Depression from Pred?: Can I ask if anyone has had... - PMRGCAuk

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Depression from Pred?

powerwalk
powerwalk
47 Replies

Can I ask if anyone has had depressions from long-term prednisone? I feel beyond deplorable - I cannot even speak to people I am so bad. I feel very unwell in myself - and its not lifting. I am on 4.5mg - have been stuck there for about a year! Tried reducing but it just doesn't work - the fatigue renders me almost useless. In fariness I've never felt "right" since I went on this medication but at this lower end of the scale it all seems to have turned into this horendous depression. I cried in bed last night - I have not done that for many a long year!!!! I know I have been plagued with UTIs and antibiotics so thats probably not helping. Any advice is very much appreciated. Thank you all.

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SnazzyD

Hello, that sounds rotten. This may not be from Pred but from adrenal insufficiency. If you are one of those whose adrenals don’t get going, it would make you feel like this, easily. Before my adrenals kicked in, I felt so low and tearful, achey, wobbly, I’ll, tired and generally not fit for purpose. It was worst around 7mg, improved at 5ish and went at 4/3.5mg It was like a cloud lifted when they started. Have you had a Synacthen test to check the function of your adrenal axis? I would hope with your symptoms a doc would grant it.

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powerwalk
powerwalk
in reply to SnazzyD

I asked my GP a while ago about that - and she said it was only needed "if you are on 7.5 or more for a long time" - whatever that means. In other words she didn't think I needed one!!! I feel I'm going backwards!!

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SnazzyD
SnazzyD
in reply to powerwalk

Haven’t you been on higher doses for more than a month? If so, your adrenals may have turned off then but have not switched on again. Try another GP and really tell them how you feel? Take an advocate! This may not be the problem but given the history ought to be ruled out properly.

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powerwalk
powerwalk
in reply to SnazzyD

I got the distinct impression she meant - a year or so being long-term. Actually she asked me the other day was I "off" the steroids yet!!! Eh no I'm not!! Its only been two and a half years. At least she gave me the prescription! I had had the lecture a few times about getting off them!! No pressure then!

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SnazzyD
SnazzyD
in reply to powerwalk

This is a rather chewy paper but page 35 has a couple of relevant sentences

ncbi.nlm.nih.gov/books/NBK2...

Read the conclusion on this, again just a few sentences

academic.oup.com/jcem/artic...

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powerwalk
powerwalk
in reply to SnazzyD

I will - thank you.

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SheffieldJane

Yes I have, on and off. I think it is more to do with PMR in my case, the constant pain and unwell feelings. It sounds to me like you never gave Prednisalone much of a chance and that you are on a pointless low dose now. I agree that you go through phases of horrible “ here we go again symptoms” be it UTI s or digestive problems or in my case horrible bursting eyestrain. Limited energy to be sociable doesn’t help, nobody except our group understands.

My cystitis type symptoms went when I replaced Adcal with vit D and had a dairy filled diet. Dietary change has helped my digestive issues, 10 mgs of Amitriptylin has bought me a few hours sleep. Rest and pacing has helped my symptoms and low mood. So bit by bit, with my little sword I have fought off the enemies one by one. If I slipped into a proper depression (and we have countless good reasons to) then I would have it treated by undergoing talking therapy and or taking an experimental course of anti-depressants. I do not, however fight the only drug we’ve really got. It is my friend and I understand it and am grateful for it. You do need to get yourself on the right dose. Take little walks, soon enough things will begin to grow and it will get lighter and so will we. X

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powerwalk

thank you. Pain is ok - its the other things that are the issues unfortunately. Feel like I'm walking in the dark!!!

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SheffieldJane

I cannot cope easily with social situations, I find them exhausting. Rooms in my house have been filled with the cacophony of happy shouting voices. My grandson and I would creep off and find a corner to play. I seem to have a family of loud extroverts except for one clever little introvert. This throws our “ otherness” into sharp relief, I found. You may be having a reaction too. We need to embrace the quiet sometimes. Do you have physical discomfort alongside your low mood?

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powerwalk

Pmr pain is not as severe. Leg aches. The fatigue is dreadful. But i am plagued with utis. Cannot get rid of them. I too find any kind of social thing to be avoided at all costs. I just about function in work lately but thats coming to an end soon in feb. Had a right fall yesterday dont know i didnt break something!! Tripped oversomething These things dont help!

