Midorine I couldn't even walk across the room without blacking out. Really helped me. HOpe you find some answers.
  5. Wolverine

    Wolverine Member

    Anchor: Thanks for that info. Well I'm already on high dose of hydrocortisone, which much more directly effects the HPA than florinef does unfortunately, and im certain mine is totally shut down for the moment. Every dose that wears off i get severe low cortisol symptoms. I'm not sure how much chance ill have of coming off it, i hope to one day but not sure with how bad I am. Adding florinef doesnt have much of a worry for me, because it less effects the HPA than HC which im on, and if it doesn't agree with me or show any more benefit than HC alone, i'll stop after a while, but will still be on HC.

    Deserella: What dose of Florinef are you on? Are you also on HC or Pred? I dont often see people just taking florinef without another cortisone. So you got onto midodrine? Ive heard a few people on this board have used it with success. Can you lay down while on midodrine? Did you reduce your florinef since starting it? How long can you stand up and how far can you walk etc since midodrine? That's been something ive considered trying if florinef doesnt do enough. I too, can barely walk through my house without becoming heavy and weak / rapid pulse etc and find i have to lay down quick. If i get to the letterbox and back im having a good day.

  6. Wolverine

    Wolverine Member

  7. ulala

    ulala New Member

    table test in the mid 90's and can't stand in one place for more than several minutes. I tried florinef but it didn't agree with me.

    It's interesting that Simon mentioned a friend being helped by stopping wheat. Not eating wheat makes a huge difference for me with the POTS. I was having a lot of ankle swelling and the doctors, of course, didn't know what was causing it and they were giving me water pills, which makes the problem worse. When I cut out wheat and dairy my ankle swelling completely goes away and I can stand for much longer. When you have POTS the blood doesn't get pumped back up from the legs and tens to pool in the legs. When you stand in one place for a long time the blood pools in the legs more and makes you feel like you're going to pass. out. I really think that wheat and dairy contribute to this, at least for me.

    Another thing that helps is when I force myself to drink 3 - 8 oz. glasses of water in the morning before eating or drinking anything else.

    Hope this helps. Please try cutting wheat, grains, gluten, dairy and see if you notice a change. It's worth it.

    Best wishes!

    Simon-if you read this would you post more about your friends diet that helped with the CFS. I'm really interested in diet helping with this. Thanks!
    [This Message was Edited on 12/06/2008]
  8. TeaBisqit

    TeaBisqit Member

    She wouldn't give it to me because she said it ruins the heart and kidneys. She didn't want me to get more organ damage.

    Licorice helped me. A couple of months of it and it helped. But it rips the potassium out of you and you get horrible muscle cramps. I've laid off it for now.

    Celtic Grey Salt from the Salt and Grain Society got rid of the NMH for six months on me. But I had to stop it because the salt wrecks your stomach and makes the GERD/Acid Reflux a million times worse. The Celtic Salt is different from regular sea salt. It has a million minerals and stuff in it. There is something in there that works. I bought the ground stuff a few months ago and have been using it on my food and I do notice a difference. I have less days of NMH/POTS. I still get it, but not to the extent I was getting it.
  9. Wolverine

    Wolverine Member

    Hi there. I see, it seems alot of people dont agree with Florinef. I have taken yest and today off it because i think it was making my biliary colic worse. I will try again 2morrow and see how it goes. I've actually been not too bad with the POTS some days.. it seems to depend on how i dose my hydrocortisone. If i dose it well and wake up feeling ok without the HC really wearing off and me having to feel horrible and shaky before the next dose kicks in, then i get less pots symptoms. Heh, yes my diet is very restricted and i've been off wheat and gluten, also most dairy for many years now. Since about 2001. Im not strict enough and probably eat a few products that contain traces of gluten etc, but i intend to go really strict with diet when i work out EXACTLY what is right for me. I have been consulting with an excellent nutritionist via phone, he is great and has developed some strategies for CFS including an elimination diet he thinks everyone with CFS should try at some stage. Check the diet out here:


    About half way down that page, it says "Elimination Diet Protocol" then under that says 'click here' - click on it to bring up the PDF diet plan in detail. Its very restricted but cuts out most common food reactants, and many people find great relief from it for all sorts of probs.

    Good idea to drink that much before eating in the morning, and with some celtic sea salt in it too.

    TeaBisqit: Eek that doesn't sound good! :S I'm not sure it 'ruins them' as it acts similarly to Aldosterone which every human body makes. I know a lady who is about 67 or so, and has been on florinef at 2 tablets a day (0.2mg) since 1975 since getting almost both adrenals completley removed. She has alot of health problems, but to be at that age and have been on florinef that long, I don't think it's as damaging as your doc is saying.

    Licorice works very similarly to florinef. I was also getting low potassium symptoms on it like alot of ectopic beats and so on. You can take it and just take extra potassium. Most people on florinef have to take supplemental potassium for this reason also. Im slightly allergic to licorice as i am to many other herbs, so ive also laid off it since being on hydrocortisone.

    Celtic sea salt is fantastic, i use it most of the day in water. It does make the system a bit too salty tho, the gut etc. I dont take as much as some, just 1/4 tsp or so in 500ml water twice a day. Sometimes if i feel really low in BP etc i put 1tsp in 1 litre and drink that fairly fast.

    Quite a few people even off this board, on other groups im in for adrenals and addisons disease have said that midodrine can work better for POTS / NMH than florinef does. Im keen to try it! Will give florinef a bit more of a trial tho first.


  10. Wolverine

    Wolverine Member