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Hard time on Hydrocortisone-Need support

Discussion in 'Adrenal Dysfunction' started by Misfit Toy, Jul 1, 2014.

  1. Misfit Toy

    Misfit Toy Senior Member

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    I feel like I keep writing about adrenals, etc. ever since I was on Prednisone and then went off, I've completely tanked. No energy and HORRIBLE pain. I then went on Cortef and stopped because I was so tired.

    Tried 10 mg of Cortef today and feel nuts. I don't get it. Plus, my GERD is in full force on Cortef.

    I am so sick of taking things that others can take and I can't. I think I will have to stop Cortef due to this unbearable anxiety. Crawling out of skin.

    I'm sad. I just want something to work.
     
  2. caledonia

    caledonia

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    I don't tolerate cortisol either in any amount - I can't imagine doing the high strength prescriptions. I'm even having trouble with some hydrocortisone itch cream.

    I believe this is due to the adrenals having a signalling problem rather than having actual adrenal fatigue. It will look the same on adrenal saliva tests. Rich Van Konynenburg talked about this.

    I've had better results replacing the electrolytes which are leaking out, then also doing methylation treatment to raise glutathione to restore the signaling so that the adrenals will then start to function properly.
     
    golden and Misfit Toy like this.
  3. Misfit Toy

    Misfit Toy Senior Member

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    Thanks Caledonia. I appreciate it. I feel like everyone can take stuff for adrenals, but I can only take the basics. Hydrocortisone makes me anxious and feel awful. I can't do it, bottom line. I have no idea why.
     
  4. rosie26

    rosie26 Senior Member

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    I'm like that on Prednisone Misfit, it was unbearable. It was impossible to carry on with Prednisone after just one tablet. Never tried Cortef.
     
  5. Misfit Toy

    Misfit Toy Senior Member

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    Thanks Rosie, I was great on prednisone, but going off of it was a different story. Cortef is my down fall. It sucks.
     
  6. Kati

    Kati Patient in training

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    You are withdrawing from the prednisone. It also made your stomach fairly raw. do make sure you keep your stomach coated, drinking milk or perhaps ice cream could help your stomach a bit.

    what was your dosage on Prednisone and how long were you on it for? Stopping the cortef straight on is not helping the matters to be honest because you have just cut off your adrenals from the juice. When I was weaned off Cortef, it was done very gradually over 1month and I still feel it was too fast.

    I am urging you to contact your doctor and asking for advice in that regard. feeling nuts and crawling out of your skin is yet another sign that you are having withdrawal from Prednisone and Cortef.

    ETA your dr may also be a hand with your stomach


    P.S. I was an oncology nurse in my previous life, we gave 100 mg of Prednisone on certain protocols, so I have experience with sore stomachs, high and low moods and I also have the hands on experience of being on Cortef for3months and getting off it. It will get better, but believe me, it's not Cortef that's giving you all of these symptoms, it's getting off it and so drastically.
     
    Last edited: Jul 2, 2014
  7. Misfit Toy

    Misfit Toy Senior Member

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    @Kati -I only took Cortef on Friday and today. 10 mg. There is no reason to taper off of it. It may not help matters but walking around feeling like an absolute lunatic was no good and I have no regrets about stopping it. NONE.

    The prednisone did nothing to my stomach. The Cortef did in the 2 days I took it. I felt fine on Prednisone and had ZERO side effects. The only side effect I had was a horrible time going off of it. I was on it for 6 days starting at 40 mg. Then tapering down the way he told me to. I was okay with the tapering down, too. I was not okay the day I didn't take it. For 3 days, I slept like crazy and lived or writhed in pain. I had so much pain off of it, it was weird. I still have the pain and it's been since Thursday of last week that I stopped.

    I can't get through to my doctor. He is a CFS doc and not easily accessible. He leaves on vacation tomorrow for the American holiday. I was crawling out of my skin from Cortef....taking it...not stopping it. Within an hour of taking it, I felt nuts. If I had taken more I would have become worse. I was taking ativan to stop the ill effects of Cortef.

    So, there really is no withdrawl from Cortef. Withdrawal was coming from Prednisone, but one can't be expected to continue on a medicine that is making them feel absolutely psycho. Meaning, the Cortef.

    I was on Medrol once and was up all night for 3 nights. I finally stopped it and felt so much better. The pharmacist even said stop it. It was either that, or absolutely going nuts.

    PS) allergic to milk. But eating and drinking. Having tea right now.
     
    golden and rosie26 like this.
  8. Kati

    Kati Patient in training

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    @Misfit Toy what you are talking about is totally normal. You are supposed to feel good, somehow high on Prednisone. And when you get it cut off your body does not like it. Lethargy, depression, and yes, sore stomach is totally expected.

    Remember that this is temporary and it will go away.

    Try antacids in the meantime. Maalox, Zantac, Pepto. You need food that will coat your stomach, think creamy. Try almond or coconut milk maybe, or coconut ice cream.
     
    rosie26, Wayne and Misfit Toy like this.
  9. Kati

    Kati Patient in training

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    If you look at this calculator, your 10 mg of Cortef is equivalent to 2.5 mg of Prednisone. so dropping from 40 mg to 2.5 to nothing is a big deal.

    http://www.globalrph.com/steroid.cgi

    When I was weaned off Cortef, we went down 5mg per week and it was in my opinion still too much. Bet you were weaned off much faster than that, and I am not blaming the physician, I am just telling you that it's rough, it's really rough but this will pass.

