How PMR and / or prednisone affect mood

[Mim11]

This forum is a wealth of information on how PMR makes us feel physically. Can you suggest any links that might speak to the emotional side of the disease and prednisone use. Some days I am at the mercy of my emotions. With gratitude for everyone here😘

[PMRpro Ambassador]

They are things that have been addressed on here in the past - but really it is much the same as for any chronic illness. Pred itself of course does have its own characteristics but people are all different. I don't find pred makes me any different from what untreated PMR did for the 5 years I had it without pred. PMR made me irritable and labile anyway. I had a very short fuse - far worse than now on pred.

ncbi.nlm.nih.gov/pmc/articl...

knowablemagazine.org/articl...

my.clevelandclinic.org/heal...

are just a few of what I found when I searched "emotional effecs of chronic illness"

[Mim11 in reply to PMRpro]

Thank you I will do my homework♥️

[DorsetLady PMRGCAuk volunteer]

This post in under the FAQs - it might help - healthunlocked.com/pmrgcauk.....

But as PMRpro states there are plenty online although not specifically on PMR and Pred.

There are a couple of related posts on Pred and mood swings..this was posted 2 months ago - healthunlocked.com/pmrgcauk...

[Mim11 in reply to DorsetLady]

Many thanks♥️

[Bcol]

Just to add to DL and PMRPro I did found that the higher doses of Pred did make me more emotional, quicker to have tears in my eyes at things I watched or saw.

[Mim11 in reply to Bcol]

Yes I’m at 20 mg again due to a post Covid flare. Tears are always right there.

[jinasc]

Treacle Brain, Dropping items, putting stuff in the freezer which should have gone in the fridge, vice versa, etc etc It does wear off after quite sometime.

[Mim11]

Don’t think I’ve experienced that yet but can feel I overwhelmed by the fatigue and constant achey muscles.

[DorsetLady PMRGCAuk volunteer in reply to Mim11]

jinasc , like me was on high doses for GCA, so agree with her on the treacle brain! , but as you reduce they do improve.

Fatigue and achey muscles is probably due to covid as much as PMR/ Pred…

Hope you soon feel better in yourself. Plenty of TLC required.

[tangocharlie]

My heart goes out to you and I can empathise as I'm in the same boat. I'm constantly tearful, I've been thinking about going to the GP to get anti-depressants but I don't know if they would help or even make things worse throwing another med into the mix, taking one to counteract another. Mood swings, depression etc are a well-known side-effect of Pred especially at higher doses, many of them listed in the Product Information Leaflet (PIL). I was on another medication Montelukast for food allergies and that definitely caused OVERWHELMING depression so I stopped that and things improved instantly.

I'm on a high dose of Pred (22-25mg daily and been on that dose over a year) which is the most likely cause of depression, cognitive and memory problems etc. But I've also had vertigo - balance problems, dizziness, feeling like I'm still rocking and swaying on the sea - for 9 months since going on a short boat trip, which is being investigated to rule out other causes but ENT consultant thinks is probably is Mal de debarquement syndrome (MdDS) which also causes depression.

Add to that after 10 years of PMR I'm fed up of being ill, sick and tired of being sick and tired. And also the strange years we've just lived through with Covid have affected everybody in some way.

I asked a GP about possibly taking HRT a few months ago as that might improve physical and mental health and but was brushed off so I need to do more research on that and see if it's worth persuing. And also how anti-depressants compare.

I'm normally a very positive person and also am very experienced in CBT and mindfulness techniques, but still the depression takes over so easily, it MUST be the meds! I would definitely recommend doing some kind of Mindfulness for Health course, it really helps me live with long-term illness.

I wondered about reporting the depression etc through the Yellow card scheme where you notify side-effects of medications, but I have no proof it is the Pred with everything else going on. Seems highly likely to be a factor though.

[Mim11 in reply to tangocharlie]

Tangocharlie, your words are healing. Thank you for sharing your story. I do believe the prednisone is pulling the strings of my emotions along with the PMR. As with all of the miserable symptoms, sharing them lightens the load. Thank you for your kindness.

[tangocharlie in reply to Mim11]

Yes sharing helps, and mindfulness techniques, for being more aware of how your thoughts affect the way you see and react or respond to things.

[Mim11 in reply to tangocharlie]

Yes you are so right.

[tangocharlie in reply to Mim11]

But if it is physiological or chemical cause for the depression, there is only so much these techniques can do, they are not a cure. You can't tell someone who is depressed to 'snap out of it'. I'd be interested in hearing from anyone who has been affected by depression caused by Pred as to what they found that helped. I'm tempted to ask about SSRI anti-depressants but as I said, don't know if that would help or make things worse by adding in side-effects of another medication.

[Mim11 in reply to tangocharlie]

I completely understand your reservations . You are wise to proceed with caution.

[S4ndy]

I have had depression and anxiety for most of my life. When I started prednisolone for pmr at a dose if 30mg daily my anxiety got really bad. I was already taking Sertraline at a low dose but my GP increased it to 100mg a day. Also gave me 50mg of Amitriptyline too as he felt better sleep would help. As I reduced my prednisolone dose I started feeling better and gradually the anxiety reduced Now I am on 5mg of prednisolone maintenance dose long term and 50mg of Sertraline.

My anxiety is bubbling away still but that's due to other things going on not prednisolone. I've had a couple of flares when I have had to take a higher dose for a short while and I noticed the anxiety and creeps back in. My son and hubby laughingly call it mum's dragon mode! Apparently I am capable of spitting fire. According to them I also have growling Rottweiler mode but mostly I am in Pussycat mode these days lol!

