It's nearly 12 months since I was diagnosed with PMR. I was put on 20mg with no warnings of side effects and left on that dose until an appointment with a rheumatologist three months latter, with no direction or advice about tapering during that wait.
I'm currently taking 9 mg but getting to that dose has been traumatic. The rheumatic pain completely disappeared within weeks of starting the pred and has not recurred since. My problems have been a completely disabling fatigue and more importantly a profound effect on my personality with bouts of extreme depression.
My rheumatologist advises that I need to continue to taper by one mg/ month and that as the dose reduces , so will the fatigue and the depression. Despite daily meditation, I'm finding it increasingly difficult to deal with the depression. I've been prescribed antidepressants by my GP, but I'm reluctant to take them. My main problem is that I know that I must decrease my steroids but each time I taper ( I'm using the very slow method, spreading the 1mg drop over 1month) the drop will trigger a period of extreme depression.
The steroids are causing the depression but steroid withdrawal makes it worse. I wonder if I should continue the slow withdrawal, maybe accepting the antidepressants to help me through or try 1mg drops and increase the rate at which I'm tapering to get off the steroids more quickly? I would appreciate any advice.
Yes I do feel quite sorry for myself at the moment but I try to keep a saying in my mind that my mother was fond of, "this too will pass!"
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Toolmart
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I'm so sorry that you've been put through this experience. What I'm wondering is whether the long period at that relatively high dose of pred caused a deficiency of some nutrients? I understand that pred causes our bodies to lose magnesium and perhaps other minerals as well, and its interference with calcium metabolism is well known. Any deficiency could cause changes in mental well being, not to mention the effects of having PMR in the first place.
I️ java bouts of bad anxiety in the morning as well as bouts of depression. I️ am down to 15 mg prednisone. Feel like it will take forever to get better. I️ am taking it for PMR.
This too will pass, yes it will, but at the rate PMR chooses, and not by a speeded up reduction. That would probably back-fire and lead you to higher doses again.
Yes the depression may lessen as the dose reduces, but depression and PMR go hand in hand. I know some suffer more with psychological problems on pred. Likewise the fatigue, it’s part and parcel of PMR. You need to learn to pace yourself and rest, rest, rest! Too much activity will wear your body out and make the PMR worse. Aim for 50% of your norm, and consider yourself lucky if you achieve it.
Are the steroids truly causing the depression? Or is it PMR and a reactive depression? Similar to grief for the lifestyle you have lost, and currently feel you have no control over. Is it possible that you have reduced quicker than the PMR has receded? What would happen if you increased the pred slightly?
Whether or not you take the antidepressants is your choice. But personally I’d check other parameters first I.e. pred dose, rest, level of activity. Might help to check your diet too.
The disabling fatigue is part of PMR for many people - not just the pred, or not even the pred. So I wouldn't be too sure the pred reduction will help that. Sorry.
And I echo Soraya's comments. It could be the PMR or it could be the pred - or it could be the loss of YOU. I would seriously consider the GP's offer of pills in the short term - but also consider looking for talking therapies. The GP MAY be able to help - hope springs eternal - but bereavement counselling is as applicable for chronic illness as any other reason.
As for getting off more quickly - then you risk the PMR returning. The pred didn't cure anything - it is managing the symptoms to allow better physical QOL. Mental QOL is another matter. But having had 5 years of unmanaged PMR pain and disability, believe me, that causes depression too.
Hi Toolmart and welcome if this is your first post!
Your system has been messed about by being left on such a high dose for 3 months. It is reprehensible of whoever was in charge of your care. It makes it very difficult for you to read what's going on in your mind and body. It must be very hard, if not impossible to work out what are PMR symptoms ?what are Pred side effects? What are the symptoms that stem from medical negligence?
You have my deepest sympathy, depression is the worst thing. I had been depressed for ages before diagnosis with PMR. I spent a lot of money on a psychotherapist for a long time. My first dose of Pred lifted my depression and 19 months on I am still not depressed, in spite of challenging times. I get fed up, but not that huge grey blanket that cuts you off from everybody and everything looks bleak.
