Coming off prednisolone

[Karendeena]

Hi all, I gave tapered so so slowly and after almost 3 years I am off the prednisolone for about 3 weeks. I was on half mg every other day then half Mondays and Fridays, then stopped.How long does it take to get some normality? I wake at the same time every morning with anxiety. Yes, I have some real family problems with a 95 year old mum and a brother living with her who has severe health anxiety having had 4 mini strokes, earl stage Parkinson's and now a bladder tumour. Having said this, I still think some of this is withdrawal symptoms, it's weird, same time every morning but doesn't occur if I get up to the bathroom earlier, it happens around 5am.

I don't think the PMR is back although my muscles are weak as proven working at a horse rescue wheeling barrows and lifting water buckets etc. my arms and shoulders get sore.

Would like to hear how others have coped/recovered, thanks.

[DorsetLady PMRGCAuk volunteer]

Would say the anxiety could well be related to your adrenals.. it can take up to 12 months after stopping the Pred for them to be fully functioning.

Normal aches and pains of life are also are more noticeable, even small doses of Pred can mask them… but do keep your eye on them.. just in case it’s still PMR bubbling along.

[SnazzyD]

My adrenal function wasn’t reliable for a good 18 months after stopping Pred. However, don’t forget the impact of the slow drain on one’s well being of drawn out family situations. There’s not a lot one can do about it but the least we can do is respect the fact that our poor bodies are dealing with it and should be afforded some care, rather being made to just ‘get on’ because we want them to. Muscular recovery can take an equally long time and unfortunately the focus is so much about ‘being off Pred’ being the end point, the next slow steps feel like a relapse. Do be mindful that some of this might, just might be PMR waiting in the wings. Recovery can be not getting back to what we did before as if nothing has happened but having to accept that things have changed and will keep changing and that we need to listen to our body more than ever. That can be both disappointing and liberating.

[waltztherapy in reply to SnazzyD]

Indeed. So thought provoking and offering hope, as always on this forum. Confirms that we need to always be mindful. Thanks SnazzyD.

[potterylady in reply to SnazzyD]

Good words of wisdom SnazzyD. Thank you.

[Polygolfer]

well done to you! I also reduced by 1mg every six weeks then even slower after 1mg and also had some withdrawal symptoms but under guidance of Rheumatologist adjusted physical activity and most withdrawal symptoms are gone.

Good luck to you and congratulations!!!

[PMRpro Ambassador]

It is said your adrenal function can take at least a year or more to really settle down to being reliable, And to be honest - that lot is enough to make anyone anxious!

I think too many expect "no pred" to equate to "not needing to recover any further" - a bit like some who are discharged from hospital think they can go back to normal life immediately only to discover that you don't do much in hospital but suddenly even getting up to fetch a cup of tea or a snack takes more effort than you thought or that you have to deal with stairs at least a couple of times a day and they can be exhausting!

PS - well done!!!

[Karendeena in reply to PMRpro]

Aaaaaarh thanks PMRpro, I still have everything crossed 🤞

[Grants148]

Hello Karendeena ,you have done well to be coming off the prednisolone ,l am still on 2mg. after over six years . I did not try to go down from 5mg. throughout the pandemic because of stiffness in my neck and the pred was also helping to prevent asthma . You mention early morning anxiety and l have found l wake up around 5am and cannot sleep because of things going around my mind , often things l am anxious about . I can also become anxious very easily and find it hard to cope with problems calmly . I have never linked this to the prednisolone but it could be quite likely because a higher dose can cause brain fog and steroids are a powerful drug and lowering them can also affect adrenal function . I am sorry l cannot add to this but l am sure there are others on this sight who could help you and explain things a bit more ,especially the admin ladies . You seem to be doing a lot of heavy lifting and it is amazing you have not had a flare up . I am sorry you are going through such a worrying time regarding your mother and brother ,take care x

[Karendeena in reply to Grants148]

Thanks very much. My GP told me 3 years ago she needed me off the prednisolone as it was affecting my mental health (one of the side effects I believe). That didn't work at the time as the disease was still active. I have always been an anxious person but this got considerably worse when taking the steroids. As my GP said, prednisolone is marvellous for what it does but comes with a shed load of side effects.

