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I've been on Predisone for 3 years due to lupus and took my last pill, a bit worried..

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JMN1997
JMN1997

I've been on Prednisone since Nov 2014 for twitching related to Chorea or as my doctors tell me, Lupus. I took my last pill Tuesday (5 mg every other day since February) and I've been experiencing hot flashes without sweating, anxiety and depression, muscle aches and more. I know these can be the prednisone's side effects but since I've been on for 3 years and slowly tapered off.. How long could these side effects last? I'm only 20 and I was planning to go to college ans get a job and everything and I was perscribed Perxotine (hope I spelled that right,) an antidepressant but I dunno if i wanna take it. I also take Cephalexin for fluid in my ear so I have a lot of meds I take and I just wanna know if the things I am having will go away and how long will it take since it's been 3 years?

0 likes, 5 replies

5 Replies

  • EileenH
    EileenH JMN1997

    Posted

    Going from 5mg on alternate days to zero after well over 2 years on pred is a very large drop - not gradual. That is enough to cause withdrawal symptoms. Your body also has to start producing its own corticosteroid when you stop taking the pred - and it maybe hasn't had time so this could be your body complaining that it hasn't got enough corticosteroid for its day to day needs. Most of us who taper steroids after 2 or 3 years take a few months to get from 5mg/day, going via 4,3,2 and 1mg to allow our adrenal glands time to adjust. Perhaps going via 5mg every 3rd, then 4th, then 5th day would have been better.

    I'm sorry, I can't help with your other questions - don't have the medical knowledge.  I really think you should discuss this in detail with your doctor.

    • JMN1997
      JMN1997 EileenH

      Posted

      Thank you for the reply, 

      I will discuss with my rheumatoligist and see what he says. Maybe I was tapered off too quickly. I was a bit excited because I did lose a few pounds and everything! Thank you for the advice, Eileen. I just needed some peace of mind because the anxiety and depression I had in the past week has been driving me crazy, and I went to the ER for the craziest things and really embaressed myself. 

    • EileenH
      EileenH JMN1997

      Posted

      You CAN lose weight while still on pred - lots of us on another forum have either avoided weight gain or lost weight while on pred by cutting carbohydrates drastically. I lost 36lbs altogether - could do with losing another 10lbs but that's the story of my life and I doubt it will change now! But low carb is definitely worth trying.

  • gridders_100
    gridders_100 JMN1997

    Posted

    I agree with EileenH. The last 5mg are the hardest and you may be best to taper down by 1mg every few weeks. Steroids are very difficult to come off and withdrawl has all the side effects you describe. I have been on pred for 2 years and am tapering for a 2nd time having got down to 1mg until I had a flare up of my disease and had to go back up to 10mg a day. As for the paroxetine I have been on this for over 20 years due to longterm depression. I find that on it I am fine as it is a seratonin inhibitor. However you may want to hang fire on taking it as your depression/anxiety problems may be due to the prednisolone withdrawl. My anxiety depression has been with me many years which is why I have medication for it. Discuss with your doctor. I know anxiety etc. are horrid but if it's due to coming off the pred it will pass. You can try my 3 mantras. Distract yourself, challenge and rationalive why you are feeling like it and finally accept the feelings. Hope things go ok for you

  • wendy62425
    wendy62425 JMN1997

    Posted

    Hello

    i have been on Prednisone and Cyclosporine ending with Prednisone for Chronic Urticaria.  My doctor has me go down extremely slowly on Prednisone I am down to 1mg and have been on 1mg for a month.  I've gone through many 1 mg.  Due to some stress in my life right now doc doesn't want me to go off the Prednisone as she doesn't want the hives to return.....me either!!! So I'll continue to stay on that dose and when she says okay to go off....she will have me do 1 mg every other day then Every other two......

    ..I agree with other bloggers!  And...no weight gain for me...no issue there!

    i wish you well!!

    wendy

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