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Can florinef cause emotional swings? depression, anxiety.. im in hell at times

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by jack blogs, May 20, 2013.

  1. jack blogs

    jack blogs

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    After 8 weeks of being on Florinef w/ potassium I started to feel less dizzy and started to have a desire go on walks. The down side is, after being on florinef for 8 weeks, I am having periods of extreme depression and horrific anxiety, so bad i cant eat at times. None of this happened untill the 8 week mark where anxiety hit me so bad I was crying (for no reason) yet underneath i felt a lot of energy and wanted to go for a walk.I wake up after 5-8 hours of sleep with decent energy (not like me, used to need 9-10 and have to stay in bed a bit after wake) but unbearable anxiety. The mental effects seem to come in waves, wake up in hell in the morning with the bad mental state and stomach wanting to throw up bile but the second half of the day is somewhat better and I always go to bed in a better mood without the anxiety and depression. No events happening in my life are bringing on these dark feelings, they seem to come out of nowhere and make very little sense, thats why i think its a side effect of something.. a shame because this drug clearly works for me in the way of curing the POTS symptoms - I have low aldosterone.

    The only other thing I can think this is would be is withdrawal from gluten.
    I also take 6mg of medrol which has helped greatly with my low cortisol.

    I know this post is all over the place but I feel like im losing my mind at times, its horrific, i am crying a lot and my family are getting seriously worried. Ive been through so much in my life with undiagnosed Congenital Adrenal Hyerplasia yet never once experienced depression or the feeling of being trapped while i had so many hormones out of whack, thats why i really doubt this is coming from within.
  2. adreno

    adreno 3% neanderthal

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    Yes, these are known side effects. Maybe taking potassium could lessen them. When my potassium runs low, I get extremely depressed and anxious. As you know, florinef wastes potassium.
    ahimsa and jack blogs like this.
  3. jack blogs

    jack blogs

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    Thank you for such a quick reply adreno.

    The first time the sides happened it did coincide with adding in a tsp of celtic sea salt (near 2000mg sodium) to my regimen 3-4 days before - thus lowering potassium even more id imagine (was taking poor amounts of potassium at this time, as I didnt know about its importance). I dropped the salt completely and the sides went away within the week, getting less everyday. Awkwardly I stopped eating gluten at the same time I added in the salt and then started to eat it again near enough when the sides were lowered, making me question if i was withdrawing.

    10 days later after the sides went away I added back in the salt (and stopped gluten again) but this time with 4-6x 600mg of Span-K (generic) potassium that I had started 4-5 days before hand, it happened again but this time lasted 2 weeks!, symptoms of extreme over emotional-ness, anxiety and depression. It got less and less every couple of days and feeling a little less sick and anxious when i woke up. My appetite came back on the 9th day so i started taking the span-k again (was told to not take this without a meal, so it made things tricky seeing as i cant eat when this extreme anxiety hits me)


    After I was feeling like my myself mentally and my old appetite was back and i was still taking 3600mg of potassium in pills ontop of my food I added in 25 mcg of T3 as advised by a dr (im hypo) and then 5 days later I was out with my friends feeling my usual self the sides hit me again out of nowhere and the process starts again and here I am wondering wtf is going on. If T3 holds sodium or wastes potassium I guess that could be explainable.


    The trouble is that when this happens i simply cannot eat normal amount of food because of the anxiety and feelings of sickness so i dont get a lot of potassium intake - so im thinking if it was low potassium causing the mental changes perhaps I would have never had relief seeing as im hardly eating, wouldnt I have just got worse without any breaks inbetween? i still continue to take my regular cortisol and florinef while these episodes have been going on.


    When these periods of madness have occured i am pacing around the house for a good 5-6 hours on some days, really do feel like im losing my mind when it happens, could low potassium do that? I guess that could be just how i personally react to the depression and anxiety rather than a direct symptom.