Unless you can trace the depression back to an insoluable situation or unendurable stress,, I am guessing that it's a kind of chemical imbalance . Your body needs a period of stability, rest and recuperation, certainly not forcing yourself off the only drug we've got, too quickly. I am guessing that you need more Pred ( I know) and a much slower taper. No taper should be traumatic!!! Try to make Pred your friend rather than imagining that each time you take it you are going to feel worse. Don't push yourself physically or mentally, you need time to heal, lots of rest and sleep, and peaceful pass times. Stick with us. There are a lot of great people on here, all fighting the same battle. Share how you're feeling. You are still you, just more bad tempered and rather blue at the moment. Your mum is right " this too will pass".
I pulled up the DSM-V Criteria for Major Depressive Disorder to post so that it might help determine if you are suffering from the disorder, or 'depression', which we all experience at some time in our life. HOWEVER, when reviewing the diagnostic criteria there's a "NOTE: Do not include symptoms that are clearly attributable to another medical condition." Ok...so looking at these won't help as clearly we have a serious medical condition.
But I scrolled through them just out of curiosity. One must have 5 out of 9 criteria to be diagnosed with Major Depressive Disorder. As I'm reading them, I'm thinking to myself "got that".."got that"..."got that" to questions like Fatigue or loss of energy nearly every day; Insomnia or hypersomnia nearly every day; Diminished interest or pleasure; weight loss or weight gain; Depressed mood most of the day; diminished ability to think or concentrate, etc.
I'm certainly glad that I saw that NOTE because otherwise I'd have just diagnosed myself with Major Depressive Disorder, which I know I don't have -- having suffered it in the 1990's. I know these symptoms are attributed to the GCA. BUT, it does tell me that all of these 'depression symptoms' that we can possibly experience with Pred is a serious drain on our quality of life and as they are the criteria for MDD.
When I did have Major Depressive Disorder, I saw a therapist besides a psychiatrist for med management. I agree, with PMRpro, talking with a professional was well worth the money. She made me agree to 'get up, get dressed, and get out (leave the house) each day'. I did -- many days I went to the zoo. I'd sit and watched the penguins and many times cried. (The zoo workers must have thought 'crazy woman is back again'.) I'm wondering if this would help you, also. I know it's work to drag oneself out of the house, but a change in scenery even for even a little bit can make a big change in the mood.
Also, I love music. When I'm feeling that 'why me'?, 'my life is never going to be the same'. dark thoughts, I put in earbuds and pull up music that I love. Music can really change my mood. Also, I color. Yep, crayons, markers, coloring, book, the whole "i'm 6 years old experience" only with coloring books that are for adults. I've been volunteering at a nursing home every Saturday for the last 3-1/2 years and we color. I've seen firsthand how coloring has helped the residents with their depression and anxiety. So, I pull out my personal coloring books and color at home when I start to feel blue. I know it sounds childlike and simplistic, but it does work for me.
I guess what I'm trying to say in a very wordy way is that you have every reason to feel depressed. It's hard on the psyche to have to change one's life in such a dramatic way, deal with pain, uncertainty, fatigue, etc. The question is what steps can you take to help offset this and bring joy back in to your life? Look for things (books, music, puzzles, cooking, movies, etc.) that have brought you joy in the past and make sure you incorporate them in your day-to-day life. Speak to a counselor/support group. Consider the meds. Know, too, that many anti-depressants won't kick in for 30 days so you won't see immediate results.
Be kind and gentle to yourself. This, too, will pass. It really will!
Hi Toolmart...my sympathies regarding the depression and personality changes...😱.
My suggestion is to accept the antidepressants for the next period of time. They can be very helpful in getting some balance, and it sounds like you need it.
Read back through the archives for posts from others who have traveled this road before you. You will find much to ease your concerns, and a great deal of information to help you understand what is going on.
Also, remember, this is a life-changing disorder...but not life threatening.
You've already had lots of helpful info, and I hope that you find it useful. I have.
