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Been on 15mg of prednison for over 2 years for undiagnosed pmr

Posted , 4 users are following.

deb88821
deb88821

I've been on 15mg prednisone for over 2 years, about 7 months ago I developed severe insomnia and periodic episodes of extreme rage. I'm currently tapering off the prednisone and I'm being treated for insomnia. Could the prednisone be causing all of this including the rage even if that is just periodically? My life is a mess because of this and my marriage is at risk, not to mention the toll this is taking on my health.

I would appreciate any insight on this as the doctors don't seem to have the answers either. Thanks in advance,

Angry and sleepy in Wisconsin.

0 likes, 8 replies

8 Replies

  • EileenH
    EileenH deb88821

    Posted

    Sorry to sound a bit dense: if it is UNdiagnosed PMR, why are you on pred?

    Pred can cause all sorts of mental side effects but it is more common at higher doses and it seems strange it is episodic. Are they sure it is PMR and not some other form of vasculitis?

     

    • deb88821
      deb88821 EileenH

      Posted

      I was prescribed prednisone for pneumonia, during the course of taking this the severe pain I had been in started getting better and in a few days was completely gone.

      Prior to that they had ruled out fibromyalgia, and central sesitization. Wit the dramatic improvement from the prednisone the determined it was most likely pmr as it is sometimes diagnosed this way.

  • JackyF
    JackyF deb88821

    Posted

    Insomnia and trouble controlling emotions are known side effects of prednisone. Having suffered from both (not rage per se, but certainly trouble controlling my emotions), I think it's possible that the prednisone is a contributing factor. Sleep deprivation in and of itself puts one off balance. What do you mean by "periodic episodes", i.e. how long to they last, and how would you describe 'rage'?

    Do you find your mind racing (creatively) so much that you can't fall asleep? Or are you worrying/ anxious about problems in your life and can't stop thinking about them? Something else? How is your insomnia being treated? Medication and if so, which?

    I found that many of the side effects prednisone had on me led to other symptoms that may or may not have been caused by the prednisone itself. Sleep deprivation, for example, led to the inability to control my emotions (crying or losing my temper for 'minor' reasons), and the swelling/ bloating of my upper body and face made looking into the mirror unbearable (feelings of inadequacy, frustration, hopelessness). My marriage also suffered during this period.

    What worked best for me was working out (cross trainer or jogging mostly and for 30 to 45 minutes). It seemed to provide the answer to both problems. If your pain is such that this is out of the question, would swimming be an alternative?

    That's just what helped me.

    • deb88821
      deb88821 JackyF

      Posted

      I didn't have any problems until about 7 months ago re: insomnia and or emotions / rage. When I refer to rage I'm referring to uncotrolled anger.

      I will become verbally abusive and self destructive to the point that I don't recognize the person I've become. When this happens I'm at my worst with the insomnia, I generally getting about 1-maybe 3 hours of sleep the entire nite. This will usually last about 2 weeks then I go the milder insomnia where I get 3-5 hours of sleep thru out the nite and do not experience as much emotionally and no rage.

      During the bad times I try to isolate myself so as not to offend or possibly hurt anyone. I'm in the process of tapering but that can take a lot of time due to the adrenal glands. Thanks for Taking the time to help me. (I am under a doctors care)

    • anapp
      anapp deb88821

      Posted

      Just saw this post.  Withdrawal symptoms from tapering off usually last me about 3 weeks and include extreme fatigue, and worsened insomnia.  Do your episodes coincide with your tapering?  Just before I'm about to do another reduction is when I finally start feeling better. I would still look into an anti-anxiety drug.  My sleep doctors wanted me on one but I declined.  My symptoms aren't as severe as yours and I just didn't want to take another drug, but if my symptoms were worse, I would consider it.  And as JackyF said, exercise is really helpful as well although you may have to push yourself to do it.
  • anapp
    anapp deb88821

    Posted

    Hi Deb, I started a higher doses so am not sure about a high of 15, but in my opinion, long-term Prednisone use can cause all kinds of things and sometimes I think symptoms from tapering off are worse.  I already had insomnia, but has been much worse on Prednisone and my moods have gone from euphoria, to anger, to anxiety, to depression and back again even on low doses as I'm tapering off.  I don't think your symptoms are unusual.  Will your doctor give you an anti-anxiety pill which should help with sleep and mood?  .
    • deb88821
      deb88821 anapp

      Posted

      So reassuring that others have had same experience and I'm not crazy. I didn't understand why it wasn't happening all the time since I'm still on it. When I referred to periodically it refers to the really bad times which is about every 2 weeks. I'm currently seeing a sleep psychologist for the insomnia, but wonder if this is necessary if the insomnia is caused by the prednisone. I have been perscribed diazapam, which helps during the extreme episodes of rage, but does nothing for sleep. This has been a long haul and so confusing as no one has been able to give a straight answer. I see a rheumatologist July 1st in regards to the prednisone and the tapering. I desperately n

      eed sleep and am so confused as to what is happening to me.

      Thanks for answering as it has been reassuring to me.

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