Last reply 6 years ago
Steroid Psychosis

I had a horrendous relapse in February that left me bedbound within a fornight and in constant agony for more than a week, as things improved physically, they deteriorated mentally and long and short of it, I had to be sectioned. I was in a psychiatric hospital for a week and a half and had to spend the next 2 months on anti-psychotic medication. Physically things are much better but mentally I’m not coping too well with depression, I have a long history of depression but this time it feels different and I wonder if it’s related to damage? I feel changed after the steroid psychosis, has anyone else had this?

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6 years ago

I have no idea but you should be able to get help and advice from your neurology department. Your MS nurse should be the first port of call – after all, depression is a well-known feature of MS and they have a lot of experience in dealing with it. If your neuro team isn’t helpful enough, I would consider changing to another team! I would have thought that a good neuro dept would be following you up very carefully – doesn’t sound like it! Remember you have a right to be treated anywhere in the country! Good luck, anyway.

6 years ago

I’m from Glasgow and deal with the southern general, maybe time to change! I was only properly diagnosed a couple of weeks ago but had a lumbar puncture which “suggested” MS 3 and half years ago after having internuclear ophalmoplegia and have had optic neuritis in my left eye for three years. I was told nothing had shown on MRI’s before but when I last saw my neuro after an MRI in March I have 5 lesions and as it turns out had two very small ones in a 2010 scan. I saw my neuro last August with night spasms in my legs that were waking me up and he just said he could put me on interferon beta but the side effects would probably be worse than the symptoms I was experiencing, still with no diagnosis. I only got a contact for an MS nurse when I was having that relapse and when I spoke to her for the first time on the phone she was none too pleasant, she gave me a number for a rehab team and made no arrangements to see me, I felt pretty abandoned. Is it usual to be left that long in the dark?

6 years ago

Hi was sorry to hear whats been happening to you lately.

Fortunately I have not had such a bad experience as you on the steroids but they do send me either on a manic high or low ( i also have a history of depression). My ms nurse said the clue was in the name in that they are mega dose steroids. I have had counselling over the years on the nhs and i usually book to see my nurse from clinical psychology for top up sessions to help keep thinking straight and keep the mood swings/depression at bay so its managed more and my mental health doesn’t deteriorate too much. Unfortunately due to nhs waiting lists i have to pay for this privately as we aren’t given 3-9 months notice each time we have a relapse which is the nhs referral time around here and i wouldn’t be guaranteed the same psych nurse which i have had for years which defeated the object really!!
So you are not alone in this and speak to your ms team for additional support and discuss whether steroids are the right way for you when in relapse as the benefit of using them needs to outweigh the repercussions and if so what additional measures can be put in place to help you. hope this helps x

6 years ago

Thanks Becks. Was diagnosed on the 17th April and told I’ll never be given steroids again, that there are other treatments they will offer me in future for a relapse. (I was given steroids in 2009 and I was fine) I was also told I’d be starting Copaxone as soon as, and I’d be getting an appointment with an MS nurse to show me how to inject, no word since then! I’ve been followed up by a psychiactric team in Glasgow pretty closely but not so much as a phone call from an MS nurse.

6 years ago

I also suffered from steroid psychosis. I am Bipolar and was already on med, but this sent me over the edge . Almost ended up hospitalized, but a change in medication helped me. It took me months and some heavy duty meds , but I was finally able to level out. I could feel a difference from my usual mental problems. I just did the best I could by realizing what was going on . I hope you are feeling better now. I think I would rather go through another flare up then taking steroids again. hopefully there will be another option if it gets to that.

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