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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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    Hi Ema i got in contact with a CAH charity and saw a Dr they recommended 2 days ago.
    He was a very nice Dr, he doubted I had CAH but said Adrenal Fatigue from an early age is possible and something he believes in and has offered me support. He talked about how I will have to manage these symptoms while still taking the steroids and talked about working together with pshycologists and other doctors to manage the symptoms...these symptoms are LIFE ruining, i cannot go forward like this feeling mentally ill and so very vunrable at times, but before the steroids I had no life anyway because I could hardly get out of bed but never experienced such weird feelings nor depression nor these disturbing outbreaks where i cant stop crying aggresively, getting so emotional.

    He talked about Dexamethasone and was highly concerned this would make me worse because its stronger and would lower other hormones too low (- I got the impression he thinks this has been causing the sides), which it could but i believe I could be reacting badly the drug compound of medrol/pred itself rather than its effects on other hormones, so I will try Dex, I feel I have to do something very soon im in such a mess.


    If it was the Florinef I wouldnt still be having appetite problems 9 weeks later I guess? the reason I kept taking these steroids so long without making changes to them is because after weeks passed by things would get less weird or my mental state would change a lot even if things still felt strange and artificial, its hard to explain really, but it kept me thinking "oh, i must be getting better"


    Since switching to 8mg of Pred 3 weeks ago i dont walk around the town aimlessly with this crazy energy as much but still feel very wrong, I wake up every morning feeling sick and cannot eat untill late in the day, many days I wake up thinking

    Ive been taking slow release potassium pills and my recent elytes panel showed sodium at 144 and potassium at 4.2 so they dont look bad at all BUT if I dont eat well on a certain day I will have poor elytes but its so hard when your appetite is supressed, ive had a massive appetite all my life untill these drugs.

    Life feels more real since going from Medrol -> Pred but things are still very very wrong.

    Ema I know this sounds like a stupid question but did Medrol make you feel detached and did things feel disturbingly different and almost 'unreal'

    Do you not take steroids anymore Ema? when you took Dex alone how much did you take? I REALLY wished HC worked for me - i had no sides, although I never did try cortef just a generic brand called 'douglas' not sure if that would make a difference in stregnth.

    Thank you for all the help.


    P.S
    I am doing a full hormone panel next week but I really doubt this is hormonal rather than caused by the drugs. For example if i had a testosterone defeciency wouldnt the symptoms be consistant? its asif my brain became more adapted to the drug as time passed and some mental aspects got easier - another reason why I considered it must be the florinef just 'wearing off' but no appetite 9 weeks later from florinef? seems very unlikely doesnt it, especially seeing as some days it can be better than others, ocassionally i will have 2-3 days of a normal appetite only for it go bad again. It still blows my mind how these drugs have given me such artificial nervous energy. 2 week ago i went on a 5 hour walk and didnt feel tired but felt very drugged. It doesnt make sense for someone who is hypo to be able to do that, infact none of my healthy friends could or would do that.
  2. Ema

    Ema Senior Member

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    It sounds like you found a very good doctor and I'm thrilled that you were able to get some help.

    Medrol made me suicidally depressed. All I could do was lay in the bed and cry. I was exhausted but unable to sleep. Not so much detached but I could see that happening too.

    How are you taking the pred? Have you tried splitting it into two doses?

    I did wean off the steroids last spring. So far so good. It turns out my adrenal dysfunction was due to infections.

    I took .5 mg dex when I took it by itself. This is approx equal to 30 mg HC. Most charts underestimate the conversion in my opinion. Dex is stronger because of the half life.

    When I took it with HC, I generally took .25 at bedtime (to peak about 5-6 AM) and then 20 HC divided 10-5-5 through the day to try to create an artificial circadian peak. It wasn't always successful but this is how I felt best.

    Dex can be suppressive to other hormones, it's true. You'll just have to see if it works or not for you. Some people have to up their other hormone replacement to compensate.

    I think a full hormone profile is a good idea regardless. It's good to have a baseline.

    It does seem unlikely to me that the Florinef is responsible for the symptoms.

    Keep us posted!

    Ema
  3. jack blogs

    jack blogs

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    Thanks once again Ema.

    These last 2 weeks I have felt less depressed, not suicidal at all this last 2 weeks actually and I dont wake up feeling as physically sick anymore, I also havent had a crying fit in a while!. I dont know if this is because I tolerate Pred better (im now 4 weeks on Pred) or Im just getting used to the steroids because even while I was on Medrol things would get less bad as the weeks passed which is really confusing. Unfortunately I still feel very irritated like I cant sit down for too long, still feeling the need to be going on many walks a day, its so strange! something feels really off and uncomforting.

