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Mood changes with GCA and PMR on Prednisolone are well documented...

Posted , 15 users are following.

misdiagnose
misdiagnose

but what causes them?

Is it due to a lack of clear diagnosis and treatment? Is it due to threatening disability that causes anxiety and depression? Is it poor sleep and tiredness which is attributed to Prednisolone? Is it the difficulty of a definite dosage titration to prevent ups and downs of the illness process? Is it the doctors who can be inadequate, scornful or rude? Is it that the action of the prednisolone itself causes increased stress responses which have a knock on effect?

If you have any ideas about this, it is useful to share them because many of the above, and other suggestions equally as possible, can be addressed.

Your comments will help with an article I am writing for a magazine article.

 

2 likes, 39 replies

39 Replies

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  • marjory07364
    marjory07364 misdiagnose

    Posted

    I am on a reducing programme of 1mg every six weeks.   Started on 15 and now down to 7.   At the same time my doctor advised  a daily 10mg Amitriptilyne anti-depressant.   I haven't had any problems with moods and sleep has been quite good.
  • julian.
    julian. misdiagnose

    Posted

    pred is possibly / probably causing imbalances in the hormone system.

    I experienced two mood side effects around 10-15mg/day. Appeared several months after starting treatment. Pred highs, not high enough to be manic but higher than I've ever been, over several weeks with occasional not very low lows in between. Instant mood swings. Seemed to go with loss of ability to concentrate, short term memory loss, fuzziness that limited problem solving, general building sense of frustration, interruption, something had to give. Learned to simply stop and walk away.

    Feeling stable now on 6mg/day and reduced a bit of stress. But still not able to think as clearly as I think I once could. Probably aging contributing.

    • misdiagnose
      misdiagnose julian.

      Posted

      Cortisol is a stress related hormone but from what I have read, it is not clear what prednisolone's action is to the emotions. I have never had a 'high' except thinking back perhaps when on the highest dosage.  Simply walking away and learning to let go of situations is excellent advice. I wonder if the fuzzyness of the mind is related to the prednisolone or the condition. Arteritis does affect blood flow to the brain and perhaps to a small degree this might be present in PMR too. I'm sure, during the years when I had all PMR symptoms but was managing without a diagnosis that I also had early symptoms of arteritis too!
    • julian.
      julian. misdiagnose

      Posted

      while the desired anti-inflammatory effect of pred may be direct the side effects aren't necessarily direct. Its more likely that it effects something which effects something which effects something else that we observe.

      While we have simple models of hypothalmic-pituitary-adrenal and  hypothalmic-pituitary-thyroid etc. in the endocrine system its unlikely that there isn't "leakage" or "cross talk" between parts of the integrated whole.

      I think of this sort of stuff as squeezing jelly. We may not know which way it will ooze, but sure as eggs it will.

      Add extra hormone of any sort and the effects will cascade. Just more noticeable in some than others.

       

  • elizabeth20640
    elizabeth20640 misdiagnose

    Posted

    Hi I started on 80 mg pred and felt they agreed with me and felt on a high most of the time, of course along with all the side effects, a lot of irritability, only getting 3 hours sleep a night.

    but  while reducing  ( down to 20mg pred ) my mood is low, just don't feel like me almost like my personality has changed, but I am getting more sleep  maybe 5 to 6 hours a night.

    Im trying to stick to a healthy diet, eating more fish and anti inflammatory foods. Have a problem with thrush in my mouth if anyone can help with this.thanks

  • denise76179
    denise76179 misdiagnose

    Posted

    I looked up the side effects of Pred on the slip the Dr gave me and apart from the usual Osteoprosis and Type 2 D it says "depression" or "unexplained happiness."  2 opposite conditions.  I think I got the unexplained happiness one which was good, but maybe it was explained as I had been feeling washed out after work for quite a while and then PMR hit and I was diagnosed within the week and on Pred which worked very well.
    • misdiagnose
      misdiagnose denise76179

      Posted

      I think that much of the emotional experience of GCA and PMR is very dependent on our general personality and how we deal with illness and disability, what support we have and how active we manage to stay whilst dealing with the withdrawal of the medication, which can be very rapid. The rapport, or lack of it, that we have with our doctors can change our response to our illness. Tests have shown that doctors who are empathic, non-judgemental and genuine have patients who recover better and quicker than doctors who are dismissive, impatient, judgemental and untrustworthy! It is good to know that some patients have a time of happiness on prednisolone when the dose is high but the side effects of a high dosage are a threat to long term health. Happiness is a matter of comparison. If a person was feeling desperate for some time, prednisolone, being the wonder drug it is, can renew the belief in being well again, even if it is only in the short term. Usually a reduction in the drug causes feelings of hopelessness, especially when the drug is reduced too quickly and symptoms of the illness return with a vengeance. 
  • Handbrake
    Handbrake misdiagnose