[Mim11 in reply to S4ndy]

Yes, I am on increased prednisone due to a post Covid flare and the anxious feelings rose right along with the flare and the increase in meds.

[agingfeminist]

Just for a different perspective...it is so individual. I have never been affected emotionally by pred (even when on 60 mg for GCA) and it has never affected my sleep BUT it did destroy my leg muscles (muscle myopathy) and 2 and a half years on (and only on 4mg) I struggle to walk a 100 meters....and of course pre PMR I was very active...now that is depressing...and every attempt at the most minor exercise makes it worse. I get deathly fatigue and that is depressing but I am trying to cultivate stoicism and accept what can't be changed. I do hope you find something (non-medical) that helps to combat the gloomies.

[Mim11 in reply to agingfeminist]

Thank you for sharing. I’m hopeful that as I decrease the prednisone and the PMR RETREATS , so will the emotional upheaval.The mind/body connection is so strong.

[Towdy]

HiI was adrenally insufficient before getting PMR and was suicidal on low dose pred each time I tried to reduce to allow adrenals to rekindle. In a way PMr has stopped me trying and despite the pain/stiffness PMr I feel better mentally on 10mg pred. Perhaps I’ll never get off them

[Mim11]

I imagine only time will tell.

[SheffieldJane]

mayoclinicproceedings.org/a...

I hope this works. I think I am overdue some euphoria. You really aren’t the only crazy person who is sometimes a slave to their emotions. Explain to everyone and be kind to yourself, it’s part of your illness and not your fault. My husband daren’t let me loose on the bathroom fitter at present. My normal state is really quite calm and placid, dare I say gentle and kind. Lord knows who this woman inhabiting my body is sometimes. I do try to rein her in though.

[Mim11 in reply to SheffieldJane]

Thank you SheffieldJane! The reining In Can be difficult at times but we carry on. Thank you for sharing. I think we all need more of it in these trying times.

[PMRpro Ambassador in reply to SheffieldJane]

Note the differentiation between short-term and long-term steroid therapy. Euphoria is a short-term effect!

[SheffieldJane in reply to PMRpro]

I suspect that doctors believe them to be more fun than they are.

[PMRpro Ambassador in reply to SheffieldJane]

I think they do! I have to say I have never experienced any euphoria - except that due to not hurting any more!

[SheffieldJane in reply to PMRpro]

I got that too. I was over the moon to be able to walk and stretch, reach and climb into and out of the bath/bed. It is the only effective drug I have ever experienced such a miraculous transformation with. There was nothing OTT about my happiness at being finally correctly diagnosed and out of pain and disability.

[Mim11]

Dad2cue, thank you! Where are you in the US?

[Mim11]

Nice to meet a PMR comrade from my country. I’m in NY

[Mim11]

Glad to meet you too. Look forward to more chats. Be well!

[SheffieldJane]

I kind of sleep across the 24 hours these days in 4 and 2 hour sessions. Grateful for any sleep and the Americans I get to communicate with in uk wee small hours.

[winfong]

I seem to be between a rock and a hard place. Without enough pred, I have all sorts of aches and pains, fatigue, feel awful. If I take enough to counter those, I'm manic, have bad insomnia, and am more than a bit snippy. Sigh ...

[Mim11 in reply to winfong]

Winfong, Rock and hard place seems right!

[SheffieldJane in reply to winfong]

Has this worsened since you’ve been taking Leflumonide or is it the same?My son encourages me to have Chamomile tea in the evenings and it does seem calming and helps sleep, more than a little.

[winfong in reply to SheffieldJane]

That's a good question. I really can't remember. Saying that, tho, I probably would have remembered a difference. So, it's probably hasn't made any or it's been very slight.

I do love chamomile, but I probably need something stronger than that. Alcohol's out because of various conditions and medications, so maybe I'll just have to take up a drug habit.

😉

[SheffieldJane in reply to winfong]

Yes I thought that about chamomile but it really does seem to have a soporific effect. The doctor would probably prescribe Zopiclone. I took it in the past with no ill effects . Lack of sleep makes you feel so overwrought. You need time out from that. I on the other hand seem to have sleeping sickness. So I guess the body tries to adjust.

[winfong in reply to SheffieldJane]

I take trazadone these days. Seems to work great. If I have a bad night or two of sleep, I'm usually so tired I sleep fine. Sometimes, though, the only thing that will work is something that it comes with a prescription. It's amazing, though, what a good night sleep's and reset can do.

[SheffieldJane in reply to winfong]

I agree. It is an effort of will to cope with a chronic disease sometimes - kind of walking a tightrope and not looking down. Lots of self care and avoiding brooding on the what ifs. I had 3 abrupt texts following a so called medical review from a nurse in the GP’s surgery. One telling me that I need to take Statins because I am at cardiovascular risk. The next telling me I am diabetic ( two doctors have recently said it is only borderline raised blood sugar) The next saying that I must monitor and make a note of my blood pressure and if it goes above 150/95 to get in touch so that they can raise my medication. So apparently, I am my own general practitioner now. It just smacked of covering their own backs. It plunged me into a black depression until I rationalised my way out of it. There is zilch support from the surgery. The U.K. primary healthcare is in crisis and it’s scary.Sorry for the vent.

[winfong in reply to SheffieldJane]

Multiple chronic illnesses (& with one of those being rather a mystery) really force you to be your own care manager.