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SheffieldJane

They don’t help. I can’t imagine how you managed work this long. I think I ended up with PMR because I worked on through when family life was quite traumatic. Be kind to yourself. X

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powerwalk

Thank you x

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SnazzyD

High doses of calcium give me cystitis in hours.

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PMRCanada

I agree with the suggestion of getting a Synacthen test given your current dose. I haven’t yet navigated those waters (I’m at 9.5mg), but I am paying close attention to all the posts from folks at your pred levels.

From what I’ve read, your adrenal system may be struggling to get started again, hence why the S test would be helpful so you know what you’re dealing with.

I struggled with depression in the early days, and I believe it was from the PMR. I was in shock when diagnosed and felt cheated out of my retirement (age 55). Dealing with pain, stiffness and fatigue left me exhausted. Taking pred at higher doses brought on mood swings and made my mind race. I would get stuck in the mire of dark thoughts rolling around in my head. Those around me didn’t understand (like folks on this forum did).

So I made some changes....I had too! I went to my therapist and would talk through my fears and woes. I consumed a few types of cannabis that helped calm my overactive mind, and addressed the insomnia I was experiencing. It also lifted my mood. I also made lifestyle changes including diet overhaul and incorporation of some water exercises. I have the luxury of not working, so I would listen to my body and nap when I was tired. Lastly I surrounded myself with supportive people (and avoided folks that seemed to increase my stress levels). And I cried, often, especially in those first dark months.

I sincerely hope that you get some relief. Please don’t be disappointed or angry with yourself given you’re depressive state. You need you right now, no sense waging war against oneself. Be kind and compassionate with yourself, just as you would if it was a dear friend who is the one who is going through similar circumstances.

Keep us updated, and feel free to post whenever necessary. We will be right here, with understanding and support.

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powerwalk
powerwalk
in reply to PMRCanada

I feel so isolated. Like I'm inside a shell. Bit scary - I am due to finish work in about two months - but instead of looking forward to it like I was - I'm afraid I'll end up even more isolated on my own. My husband is very good - but in fairness I haven't really told him I feel so low. He knows I'm struggling big time with the fatigue - but I haven't used the "D" word. I did have very bad post natal depression years ago - neither of us want to go back there!!! EVERYTHING and EVERYONE is getting on my nerves - its not even rational. Ha I like the cannabis bit - I've never had it - though I do fantasize about it sometimes - ha!! I do think its physical based if you know what I mean - in that if I felt better in my body - my depressed mood would be better - if you know what I mean. It reminds me of years ago when I was diagnosed with ME/Chronic fatigue - your body just won't function properly. Thank you so much for your respnse - yes would be lost without this forum!

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pmrkitty
pmrkitty
in reply to powerwalk

I cannot take prednisone or pain meds so my rhumy put me on Cymbalta. It has help me with the anxiety and depression. I tried cannibas and it didn't work for me but I would give it a try if I were you. Hope you feel better soon. Hugs and warm thoughts to you...Kitty

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powerwalk
powerwalk
in reply to pmrkitty

Thank you. How do you manage the pmr without the pred? Does the cymbalta treat it?

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pmrkitty
pmrkitty
in reply to powerwalk

I hurt a lot but the Cymbalta keeps me from dwelling on it...still there is pain. Some days I don't get out of bed and I use heating pads, Aleve (helps a little) and my husband massages me lightly. I'm hoping to get a hot tub, my daughter has one and when I visit her and use her hot tub, it helps.

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powerwalk
powerwalk
in reply to pmrkitty

Oh thats rough on you. Havent heard of anyone doing without the pred. Very best wishes.

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PMRpro
PMRproModerator

I think you need a synacthen test to see if your adrenal function is adequate. Your GP is a fool - and I don't really say that lightly!!! You have been on a high enough dose for long enough for it not to be top notch - and, strange as it may seem to your GP, some people have poor adrenal function even without ever being on pred. Yours have gone into hibernation - and may well not have woken up.

"I feel so isolated. Like I'm inside a shell." - I wonder, has anyone mentioned burnout? That's how I felt. Your job was not helping either - there are a lot of causes of burnout.