    Posted

    I have been diagnosed with PMR 6months ago and apart from a recent steroid injection in my shoulder have not taken prednisolone tablets ( personal choice) my mood is affected by pain and the disability to my usual life. I've learned to listen to my body and when in pain take things slowly and break things down into small manageable chunks ,that way I still feel a sense of achievement . When the pain is less I speed up ( I love those days!) so for me it's one day at a time 
    • misdiagnose
      misdiagnose Handbrake

      Posted

      I think there is great wisdom in listening to the body's needs Handbrake. Though easier said that done after a busy and active life and to suddenly to find oneself incapacitated or even just needing a huge effort to carry out the simplest task, like hanging out the washing, bending down to pick something up off the floor or walking up steps. I also preferred not to take prednisolone and managed with rub on anti-inflammatory creams for several years. I swear by asprin for those who can stomach it. They say we are never as likely to argue with others than when we are angry with ourselves and I think this is so true for those with PMR/GCA. I, like others, blame myself - what have I done to get this? etc.I have heard of doctors telling patients to lose weight and take exercise, not even offering a blood test which might reveal the dreaded inflammation. As you say, regular rest periods, being kind to oneself, small but consistent ways of testing whether one is improving in strength, all help give that necessary sense of personal satisfaction that is so easy to lose sight of when weak, stiff and in pain.  
  • suesing
    suesing misdiagnose

    Posted

    Hi Misdiagnose,

    Usually I find that I feel very low both pysically and emotionally after a period of feeling well or stressed and pushing myself too much.  Despite being very familiar with this patten now, when I'm at a low point, I am completely exhausted and unable to do or think the simplest of things, which makes me feel very anxious.

    For the last few weeks, I have settled on my dose of 5mg of Prednisolone and have been feeling almost normal physically and in good spirits. For a variety of reasons I came under a huge amount of stress on Friday/Saturday and determined to have some relief from this, I was out very late until the early hours of Saturday morning...enjoying myself.  Bang...Sunday morning I was a complete physical and emotional wreck, together with that particular PMR fuzzy head that I can't explain. Yesterday I was less fatigued and today feel quite good again.

    Before having PMR, I never experienced such drops in my mood and physical state of being.  I personally think that because our adrenal glands stop functioning when we are on Prednisolone, we are unable to produce the extra cortisol when we need it to deal with extra stress.  We are stuck with a given dose each day.  This makes all of lifes stresses, like the ones that you mention, all the more difficult to deal with and we suffer for it, both physically, mentally and emotionally.

    I know I'm only talking about the affects of Prednisolone here and I'm sure PMR/GCA also affect our emotions.

    • LayneTX
      LayneTX suesing

      Posted

      I agree with suesing and all. Same experiences. 

      My high was 20 mg and I felt HIGH! No pain for a month!!! But feared the drug and lack of sleep would catch up! 

      Between say 15-10mg I had brain fog. Didn't feel myself, couldn't make decisions. Maybe I dropped too fast. Will share that w doctor next week. 

      Brain feels much better now at 8 mg. though sometimes I can't make decisions but much more clear now.  But pains are higher, I'd say 75%.

      i get blood tested soon. But my SED and c reactive proteins have been normal for 5 of my 7 months in. 

      The mental aspect is probably something we have to work on more than normal... I've said to many people, even strangers, that I'm on a drug that makes it difficult for me to think and they "seem" understanding! 

      I avoid those who say "you don't look sick" wink

      i can tell others of this forum so they KNOW this condition exists! Even for 50 year olds.

      good luck on your article misdiagnose, you got me thinking maybe I could get local paper to write up something. I hated the feeling of being alone with this and doctors not helping other than wanting to give you more drugs. 

    • misdiagnose
      misdiagnose suesing

      Posted

      Suesing, I think many of us find that any exertion one day will knock us out for the next. Certainly our body is an incredible miracle designed to be able to cope with such stresses. There are some good relaxation technique online. Youtube is worth a good look. By relaxing, we are able to deal with discomfort and pain better. You are at a very difficult dosage. Anything beneath 7mg is thought to need extremely slow reductions to give the body time to start producing its own equivalent. Best wishes at this point, and dont forget to take it easy.
  • artie50
    artie50 misdiagnose

    Posted

    Hi I  been on prediilone since July 2014 for GCA my symptoms got bad after i got to the lower dosage when weaning off them, Im now on 2mg side effects being sleep interuptions, losing weight, soe vison problems but i believe this to be due to lack of proper sleep.

    This is far the worse I have ever felt my doctor wanted me to increase but there is no way im going back to hell with these evil tablets, so i struggling on and hopefully in 5 weeks time when I finish them I should be better. but bear in mind you got to be very strong willed to fight the sside efffects, Im 65 now and its taking all my energy, I get mood swings pains in the head, tender scalp, my doctors says it side effects I just hope she right.

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