Depression

[Ambatu]

I am down to 6mg, reducing 1mg monthly and I have really bad depression and not sure how do cope with it. I seem to be on the verge of tears most of the time. Don't want to go anywhere. Is this to do with my adrenal glands and how do I get past it?

[SnazzyD]

Low cortisol can cause this or amplify whatever else negative is going on in life. One just doesn’t feel like one has the resources thanks to the lack of our vital stress juice, cortisol. Firstly, you can give yourself a chance by dropping by 0.5mg instead of 1mg. Yes, the only way to prod the adrenal axis into action is by sustaining this low cortisol level. However, it’s a balance and for anyone who starts to suffer from this, 1mg per month can be way too fast. If it were me, I’d go up a mg for a week and see if things improve to get your answer. Then reduce by 0.5mg doing the dead slow approach and possibly add in a few weeks to settle on the new dose. From 7mg to 1mg I was doing 0.5 over anything from 4 weeks to 14 weeks. The lower I got the slower I got.

The only way I survived was by doing very little to try not to over reach what cortisol I had. Mentally and physically it was tough and I tried to keep telling myself it wasn’t real as such. However, I can’t say it was easy. Don’t tell yourself you should be managing and feeling good because you are well under 10mg when all I meant to be easy. You could get your cortisol tested once you get to 4mg or less.

[Ambatu in reply to SnazzyD]

Thanks, I will be seeing my Rheumatologist on the 1st October so hopefully will be getting some blood tests etc

[DorsetLady PMRGCAuk volunteer]

Certainly sound like adrenals - see this link for general info -

healthunlocked.com/pmrgcauk...

The only way through getting your adrenals to start working is a very slow taper, with small drops in doses. Your depression will get better in time, but there is help out there [not just extra medication] so please speak to your doctors [GP may be better option] to see what is available locally.

This written post Covid might help a little -

nhs.uk/every-mind-matters/m...

[Ambatu in reply to DorsetLady]

Hi, I did speak to a doctor a few weeks ago and he said steroids only affect you like that on high doses !. No help at all

[DorsetLady PMRGCAuk volunteer in reply to Ambatu]

I despair sometimes - yes Pred may make you depressed at higher dose, but so do stuttering adrenals when you are on low doses of Pred, and they aren't functioning properly.

Different thing altogether... 😲

[Ambatu in reply to DorsetLady]

Thankyou for your comment

[ReallyOriginal in reply to DorsetLady]

When I asked my GP about whether my adrenal glands were waking up as I was suffering from anxiety - his answer was “I don’t know but what you are saying sounds right”. 😱

[SnazzyD in reply to Ambatu]

He’s right. This adrenal related depression issue isn’t a direct effect of Pred but a side effect of the suppression of the adrenal glands. This is because there has been so much artificial steroid in the system they haven’t needed to work until now.

[Ambatu in reply to SnazzyD]

Thamkyou I understand your explanation much better

[PMRpro Ambassador in reply to Ambatu]

Well he is WRONG, Poor adrenal function when reducing the dose also can cause such effect - totally different cause but similar effect. Not the pred, but the lack of it.

[Ambatu in reply to PMRpro]

I have learnt so much from this forum. I felt like telling him to join it. I am dealing with it the best I can and I think it helps if you know what's causing it. Thanks for the good advice as usual, Brenda

[SnazzyD in reply to PMRpro]

I think we three are all agreeing but not over the correct/incorrect judgement, perhaps due to differences in interpretation. I have interpreted his comment as correct in that high doses do affect mood directly but not so on low doses. I think you’re saying it incorrect is that you take his comment as saying the only time you can get moods changes in the journey is in high doses. Just wanted to clarify in case we are confusing readers.

[Ambatu in reply to SnazzyD]

I understand what you mean and I am sure others will

[Ambatu in reply to Ambatu]

I actually like the doctor but I was trying to get over that I was quite depressed and he said its not the steroids and if you feel the same in a few weeks get back to me 🤥

[PMRpro Ambassador in reply to SnazzyD]

I took it as there are only problems at high doses, which isn't true, And it is related to pred dose. So yes - you are right!!! So difficult to clarify when we write our answers isn't it!!! Oh for a f2f forum ...

[Grammy80]

I've been roller-coasting with pred, like so many of us, for five years and nudging into six. What you are going through is real and difficult and you've been given some fantastic information. I reduced by .05 only and sometimes stayed on that dosage for 6-7 weeks if necessary until I had an 'even' feeling.