[potterylady]

Hi Karendeena, that's a lot of family stress. I know how hard it is to handle sick close relatives. I really have to practice my codependent skills during those times. I have to somewhat detach and realize that it's their journey, not mine. Alanon helped me also Melanie Beattie's books on codependence. I'm not saying that is your problem, but it was mine. Also, meditation and journaling helps.

[Karendeena in reply to potterylady]

Hi there, thanks for this. Yes, I am struggling as I don't have any other support. No other siblings or children so I feel I am looking after two children,it's exhausting. My GP has told me to step back and detach, especially as mum has become aggressive towards me and calls me all sorts of names and can lash out at me. She was my best friend all my life and a very happy lady who didn't have a bad word for anyone. It's not dementia according to all.the tests although her memory is poor. My GP and Occupational Therapist say she is manipulative, which is very hard for me to accept.

Please give me the titles of those books and thanks for your concern

[CathyMeg in reply to Karendeena]

Gosh you are dearly with a lot of emotional stuff. I would say get all the help you can both physical and mentally. I am coming out of an extremely stressful time of relocating and family problems and now husband having heart bypass this week. I had a massive flare. But getting back now and have a great Psych who has helped in just a few sessions.

Re the waking at 5am with racing stressful thoughts I have found a few of the meditation / sleep aps on my phone have been invaluable. They refocus the mind and let me fall back to sleep.

Hope this helps even a little. ❤️❤️

[potterylady in reply to Karendeena]

Dang, I totally understand. My mother also suffers with aggression and she has rage. She has Borderline Personality Disorder and Dementia. She thinks I am the enemy. My poor Dad cares for her and is afraid of her because of her abusive rages. Also, I have a son who has Schizoaffective disorder and was an alcoholic for 20 years. He is 38 now. I have a daughter who was bed ridden with EDS for 9 years. My youngest daughter has BPD like my mother, but is doing amazing due to the counseling we have provided her for the past 8 years. When my daughter was bedridden with EDS, she was also prescribed "Benzos" and Opiates because the doctors couldn't figure out what she had and said it was all in her head. I had to handle/help her while she was detoxing from those drugs which was hell on earth. With EDS, she has gastroparesis, paralyzing of her stomach and intestines. She is better now--long story! During these horrific times, I read every book I could get my hands on to help. This was before EDS was well known, and before mental illness was talked about openly. I attended Alanon for support for my son's alcoholism but I found that it helped me in dealing with the illness and mental problems of my other kids.

The Codependence book is called, "Codependent no more"

The BPD books is "Stop walking on Eggshells" or "I love you don't leave me" There are many more great ones.

"Dementia, the caregivers guide to Dementia. Practical advice for caring for yourself and your loved one"

For me, reading or listening on Audible, basically learning about what I'm struggling with really helps me to understand things. I wish you the best and will be praying for you. xoxo Jill

[kuiper]

Hi Karendeena,

Like you, I have had a very slow taper after 4 years of Prednisolone for Temporal Arteritis, eventually getting down to zero at the beginning of December 2023.

Since then I seem to have had a variety of symptoms - digestive upsets, itchy skin, migraine-type flashing lights and painful arms, shoulders and hips. Thankfully no anxiety now although I did have that early morning anxiety whilst on the Pred - also linked to a lot going on in life.

It is disappointing when you think you are about to get back to normal life. I'm taking the view that it's a combination of adjustment plus the reveal of underlying stuff that had previously been masked by Pred. Personally, I find that exercise helps, albeit rather painful I always feel better on the days I’ve been to the gym. I’m currently trying to rebuild my arm and leg strength, badly reduced by the Pred!