Just wanted to say that I also started on Pred (40mg a year ago) with no mention of what the side effects might be, or what to expect as regards the course of the illness (GCA). So, as debilitating as it is, it came as a great shock, and was not easy to come to terms with. Thank goodness for this forum, which is an enormous help as a source of information and support. Even just to know that you are not alone is a great help.
Most of us experience the disabling fatigue (DF). I still don't understand why GPs or other medics don't warn us about it, or give advice from the start, about coping strategies. That alone is enough to get you depressed, especially if you're not expecting it and don't know how it might go. Lack of medical interest or attention, which seems common, is exceedingly unhelpful. Luckily you can find lots of info about the importance of resting and pacing, on this forum.
I'm also currently on 9mg, and have also found getting to this level fairly traumatic. My main reason for continuing the Pred reduction without more delay than necessary is that I have steroid-induced diabetes, which I hope will improve as the steroid reduces. So each reduction involves a 'cost-benefit analysis'. I know it will pass - it's just getting through it that's the problem, isn't it.
Tentatively going down to 8.5mg. Thought that was going well for a couple of days, but have hit a bad patch today - v tired + all my old aches seem to be coming back. Contemplating how to proceed. I have also found that any steroid reduction 'wiped me out', though I wouldn't call it depression (spot the difference!) However found that by going v slowly I could manage it. Eventually. V hard to get anything done, though, and find that people tend not to understand what the problem is, which doesn't help.
So, sending you 'moral support' and virtual hugs, and best wishes for finding a manageable way forward.
Have you tried reducing carbs to help the diabetes problem? One lady has got her Hba1c down from 6.5% to 6.0% to her doctor's delight. Another lady has commented on the forum today that she had managed her Type 2 diabetes for years simply but cutting carbs.
Do remember though that however slowly you reduce - you will not get below the minimum dose required to manage the amount of inflammation being created each day. It isn't anything you do "wrong" - it is just so.
Thanks, PMRpro. I have taken on board all your excellent advice about slow reducing, and wouldn't dream of rushing. But really hope my minimum dose will be lower than what I'm currently on.
I also took your advice about low carbs - right from the start. But despite a minimum carb diet the diabetes, though improving, has not nearly gone, and I'm still on Repaglinide, Alogliptin and Dapagliflozin. Stubborn! But I did reduce Repaglinide from 4 times daily to 3 times, quite a while ago, and am wondering if I could soon reduce to twice daily - so it's not all bad news. And I'm gradually beginning to walk a bit more, which is helping. Next bloods due in 5 days - fingers crossed for a good HbAic.
Just to say I had paralysing depression, anxiety and fatigue most of last year. I came down from a high dose (GCA) to 20mg by the January (2016). It was from then on I experienced it and I believe it was all steroid withdrawal symptoms (from the high dose). Some get the depression when they start the pred but a few rare cases get it when reducing. I have never known any depression like it and hope never to get it again so you have my deepest sympathy. It did right itself eventually even tho I carried on slowly reducing 1mg per month and now from 10mgs I am doing 1/2mg slowly per month. I have been free from the depression and extreme fatigue for a year now. Occasionally it threatens, fleetingly, but doesn't come to anything and I know it's because I have done too much or had to deal with too much stress. I did try CBT but I think my body just needed to sort itself out and it did thankfully. All the very best cc ☀️🤗☀️
Dear all, many thanks for all your replies. Your generosity, compassion and empathy really is much appreciated. Although your advice varies it has helped me decide on what I know and I think knew is the best way forward. I'm going to start taking the antidepressants, which I understand may make me feel worse before eventually helping. (I had tried a different one a few months ago which I had to stop after only a few days due to bad physical side effects, apparently the Prozac based one is less likely to do this) Also I'm going to continue to taper but even more slowly and hope that this reduces the severity of the bouts of depression.
It's great to have a solid plan and a way forward. I'm so glad that I found this forum, a very handy way to get that much needed moral support and practical advice from fellow sufferers. ( I have found the meditation very helpful btw and for anybody who hasn't tried it, you can download free apps which offer guided meditation ....I use one called Insight Timer)
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