Is there something that you really enjoy? It can be outside, inside, TV, books, crafts...whatever it is ...do it. Permit yourself to indulge! Yourself in that pleasure. In the moments you have energy...spoil yourself. Have ice cream. I hope you are able to NOT do something if you are tired or mentally distracted. It is tough, life keeps happening, and we don't feel up to coping. I would tell myself this is all chemically induced and body functions I can't control. You, like many of us, will travel through this crummy part of the journey...and be alright. You have the awareness and strength. You are getting tons of hugs here🫂🫂🫂🫂🫂~!

The greatest gift the forum gave me was I learned it would end and I knew, with them, I was having shared experiences, Never Alone. Hugs to you💞

[herdysheep in reply to Grammy80]

Lovely post Grammy80. I have only heard about the adrenal issues on this forum. Never from a medic of any description. We would be in far more of a mess without the fantastic info shared on here with care and understanding.

[Grammy80 in reply to herdysheep]

It is difficult to articulate how important this forum has been to me. I'd been misdiagnosed for almost a year before being told I had GCA. It seemed nobody, doctors included, had a clue!!! My diagnosis came only after losing some sight...plundering aroung the internet I could find nothing....then! I found PMRGCAuk and I wasn't alone. It wasn't the end of the world~! People 'managed' their diseases...PMR and GCA...it was normal to go up and down in dosage depending on what life was tossing at us! Wonderful people had made it through and handled such difficulties....I knew I would too. With the forum, I could handle it if I seemed to go backward sometimes, I knew they had. The people of the forum gave me knowledge of my disease, the strength to speak up to my doctor and get my concerns satisfied and also the opportunity to befriend others so we could share and draw strength from each other, help each other. My strength comes from all of you and the amazing situations you deal with.....xoxoxo🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑🧑🏼‍🤝‍🧑🫂🫂💞💞💞💞big hugs!!!

[waltztherapy in reply to Grammy80]

Totally agree. Hugs back to yiu and everyone. Xx

[Leafsong66]

Hello fellow 6 mg er! Sending you love and prayers to get through this hard time. I agree with all of the replies! Doctors need sooo much more understanding to see the big picture! They often lack the whole person perspective that would help us have a clearer understanding of what’s going on.

In the meantime this forum is so valuable. It’s very important to reach out and share with trusted people what you are going through. Depression can be very dangerous ( no matter what its source) so please keep contributing and sharing where you are at.

[Potemkin]

Can you self refer for help? I've done that for talking therapy and it was really helpful. Worth doing even if you decide not to take it up as waiting lists are a while.

I also find doing some short meditation really helpful - I use Headspace but there are lots of apps. Plus getting outside for walks.

I don't know about adrenal depression but these are things that helped me in the past before PMR. Whatever you do, don't feel you're alone. Sending you a hug.

[Polygolfer]

I also had mood swings associated with steroid intake. It’s different for every individual, but BOTH adrenal mal function AND steroid intake can cause a wide range of psychiatric issues, mood swings etc… it’s a powerful drug and it’s effects (direct and indirect via adrenal glands) can be quite distressing. I personally hated it. Hopefully your tapering works well and you can soon turn your back on all this.

[Lowercwmtwrch]

It's hard but depression is also a symptom of PMR. I suffered for years with Depression & Anxiety, I was prescribed every antidepressant in the book but nothing helped. Then I was diagnosed with PMR. When I was put on steroids the Depression & Anxiety seemed to clear up. I asked the doctor why that was after so many years suffering? He told me that the Brain is a Muscle too! So I know that I rely on the steroids for PMR but also for My depression! Be kind to yourself and go back up a one dose at a time then you will find a point where the depression goes away. And the see the doctor about antidepressants along with your steroids so you can start reducing again. But be kind to yourself & listen to your body let it be your guide! 🌻

[Ridge]

I have found it hard to realise we are really just a bag of chemicals and to have an imbalance changes us so radically. Pred of course alters that balance and it is hard. I’m reducing and have got to 3.75mg. I am doing .25 roughly every two weeks. I haven’t tried quite like this before. I think it is working but I do feel depressed. Mind you I have lots to feel depressed about!! Who doesn’t what with the state of everything today. But I do feel better after a vigorous walk/jog for 10 mins. Vigorous for me that is! Round the house up and down the garden. Get the heart rate up etc. I started doing it for heart health but found it helped with mood too.

