Anxiety side effects

[Lellylam]

I notice no one really mentions any anxiety from pred. It has caused teriible psychiatric problems for me

[SheffieldJane]

It may feel like that but we do talk about the anxiety that particularly occurs in the early days of taking Pred. It sounds like this has affected you quite badly. I hope you are receiving informed care for this side affect. How exactly is it impacting on your life? Others will then be able to share their experiences with you. It can be a horrible symptom.

[Lellylam in reply to SheffieldJane]

Hi, it has completely ruined my life. I was taken off pred after 5 months as symptoms so bad. That was 8 months ago and still feel the same. Prior to taking pred I had a good life, good job. Now can’t do anything. They seemed to think it triggered an anxiety disorder, so am currently just winging it with the pmr as can’t take pred again

[SheffieldJane in reply to Lellylam]

I am so sorry that you are going through this. The pandemic will have made things much worse. You should be receiving urgent treatment as a matter of priority. Do not suffer in silence.

[Lellylam in reply to SheffieldJane]

Thank you and yes I have been receiving treatment but nothing is working

[DorsetLady PMRGCAuk volunteer]

Actually it is mentioned quite a lot - and you may find quite a few post if you type ANXIETY into search facility- and then filter replies to My Community. Have you been offered any help from Doctor? If not, please ask particularly as you still have it post Pred.

[PMRpro Ambassador]

It is talked about - but perhaps the lack of general discussion indicates that it isn't a very common problem and when it does crop up there is a specific thread like yours - that then disappears after the discussion because another 50 posts are made and it ends up way down the list of over 24,000 posts! I think in the last year there have been perhaps 4 cases of such severe mental health effects as you describe.

One lady with GCA was really ill and kept in hospital after psychotic episodes. I think they switched her to methyl pred and that was better for some reason, Then I think they used tocilizumab to get the dose down and by the time she was below 8mg she was about back to normal.

I had 5 years of PMR without pred because it was beyond my GP to recognise it. I was never totally without pain in that time but I did manage to continue working - I was a freelance translator working from home which wasn't too bad. But it wasn't until I took my first 15mg of pred I realised how much it had impinged on normal life - though I did manage to continue skiing ...

Do tell us how you are coping and maybe some of us can suggest things that helped us before diagnosis and pred.

[PMRpro Ambassador in reply to PMRpro]

Just to add I checked the case I mentioned, most of which I and her daughter carer discussed privately for fairly obvious reasons - I was right, she did far better on methyl pred and tocilizumab got her off and back to normal. I seem to remember there is something in the medical literature about the successful use of tocilizumab in patients with psychiatric complications that suggested it also helped the psychiatric condition,

[Marijo1951]

There are more than 80 acknowledged possible side effects of pred and I'm sorry to hear that you're suffering one of the rare but particularly nasty ones. When I was first diagnosed and given pred (60 mg as I had both GCA and PMR) my rheumatologist warned me that there was a small chance that it would cause serious psychological symptoms and that I should seek help immediately if that happened. I hope all her colleagues give the same advice, as it must be terrifying to find oneself suffering from anxiety on top of everything else and not be aware of the reason for it.

[Kath567]

So sorry that it has affected your life and hope you will find something that can help. Anxiety is getting pretty difficult these days for me. I struggled a bit with it prior to prednisone but it’s become even more so with the pandemic, lockdowns, work and health issues. One therapist said I developed PTSD after the prolonged months of severe pain, and maybe part of another autoimmune condition I have. I always feel in fight or flight mode. That’s my story, thanks for sharing so others don’t feel so alone. Not sure if it’s prednisone in my case as I am down to 4 mg. It’s an awful condition to live with.

[Lellylam in reply to Kath567]

It really is and has effected me so badly. I feel very bitter about it as it really has ruined my life and I was not suffering before steroids. I was 61 when I got PMR which I feel is quite young

[PMRpro Ambassador in reply to Lellylam]

I'd say 60+ was probably common - I was 51 when the symptoms started and I am not alone.

[piglette in reply to Lellylam]

I have had some nasty side effects with pred, but without it I would be in a wheelchair by now or taking a one way ticket to Dignity.

[Twopies]

I’m extremely medication sensitive. In the first month on pred, I ended up in er because I thought I was having a stroke. They said it was a “panic attack.” (I don’t have them). Another doc said, “prednisone drives some people crazy.” As I tapered down, I got better...but evidently I couldn’t handle 20 mg, pred.

[Rose54]

Hi I have just recently gone back up to 15mg a day and the anxiety kicks about 2 hours after taking them .

Tingling ,and then the anxiety starts my heart feels as if its racing and I feel as if its all spilling out of control .

Comes and goes but better as day goes on .

I find doing something helps so a computer game, reading ,watching TV ,Meditation helps.

I try not to go out when feeling like this as I find I cant judge crossing the road safely.

I do Yogi deep breathing reminding myself I am in control and I can feel that anxiety slowly goes.

[MrsNails in reply to Rose54]

Rose, have you ever tried splitting your dose? I’m not a fan of it for me but in your case it may ease the anxiety 🙏🏼

[Rose54 in reply to MrsNails]

Thanks But splitting doses would not work for me

I have problems with Chronic Fatigue at night , any meds I need to take at night need to be taken about 6.00pm or I go to bed without taking them .I fall asleep and nothing or no one can wake me up .

I have worked with lots of people who suffer from Anxiety so can manage it at present

5 years ago when starting on Preds had the same problem had meds to help but thay made me feel so hung over I was better with out them .

PMR is defiantly the illness that keeps on giving .

Hope you are feeling better ?

[MrsNails in reply to Rose54]

Worth a thought 💭 glad you can deal with it though 🙏🏼

Yep, lm hanging in there, increased MTX by injection & hopefully the tiredness will decrease as l get used to it.

Will write a post on latest update in the morning!

Keep Safe & Well Rose xx

[Coffeebeans]

Hi lellylam

I can relate to pred causing anxiety as it has affected me too but not to the extent it has you. I do hope your rheumatologist is working with your doctor's to find a solution that manages the pain in a better way. There are some alternatives out there that may be suitable although your reply to sheffieldjane doesn't sound promising yet.

I'm so sorry this has affected you so badly though, this year has been tough enough.