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3 1/2 years on prednisone. Now I’m off and have anxiety, nausea l, light headedness and brain fog.

Posted , 4 users are following.

wes73548
wes73548

I am a 39-year-old male with ocular myasthenia gravis, an autoimmune disease. i was prescribed prednisone about 3 1/2 years ago. I started off on 40 mg then went down to 30, then was basically a 20 for about two full years. Starting in January of this year(2020), I started tapering down to 15, then 10 for several weeks then back-and-forth between 10 and five, and then 5 mg for six weeks before stopping completely on June 4th.

I felt ok for the first week after stopping, but since then have had the following symptoms:

Nausea, light headedness, brain fog(severe at times), anxiety, and just generally not feeling well

My neurologist said there is no way its because of the prednisone because I was on such a small dose, even though I was taking the drug at some level for 3 1/2 years.

I'm going to get my cortisol levels checked soon, but definitely don't want to go back on prednisone if they say I'm low.

Am i going crazy, or is this normal after being on it?

0 likes, 4 replies

4 Replies

  • EileenH
    EileenH wes73548

    Posted

    You are showing typical symptoms of adrenal insufficiency - I am appalled at your neurologist's knowledge level! To reduced from 15mg to zero since January was far too fast - from 10 to zero after so long on pred above 10mg would be expected to take more than that and a recent study in Leeds has found that far more people have difficulty regaining good adrenal function after long term pred than has been thought. You should have had a synacthen test once you got to 3mg - you should have tapered from 5mg at not more than 1mg per month. That shows if your adrenal glands CAN work, not that they are doing so.

    You need to see your GP asap and discuss this. You could become very ill if you were to develop an adrenal crisis and need hospital treatment, one friend of mine was in ICU as a result. They may not put you on pred - though it is a good option when you are used to it - but an endocrinologist might suggest hydroxycortisone which is the usual approach to get adrenal function to start up again as you taper the steroid dose SLOWLY.

    But not to take anything isn't really an option - it could make you very seriously ill.

    • wes73548
      wes73548 EileenH

      Posted

      Thanks for the info. I think I should have tapered slower also. i have an appointment for labs tomorrow. My neurologist prescribed 1mg of prednisone that i can start taking after I do my labs if I want. I'm not sure how I feel about getting back on it but I definitely don't want to feel like this .

    • EileenH
      EileenH wes73548

      Posted

      1mg isn't enough to deal with adrenal insufficiency - please get advice from your GP.

  • denisse72714
    denisse72714 wes73548

    Posted

    are you doing better? Did you have to take prednisone again? I feel horrible after stopping prednisone and I only took it for 5 days.

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