    I dose Pred like this

    8am (wake) 4mg
    4pm 3mg
    11.15-12pm (Sleep) 1mg

    Ive acquired some generic Dex and will try it after getting the last of my blood tests done. I feel like its my last chance in many ways but its probably not a good idea to hope for little side effects in something so synthetic and unphysiologic. I know cortisol isnt going to cure everything but its hard to work on other areas of your health when you have so many changing symptoms from 1 vital drug.
  4. jack blogs

    jack blogs

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    Are you sure Dex peaks? most of the info I could find on it says its a very flat profile and should kick in straight away but I appreciate it could be different in other people as like you said the conversion charts seem off, ive heard others say the same about that.

    Seeing as you went from Pred/Medrol to Dex I was wondering if you just dropped the previous drug and added in Dex or added in Dex and then slowly dropped the Pred?
  5. jack blogs

    jack blogs

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    Going to start it 0.5 on its own 2moro and see how I do, just not sure when to drop the prednisone
  6. Ema

    Ema Senior Member

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    I actually went from Medrol back to HC and then onto Dex.

    Generally it is recommended to stay on your dose of HC for the first 3 days when switching to a long acting steroid like pred or dex to give it time to build up properly. I'm not sure exactly how that would work from pred to dex though. I would probably switch over all at once and have HC on hand to stress dose if necessary. But you might need more coverage than that.
    jack blogs likes this.
  7. Ema

    Ema Senior Member

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    jack blogs likes this.
  8. jack blogs

    jack blogs

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    OK, if you find it please let me know.

    Thanks again for your help, means a lot! I think ill switch over at once after a day on dex and have HC or even pred if its really bad ready to stress dose.

    I was searching through these forums looking for experiences with Dex and found a post of a lady who said Medrol would make her walk around and talk to herself all day, it really is horrific what the wrong drug can do to you. So many take medrol and do absolutely fine. If I feel less sides on Dex it could be that I tolerate Florinef afterall. I think Florinef is part Dexamethasone + fluride
  9. jack blogs

    jack blogs

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    Maybe I should give HC another try first, was the switch from pred/medrol to HC very hard?
    I never actually tried Cortef HC just the generic 'douglas' brand you buy online, I have heard of people having trouble with the generics recently, I do now have proper Cortef to hand.









    --------------------------------------------------------


    This is all I could find on the cortisol peaks of dex:

    http://congenitaladrenalhyperplasia.org/Final_24_Hour_Profile_Article.pdf

    It states it has a "rather flat profile" but it also says its duration of action is 12 hours - but it sounds odd having to take 2 doses of dexamethasone a day so im not sure thats accurate.


    and then here:

    http://www.cahisus.co.uk/pdf/CIRCADIAN RHYTHM DOSING.pdf


    Dexamethasone doesn’t have such a peaky nature and tends to
    last for anything up to 12 hours in the circulation as
    ortisol but its duration of action as an anti
    -inflammatory can be anything up to 24 hours.

    Hydrocortisone will need to be given at a minimum three times a day and something like four times a day
    would be more appropriate.

    Prednisolone is widely advertised as twice a day treatm
    ent but probably needs to be given three times a day.

    Dexamethasone is often given once day, overnight but
    probably needs something like twice a day in actual
    practice.


    So for CAH they do prescribe it to be taken at night, i wonder if thats to surpress those excess androgens rather than because of the cortisol peak itself, confusing!
  10. allyann

    allyann Senior Member

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    I ended up in a psychiatric ward for five weeks with severe major depression with suicidal thoughts whilst on florinef. While I was in there I was placed on cymbalta which also raised my blood pressure. They took me off florinef and almost instantly the suicidal thoughts disappeared. It has taken longer for the depression to resolve itself.
  11. xks201

    xks201 Senior Member

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    Medrol is what is messing with your head. Guaranteed.
  12. Ninan

    Ninan Senior Member

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    I just started taking Florinef and yesterday I felt great -- much more energy, although very hungry.

    Today I still have energy but mood swings too. Angry and sad for no reason.

    I know I'm very sensetive to insuline levels and guess increased insuline might be causing the mood swings.

    I often have the psychiatric side effects while starting new meds. Inderal made me depressed for a few days but it passed.

    Will this pass too? Will I feel better after some time?

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