[Gimme]

I was thinking a mix of all of those things will be adding up to low mood; the PMR, the adrenal suppression and the steroid withdrawal. It can be hard to tell what is causing what when you are tapering. PMR itself most definitely does cause depression and it is listed as a symptom and the steroid withdrawal won't help. The thing that I have struggled with, on and off, is the lack of energy to do the things that would have cheered me up. In the past, reading books used to help with severe depression, but my concentration has been so crappy on pred that I have struggled with that. All I can say is that at the stage you are at, you need to give your self the best possible self care that you can manage, and that's all the usual things. Good nutritious food, rest when you need it, take a nap, avoid activities that drain you or break them down into manageable chunks, get some fresh air, gentle exercise even if you can only manage it to the end of the road, try to spend a little time with people who uplift you, enjoy some nature and according a past therapist, watching nature videos are just as beneficial for the brain as being out there amongst it. Most important, hang in there, it will pass, even if it doesn't happen in the time scale that we would prefer. Hope you feel better soon. ❤️

[Ambatu]

Thankyou everyone for comments

[agingfeminist]

I am so please you posted this...I am having on-going adrenal problems (hovering near zero pred). I had forgotten that depression can be part of the story...really awful depression...no good looking for things that bring joy...there aren't any... really helpful to know that it will improve as my adrenals return to normal function. Just another bump on life's journey. Has even cheered me up!

[AlamedaCounty]

I found thi happened sometimes, even though I am now on a low dose. Try making sure you have some quiet time every day - ideally in the garden, if it's fine. Try also drinking coffee - new reports say this is good for your immune system. Don't push yourself to do things - try and take everything slowly - and good luck. It is nice when you come out at the end.

[bBarnabus]

Hi Amati

Thanks for opening up this conversation. One can feel so alone with pmr and depression makes it worse. Being sick like this for six years makes you wonder if there is a light at the end of the tunnel. It is really difficult to keep being positive. There must be lots of us out there feeling like this and often blaming themselves for their mood. It’s good to know there is a chemical element to this depression.

[Harrywogan]

Now how you feel struggling myself with anxiety and sleepless nights, it's hard x

[tangocharlie]

My GP was totally clueless when it came to my adrenal problems and admitted it, it's not something they deal with very often. Might be worth asking for a referral to an endocrinologist although expect a long wait - they're in very short supply. Depression can also be down to the effects of inflammation on the brain - you say you're off steroids but has the PMR totally gone? Sounds to me like this needs more investigations

[Ambatu in reply to tangocharlie]

I have GCA on 6mg, reduced from 30mg last November. I will be seeing the Rheumatologist in October. he might explain the Adrenal issues then

[tangocharlie in reply to Ambatu]

Sorry my bad, I must have confused posts - easily done with brain fog and reading through posts too quickly. When I was on the Helpline a few years ago I came across several people who reckoned they got depression when reducing steroids, especially when you go below about 10 mg, and it is a listed and known side-effect of Pred. Can you remember at what dose it started? I wonder if it's worth asking your doctor about trying a short term increase of Pred to see if goes away? Depression is horrible and shouldn't be fobbed off, Adrenal issues can surface anytime around the low steroid dose from about 7.5 onwards but seem to be most common below 5mg. Keep going and know we are here for you

[DorsetLady PMRGCAuk volunteer in reply to Ambatu]

If he explains it better than my link then do please enlighten us...

[Ambatu in reply to DorsetLady]

I certainly will but I very much doubt it. Its so strange because most days when I open my emails someone asks a question that relates to me, the hair one for example, mine has gone curly 😀. Keep them coming every one and thankyou so much for your advice Dorset Lady and to everyone else who offers theirs. This forum is the best x

[PMRpro Ambassador in reply to Ambatu]

Lots of people have said that - why it pays to read it with your morning coffee daily!!!!

[Harrywogan]

Hi Ambatu every word you've said is just what IAM going through, been at swimming pool today met girls for coffee and had a great laugh tear were there yes with laughing so much feel a lot better, hoping I get some good shut eye. Take care Harry W .

[Ambatu in reply to Harrywogan]

Thankyou. I also had family issues which didn't help. Nice to get out with friends.