    Its such a puzzle.
  4. Pam123

    Pam123

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    YES! Florinef caused such severe depression for my daughter that she had to stop taking it.
    ahimsa and jack blogs like this.
  5. jack blogs

    jack blogs

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    Sorry to hear that, how long did it take her to wean off or did you just stop it at once? did the depression go pretty soon?
    I guess ill have to give bio identical aldosterone a try if florinef is doing this to me.
  6. Pam123

    Pam123

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    Yes, she did have to wean off but since she had been on Florinef for a short period of time it did not take long (I can't remember the exact amount of time - she followed the doctor's instructions on weaning off of it).

    The depression did go away relatively soon. The doctor advised her to not take any other steroid type drug that could cause this.

    So sorry to hear that you are having this side effect from Florinef.
  7. Ruthie24

    Ruthie24 Senior Member

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    I found Florinef caused depression in myself as well, but I also didn't notice any great improvement in symptoms as you are reporting. I was very anxious to stop the drug personally but it seems a shame that you would have to stop it if you have such apparent positive benefits from it.

    Are you still doing the gluten free diet? Are you noticing improvements with that? Any chance that you are missing some sort of trace nutrient in your diet which is causing the symptoms rather than the florinef? It almost seems like there is some type of threshold that gets triggered at times from the pattern you describe- but if you are taking the florinef and potassium regularly that doesn't seem like it should be the cause? Just rambling and thinking 'out loud' here......:)

    Hope you can figure something out because it sounds like you're getting some nice relief to at least part of your symptoms....but depression is miserable.
    jack blogs likes this.
  8. Ocean

    Ocean Senior Member

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    I'm so sorry you're having those symptoms. It sounds awful. I was thinking of starting florinef today. I've had the prescription for like a year and with the summer heat lately my POTS is really bad but now I'm having second thoughts after reading this thread. I already am dealing with mood issues due to hormones and am working on addressing that with supplementation so I really don't think I want to add another drug that may cause the same symptoms into the mix. For most people who do get this side effect, how long does it take before it's noticeable?

    Jack Blogs, I hope you will find a way to eliminate the side effects or try something else for POTS. Beta blockers work as well, right? I'd be curious to hear what your doctor suggests. Wishing you quick relief!
    alwayshopeful likes this.
  9. Ema

    Ema Senior Member

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    My vote is the Medrol. It is much more likely to cause mental issues and mood swings than the Florinef in my opinion. Can you switch to hydrocortisone which is a bioidentical steroid instead?

    Ema
    jack blogs likes this.
  10. jack blogs

    jack blogs

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    ** i know my posts arent the most organized but i really appreciate this discussion as I actually feel like ending it all times, ive been so ill all my life yet coped so well..and have always felt if i could do my research id work this out and live a good appreciative life but these mental swings that come out of nowhere and have no reason feel much worse than any physical pain or symptoms ive ever felt, i just dont know how people could cope feeling like this, and although so many many symptoms have improved this mental issue is ruining what could be**

    Im typing this as its later in the day and my mood feels quite normal to me, no depression, no over emotional-ness, no anxiety, 2moro i will probably wake up with anxiety even though it makes absolute no sense to me why i would feel so much worse in the start of the day and then 10 hours into the day i feel so much better.


    I dont have a diagnosis of POTS but I do have low aldosterone, infact it looks like I have late onset CAH (congenital adrenal hyerplasia) with both low cortisol and aldosterone. Ive suffered from low cortisol since puberty... and not known what was wrong, just plodded along and had an awful, moody, exhausting life untill i started researching what could be wrong with me. I found adrenal and thyroid groups on yahoo boards and learnt alot about cortisol and thyroid and realised i am hypo and have been for a long time - however being hypothyroid has never caused me any mental issues in terms of anxiety and depression, I can cope with being hypo for now.