    I am also suggesting you should see your primary physician to make sure you are ok.
     
    rosie26, Misfit Toy and Wayne like this.
  10. Misfit Toy

    Misfit Toy Senior Member

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    @Kati - see, he never told me that. He has 20 minutes to deal with way too much with me. CVID, CFS, Fibro, adrenals...so he misses key points.

    Unfortunately, he is away so I will have to rough it out. The 4th of July is messing up everything because literally all my doc's are away. If things get bad...ativan to the rescue and just chilling as much as possible. And, a hot dog in honor of 4th of July. The sun helps me, but today I couldn't move due to Cortef.

    Thanks for letting me know. Dang, he should have let me know that!!
     
  11. Kati

    Kati Patient in training

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    @Misfit Toy I don't have to specifics on your medical history- for certain cancer protocols like I said before, patients get 100 mg Prednisone for 5 days, and then stop. For 5 days we would watch them they would basically run on adrenalin, eating like ravenous beasts, sleeping very little and they felt great. And afterwards, things pretty much crashed for them and they slept, and moped, and complained of stomach upset. I can only imagine.
     
  12. Misfit Toy

    Misfit Toy Senior Member

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    100 mg...that's insane. And no tapering down. I actually had not much appetite on prednisone but felt or I have been told my face looks puffy but after only 6 days....I am not sure if I am just looking old. I feel old. I feel like I must look old.
     
  13. Kati

    Kati Patient in training

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    it's certainly not a drug you want to stay on forever. Osteoporosis, weight gain, fat redistribution, just ask patients with RA and lupus. It has very serious long term consequences when taken daily.
     
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  14. Misfit Toy

    Misfit Toy Senior Member

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    I know. One woman swears that the whole prednisone shutting down adrenals is a myth. She has been on it for 10 years. But, I don't buy it or believe it. There is too much info on how it really damages people. One less thing I need.
     
    Kati likes this.
  15. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Misfit Toy I've never taken Cortef but just wanted to add my support as you were so kind to me in my ER & cardiac threads last week. I've had terrible reactions to meds that seem to work great for others and know how terrible that feels. And I totally relate on the July 4th holiday messing up appts and the on-going mold remediation work on our condo (so I can move back home!) Can we just skip the holiday this year? Hope you feel better soon and hang in there!
     
    Misfit Toy likes this.
  16. Cheshire

    Cheshire Senior Member

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    I too took hydrocortisone but I had to stop because it made me in a state of high anxiety. (and in fact I have no real adrenal deficiency, my levels are just playing yoyo).

    I'm relieved to see I'm not the only one.

    This reaction was dismissed by nearly all doctors, implying it was a kind of nocebo effect... that hydrocortisone couldn't drive to such symptoms. Then my mother told me that my grand-aunt had similar symptoms with it (I spent one whole night having horribly realistic nightmares, I was falling of a building + palpitations + panic attack, fear of dying, my grand-aunt dreamt that she was stuck to the ceiling with a tiny rope, and the rope broke and she fell, a whole night of the same nightmare...)
     
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  17. Misfit Toy

    Misfit Toy Senior Member

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    Thanks everyone. Wide awake at 3:34 am! I blame the adrenals! Suckers. @Gingergrrl43 -you are so kind and sweet. Thank you. I so appreciate. Yes, I have quite the adverse effects from meds. No fun! The adrenals are so important and really need peace and calm. Which...I am not giving them by having an ipad!

    Ugh. Sleep, please come for us all. All insomniacs.
     
    rosie26 and Cheshire like this.
  18. Dreambirdie

    Dreambirdie work in progress

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    What helped me get down from the anxiety that HC caused me was high doses of MAGNESIUM (the Natural Calm powder, to bowel tolerance) and HOLY BASIL (up to 2 every hour of New Chapter gel caps). Those were my saving grace.

    I had a very bad reaction to HC, and had *severe* anxiety and cardiac arrhythmia for 6 weeks after taking a round of HC for about a month. So horrible, in fact, that I could not move or it would become unbearable. I had to lie in bed as still as I could be and do yoga breathing exercises every few hours.

    Focusing on balancing my electrolytes, (by drinking coconut water and taking the magnesium) and using adaptogenic herbs in rotation (ashwghanda, schisandra, eleuthero root, and licorice root) helped me with adrenal recovery. I also found it really important to eat regular meals, to keep my blood sugar stable. When blood sugar drops, the adrenals have to kick in and that stresses them.
     
    Misfit Toy and Valentijn like this.
  19. adreno

    adreno 3% neanderthal

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    I felt great on HC in the beginning, but after a while things went south. Insane mood swings and crashes. It has a very short half life and is hard to dose, especially as your endogenous production is downregulated, and you become dependent on exogenous dosing. Manual management of cortisol is a mess.
     
  20. Misfit Toy

    Misfit Toy Senior Member

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    Hi. I was up half the night from adrenals and pain. My pain became much worse, as I said from going off of prednisone. The pain was so bad that I had to put on a fentanyl patch. Anyway, I didn't sleep much which is making it worse. I am so wiped out. I took off the pain patch because the pain patch like I said makes me sick.

    At this point, I am frightened to put anything in my body because I feel an absolute mess. I have had horrible anxiety.

    I dont' think licorice or anything would be good for me right now except for calming things. I don't know what holy basil is, but don't even want to go to the store to get it. Too tired.

    This is an absolute mess. There is nothing worse than pain. Honestly, the pain is really just driving me nuts. And then the fatigue and now anxiety. Exhaustion.

    Adreno, it's like you said...my moods are also everywhere.
     
    Last edited: Jul 2, 2014

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