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powerwalk
powerwalk
in reply to PMRpro

No - no-one ever mentioned burnout. I always felt thats why I got the ME years ago - and thats kind of how I feel now - weird and spaced-out. Like I'm drugged. I don't trust myself not to lose it - and its not me - I feel very close to exploding.

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PMRpro
PMRproModerator
in reply to powerwalk

You need expert input - and an option to explode in a safe place...

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powerwalk
powerwalk
in reply to PMRpro

yes - I keep waiting for this "magic" thats going to happen when I finish work in a few weeks!!!! Thank you.

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PMRpro
PMRproModerator
in reply to powerwalk

But it may not be enough if you are too buried...

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powerwalk
powerwalk
in reply to PMRpro

yes - thats my fear now to be honest! Thanks for your help.

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PMRpro
PMRproModerator
in reply to powerwalk

So you need the avalanche experts before you disappear...

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powerwalk
powerwalk
in reply to PMRpro

Yes - these ones!!!!!!! On this forum!!!!! Yes will keep a close on eye on things - if no improvement I think I will look for the test.

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PMRpro
PMRproModerator
in reply to powerwalk

No - also the mental health avalanche experts I think. Been there, done that...

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PMRCanada

Yes, our physical health certainly impacts our mental health (and vice versa). I too had post partum depression and agree, I don’t ever want to go back there again!

I know you feel vulnerable and hesitate sharing openly and honestly with your husband about your mental state, however you say he is supportive, and he can’t fully support you if he is not aware of the extent of your mental distress. No sense in suffering in isolation when there is personal and professional supports out there.

There is such a stigma about mental health still, folks get embarrassed. Yet if they have a physical problem they are often able to share about their symptoms in an effort to get relief. Sometimes we have to prioritize our mental health.

Wishing you some relief, some calm, and some healing. Take good care!

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powerwalk
powerwalk
in reply to PMRCanada

thank you so much.

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Estellemac

I don’t know how you feel personally but I can empathise with you in so many ways with what you have talked about.

Can you leave work early and go sick? I thought I could cope and was coping but the relief I felt not having to pretend I was ok mentally or physically was like a great weight off my painful shoulders.

SI worried about isolation too. I’ve always worked and never had time off sick. That’s when my husband knew there was something more wrong with me.

It took time to adjust being off sick but I had more time and flexibility for doctors. PMR is still the bane of my life and the slightest stress sets me off crying or getting angry with everyone. It’s more the up and down swing of meds and pain.

I am still battling with Doctors to understand PMR and “quality of life” versus “poisonous steroids” and “why aren’t you off steroids yet then”? Would you take poison if it didn’t help Doctor? No? Then why do you think I do? It does me more good than harm in my opinion not long term may be but I need to live for today. Who can say what tomorrow will bring. A Cure!!!! Oops hallucinating again. I see a different one each time so it’s like Groundhog Day each visit.

Do what’s best for you. As hard as it is to tell those you love it’s amazing at how resilient they can be. The change in my husband was massive. Took me more time to accept it than it did him.

I have SAD Day. That’s Shout at Doctors Day. Some are selectively deaf, some are arrogant, some are too busy, some really care but are restricted by the system. I am always calm and repetitive doesn’t do any good to actually shout. You just have to find one you can control and make it worth their while to treat you rather than see you twice a week. Or hear you on the phone having a bit of a rant?

I hope you find some release from your suffering and get the medical support you need soon. Don’t get angry try to get even with a health life balance. Good luck.

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powerwalk

Thank you so much. Yes I agree hen I finish work in a few weeks - I hope to be able to gather myself - my husband says to give it at least 6 months to give myself a chance to feel any better. He's probaby right. This level of low scares me as its very hard to think straight. Its just so lonely sometimes - no-one has a clue how I feel - then I feel guilty because I should be more "lively" at home. Though my grown up kids are amazing and don't expect me to be jumping around the place - sometimes I wish I could be "normal" for them - if you know what I mean. I want to be the person I am - before all this stuff. And thats from someone with ME and fibro for years - but nothing has turned me into what this PMR and steroids thing has. Sorry - I know I seem bad - I WILL rise up again - if I don't I will be looking for more medical help. Thank you.

