I’m 44 and was put on Prednisone, 20mg, 3.5 weeks ago for suspected PMR. My mum also had PMR at a young age of 42. I’m still waiting for my rheumatology appointment, but meanwhile the GP prescribed steroids that are working well, where all other pain medication was not. So the joint pain is under control.
We started tapering my dose to 15mg 5 days ago. Since then I have been experiencing terrible mood swings, manifesting mainly as massive anxiety. Stressful situations that I would normally find within the realms of ‘manageable’ are completely overwhelming me and I feel completing unable to regulate myself. The anxiety escalates very rapidly.
This is not ‘normal’ for me. And tonight I felt so concerned I almost called 111. I’d be grateful to hear from others who have experienced this and have suggestions on what to do. As it’s a Saturday I can’t reach my GP.
Thanks 🙏
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Jaybird22
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Prednisalone can definitely cause anxiety. I experienced it in the early days of PMR but it settled down after a while, before my relief at finally having a diagnosis had worn off. I think your taper from 20 mgs to 15 mgs is a bit brutal and is probably exacerbating your experience of anxiety and feeling unusually overwhelmed .. in FAQs on here, there are recommended tapering methods. They are gentle and effective and tend to stick. We should never taper more than 10% of our dose, therefore going down by 2 mgs might be better for you. FAQs is accessed on this page. Let us know how you get on. You shouldn’t have intolerable anxiety and I would consult my GP if this is your situation.
Hello there, yes Pred can do this and I found it took a few weeks to catch up with me. It can also happen when you have steroid withdrawal because Pred affects every bit of you and just as you adjust it is taken away. This can be made worse by big jumps. If you went from 20mg to 15mg that is rather big and normally the guidelines say drop by 2.5mg. However that can still be too much for many and 1mg might be better.
I found that Pred made me incapable of being able to watch anything emotional on tv, even cheesy stuff, and I had a very short fuse, racing mind and anxiety to name a few. I had to keep telling myself it wasn’t me. If you are not sleeping properly, as is often the case, that won’t help either. Also, are you resting or getting on with life as normal?
Thank you to you all for your replies, I’m grateful and it is helping me feel calmer to know that this can happen to many. I will check in with my GP on Monday to discuss dosage, and in the meantime I think I may need to take it easier…
I’ve been feeling quite ‘high’ in the mornings after taking my 15mg, and so I’ve been blitzing all the physical tasks I was unable to do in Nov/ Dec due to being in terrible pain. I’ve also been trying to walk a lot as I’m feeling anxious about the potential weight gain side effect, and also making up for feeling so inactive for a few months pre-pred treatment. My days are very ‘productive’. I struggle to get to sleep but once I’m out I am sleeping very well.
I appreciate the knowledge and support of this community, thank you…
Ah yes, a common reaction to having been in pain and then being jacked up on steroids, mad task completion!
Regards weight and high blood sugar, start a very low carb diet now. Pred requires more carb restriction than the normal kind of healthy diet. You can’t rely on hard exercise as your muscles are not so tolerant at the moment which isn’t always immediately apparent. Saying that people here have found a walk after eating really helps with blood sugar regulation.
I haven't had extreme mood swings, but have waves of anxiety that I have learned will pass. I'm trying to do an anti-inflammatory diet, though it's a challenge because where I live, meals are included and it's not the healthiest menu situation.
Hi Jaybird22! I was advised to go from 20 to 15mg pred, too, but have gone for 17.5 (haven't told my Rheumy, yet!) This is precisely because I am trying to avoid the extreme mood swings - weepiness, bad temper - that I experience less often as I reduce slowly.
Myself as well and add anxiety attacks to it. Haven't told GP yet. They had me reducing 2.5 mg per week. Started at 20, now at 14. (20, 17, 15, 14). May try 13.5 this week. According to her schedule I should be at 12.5.
Like SnazzyD, my emotions were all over the place on higher doses of pred and it seemed that I’d had a whole personality change. I wasn’t aware of any connection with reducing dose: this was before I found this forum. I could hear myself practically growling in response to the most innocuous remark and couldn’t control myself. It’s what we call, ‘Roid Rage’ and will pass, I promise.
Yes unfortunately for most us this can happen. I’m currently reducing from 2mg to 1 3/4 mg (after 7+years) very slowly and have feelings of being overwhelmed. Just like SnazzyD I find it very emotional watching certain things on the TV.
I understand your frustration but it’s important not to overstretch yourself when particularly when reducing.
Any concerns then a visit to your GP would be in order.
"Overwhelmed" exactly describes the experience. I was not an emotional person before pred, but cannot control tears when watching or even reading about injustice and heart-breaking stories of inhumanity to other humans and animals. But I feel compelled to keep up to date with what is happening in our world, and much of that is unpleasant and frightening currently. On 17.5 mg pred atm. Will continue slowly despite temptation to reduce any faster.
I had a too big reduction from 15mg initially and hit the buffers. Anxiety, which steadily increased with stress and with anxiety about the anxiety. I put it down to the huge loss I was experiencing at losing my 65 years of fitness all of a sudden and not being able to get help when I needed it, away over Christmas/New Year 200 miles from home in west wales….. I struggled for a month before going back up to my initial dose to get things sorted. I cried at the drop of a hat (now it takes a few hats). Gp said it wasn’t the reduction (as my blood test was normal after being home for a week and far less stressed/anxious) but that I’d had a virus! But she agreed with me to go back up ro 15mg and then to taper by 1mg monthly.
You could always reduce todays dose, if you haven’t already and see if it helps , until you can talk to your gp. And just ring 111 if you’re feeling overwhelmed.
I had Temporal arteritis some years back and I was on 75mg Prednisolone it did the job but with lots of issues in-between. I then was reduced over time to 5 mg but was on them for 2 years at that rate. when it was decided to come off them, I was reduced at .5 mg a week until was free of Prednisalone! A reduction of 25% in one go seems a tad drastic!
I feel your pain. I've been on Pred for 8 yrs. now. At 5mg at present and I still get angry, overwhelmed and anxious about things that before Prednisolone wouldn't bother me. Daily walks helps, for me anyway. Take care
That is a VERY big change of dose by our standards, It would have been far better to go via 17.5mg. 5mg is the step they use in acute use of pred but for us it is recommended that you don't change the dose more than 10% of the current dose. That was 25%.
I actually found that PMR itself led to mood changes and anxiety and my 15mg pred dose improved things. As Snazzy says, they are all factors, PMR, pred, removing pred, and it really does help to not change anything drastically.
I can only back her advice to cut your carbs NOW - how much you need to cut them varies, but removing processed carbs, added sugar and limiting some fruits is an essential. It has been shown that exercise really isn't the key to weight loss - it is what you eat - and that is especially so with PMR. Being on pred isn't a ticket to go mad on cleaning and catching up! It only manages the symptoms by mopping up the inflammation - the actual disease process, an underlying autoimmune disorder, is unaffected by the pred and chugs along in the background and attacks body tissues, Pacing and resting appropriately is also a critical factor - do look at the links in DorsetLady's welcome post,
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