    I started on HC and had slight relief, enough to bother taking it,enough to know I needed it, it helped me feel better but not as much as expected, 40mg wouldnt even supply enough cortisol to use any thyroid hormones (they would just pool in the blood)

    I then descovered people who didnt do so well with HC may do well on a longer acting steroid like prednisone or medrol. When I first added in medrol I did infact experience depressive swings and extreme anxiety but i look back and think that was due to a thyroid dump as the T3 i was taking at the time was far too high to just take at once (meaning: on hydrocortisone i didnt realise the thyroid medication wasnt getting into my cells because the cortisol wasnt strong enough. On medrol the cortisol was a LOT better and I think the T3 all flooded into my cells at once causing me to by hyperthyroid.

    So i stopped the medrol, kept taking the HC,lowered and weaned off the T3 (my thyroid later reset back to its original levels, thankfully)

    January the 1st 2013 i thought id try the medrol again (now taking no thyroid meds) and from the 1st dose I felt good cortisol levels, it was incredible! I have had sleep issues all my life, trouble sleeping on a night and getting out of bed before 12 hours and then when i did get out of bed i would feel like a zombie, it was terrible - all my life!!
    medrol fixed this completely, I could now focus and think much better, had a lot more energy, I wasnt extremely irritable from the low cortisol anymore and my family and friends noticed a massive difference in me, coming off medrol and back onto HC would kill me, i just cant go back to low cortisol again, i really am hoping medrol isnt doing this to me because it works a treat for what its supposed to do, why do you think it could be the medrol Ema? have you heard of this happening?
  11. jack blogs

    jack blogs

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    Still gluten free. Yes.. since going gluten free (it could be coincedence ofcourse) all these swings started happening but my energy has been better than ever - even when im depressed. Ive been going for a lot of walks when the depression and anxiety goes - this is just not like me, somethings changed for the better but for the worse as well

    Its blowing my mind how I could be so bad in the mornings but better later in the day. What happens is the morning anxiety and depression will get less and less day by day...after about 10 days It gets a lot better and then out of nowhere a big mood swing will come out of nowhere, my appetite goes and my anxiety comes running back and the process restarts! it happened last Friday, i was convinced it wasnt going to come back this time and I thought it must of been the gluten withdrawal and it was just a phase but sure enough out of nowhere- started crying with extreme anxiety. I was with my mother and I was crying for no reason basically saying " I dont know why this is happening, im not even worrying or thinking about anything negative, its just coming out of nowhere, it doesnt make sense"
    I still have hope its some kind of gluten withdrawal because this time the depression and anxiety are MUCH less and the physicall sickness with throwing up did not occuer this time, so i suppose if this cycle keeps happening and the blips keep getting less and less i could put it down to some kind of withdrawal but at the back of mind I fear i may have to come off one of these drugs that help me so much. I cant win either way.


    I swear, I have to work this out :(
  12. Ema

    Ema Senior Member

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    Medrol made me so depressed that I wanted to stick my head in an oven. Same thing with prednisone. I was able to take dexamethasone successfully though without the side effects.

    Cortisol kind of has to be strong enough to utilize thyroid hormone because that is what we make and use naturally. I wonder if you needed a higher dose at least short term?

    How much T3 were you taking at that time? What were your thyroid frees when you felt like you were pooling?

    Ema
    jack blogs likes this.
  13. jack blogs

    jack blogs

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    about 70mg of t3 when i think I had the dump. when I was pooling on HC my FT3 was over range yet i felt nothing at all, not hyper, like it was doing nothing. i wish HC worked well for me but it didnt.

    I really dont feel like I need a higher dose of cortisol, I dont really feel like im low on cortisol anymore since starting the medrol. Im currently not taking any thyroid hormones. I know my DHEA-S is now very poor since starting the cortisol, I wonder if that could be related, I didnt want to take DHEA untill I found my thyroid dose because I understand DHEA will lower cortisol.

    Getting a Dr to prescribe Dexamethasone would be nigh on impossible for me in the UK. I really dont know what my next move is, however I did speak to a guy who got depressed on medrol but did really well with prednisone, so perhaps I should try that.
  14. Ema

    Ema Senior Member

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    HC doesn't work well for everyone, that's true. Certainly people with infections often have a hard time because of the short half life. I would see what you can do about trying pred or dex. It just might be what you need.