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PMRpro
PMRproModerator
in reply to powerwalk

"my grown up kids are amazing and don't expect me to be jumping around the place"

If they are grown up - they don't NEED you to be jumping around the place. Did you expect your mum to do that?

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powerwalk
powerwalk
in reply to PMRpro

No but sometimes i'd like them to have the fun me. If you know what i mean. Maybe i miss that!!

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PMRpro
PMRproModerator
in reply to powerwalk

I manage to have fun without jumping about...

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Purplecrow

Hi Powerwalk. Depression! Understood!

My genetics and personal history pre-disposed me to depression.

I use Effexor anti-depressant, daily.

Supplemental Bright Light Therapy helps me. I Have used it every winter for 25 years.

I have recently begun to use acupuncture for depression. It seems to work very well for me, and its effect was validated by my doctor.

For me, depression has been one of the worst symptoms of PMR.

You are not alone with this experience. Please ask your doctor for help. Accept a brief trial of anti-depressant medication...it will help you . Literature may say it takes weeks to work, however, the reality is , you will begin to feel better in just a few days. Trust me.

💜💜💜🙏🏽Jerri

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powerwalk

So good when you find something that actually works. Yes - many thanks for this - I will keep it in mind. Thank you.

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Cyclegirl54

Hi powerwalk,

I have suffered from anxiety and depression since being diagnosed in Feb 2018. It’s been the complete change in lifestyle, the steroids and accepting what’s happened to me. If you are in the uk, your local nhs may have a service called Steps2Wellbeing. I’ve used it for talking therapy and found it useful. Another service is MyHealthMyWay.

I actually have had a good few days since I took on that mantra ‘it’s gonna be grand’ . And I’m am very glad I’m not working as I find any stress practically makes me want to jump off a cliff. And I’ve really tried to ditch the worrying- jings, I could worry for Scotland given a chance!

Anyways I’ve rambled enough. Seek help and don’t suffer in silence please.

Take care Jackie

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powerwalk

You havent rambled. But yes I know what you mean. Trying to be normal in work is really depressing. Probably cos im more tired than ever. Too much work in it. Thank you.

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Mrs-CJ

I won’t go into my journey details.....but I suggest you get out and walk. Even if it’s around the block, or for 20 minutes, have breakfast and then get your shoes on and go. It always helps me.

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powerwalk
powerwalk
in reply to Mrs-CJ

Thank you. Yes - I intend doing just that when I finish work in a few weeks - at the moment thats just about as much as I can do. Many thanks.

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Valnvaughan

I’ve had 3&1/2 years of PMR with several episodes of feeling on the verge of depression. I was familiar with symptoms after 2 bouts of depression in the 90s which lasted a year each. I recognised that the cause was frustration that this disease had robbed me of my expected lifestyle in retirement. My GP pushed tablets, but I resisted. She also recommended a course of Mindfullnessness. I used a book “ Mindfullness for Health” and followed the 8 week course very carefully. Even tho I felt some parts were silly. It worked for me and I’ve been more settled since, dipping into the techniques as I felt I needed.

Giving up work is a major life adjustment. No doubt you had numerous plans. In light of PMR these may have to be delayed or adjusted. But you will have time for more rest and small times for exercise when you want....these should aid recovery.

I have been as low as 2mg Pred per day, but up to 5 mg at present following a Christmas invasion by family and a fall. Listen to your body.

I wish you well, and you have the support of forum friends.

Valerie

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powerwalk

Oh thank you. Yes hoping for maybe better times when i can rest a bit more when i finish work end of feb. Well done getting down to 2mg and keeping ok. Hope you are ok after the fall. These things set us back. I know i broke my toe recently! Thank you.

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Daisychain12

Darling I urge you to google. VALDOXAN. It’s a wonderful help to me with sleep and mood and has extremely low side effects profile. I got depressed a few months ago. Cymbalta and Valdoxan lifted it cxxc

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powerwalk

I will. Thank you. X

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Sparky55

So, if your adrenals aren’t working well, is there something that can be done to help them along?

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powerwalk
powerwalk
in reply to Sparky55

I think its just time for them to heal unless its bad in which case they need steroids to help them work. Im not an expert in this though.

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