    I also think that replacing DHEAs to age appropriate ranges is essential for well-being.

    Ema
  15. taniaaust1

    taniaaust1 Senior Member

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    My specialist doesnt like using beta blockers much for his POTS patients as he says they dont often work so he tends to prescribe Florinef which has a much higher success rate on POTS.

    I dont think you should let anothers bad experience with florinef put you off of giving it a trial for POTS as this thread is the first time Ive heard of Florinef giving people mental health symptoms ,so I dont think this kind of side effect is common with it. Also its so easy just to stop or come off of it if u do find yourself having issues with it (unlike many drugs). Having untreated POTS truely sucks as it can make so many of the ME/CFS symptoms worst
    ahimsa likes this.
  16. jack blogs

    jack blogs

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    Dropped the Florinef more than 8 weeks ago now and still suffering phycosis if you can call it that, I should have dropped the Medrol long long ago.
    2.5 weeks ago I switched to Prednisone and things arent much better, I really should have dropped the Medrol earlier, I dont know how long I should wait to see if the medrol side effects pass before trying Dex, can't believe whats happened to my brain on this drug, scared of losing touch completely.

    In terms of dizziness and im doing fine without florinef, it seems that aslong as I have good cortisol levels im not all that dizzy anymore even though I have low Aldosterone.

    Ema I should have switched to prednisone when you mentioned about the Medrol. Could you please tell me how long the sides took to drop for you and how long you took medrol and pred for before going onto dex? it would be much appreciated.
  17. Ema

    Ema Senior Member

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    How much pred are you taking now?

    I'm concerned that you have gotten totally out of balance with everything since you've been feeling so terrible. Has your doctor that treats you for the CAH been able to do any tests to help you out? Are you electrolytes out of whack?

    If you're still having the symptoms 8 weeks after dropping Florinef, it would seem unlikely in my non-medical opinion that the Florinef was responsible for the issues. If you have documented low aldosterone, you should talk to your doctor about your need for Florinef. Low aldosterone is linked to anxiety, as is low thyroid. It might not be the steroid at this point but a mixture of hormone deficiencies and electrolyte disruption. It sounds like you need a good, solid consultation to help you figure this out with your doctor.

    The side effects from Medrol shouldn't last a long time. It should be out of your system within a few days. I honestly can't remember how long I took Medrol, maybe a few weeks (of hell). I took pred only once and knew it wasn't for me. I went back to HC for quite some time before I switched to dex and I took dex for more than a year after that, occasionally a dex/HC combo.

    Isn't there a CAH association in the UK? Maybe they could help you find a specialist that would work better with you?

    http://www.ahn.org.uk/

    Ema
    ahimsa likes this.
  18. xxRinxx

    xxRinxx

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    I'm taking Florinef and the only side effects i've had are, some weight gain, increased nausea, and dull head aches. I haven't noticed any changes in mood though.
  19. dsdmom

    dsdmom Senior Member

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    I stopped taking florinef because of mood changes.
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  20. Tito

    Tito Senior Member

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    Me too. Even though I felt somehow more energetic, I was still homebound but everything seemed to trigger anger. So altogether my quality of life decreased. So I stopped.
    There is also something else I noticed. When my blood pressure increases to normal level (with Florinef, I had the same with GcMaf+Nexavir, I also had that years ago for reasons I never identified) I feel more energetic, I do not suffer from the cold and can do a lot more. Years ago (8 years into the illness), I suddenly had a normal life, from skeletal, I became normal, I could do things that other people my age could do.
    But on these three occasions, there was a major relapse after 2-3 months: bedbound, multiple infections (my GP thought I had full blown aids). It was terrible. I came to the conclusion that in my case, the low blood pressure is not the cause of my illness but somehow an adaptation process, a way for my body to protect myself from further damage.

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