PMR and Depression

[Littlejan22]

I have been diagnosed with PMR end of last September, and a month ago I am struggling with depression and getting out of bed, is this normal, and how can I overcome it? Happy with any advice please?

[PMRpro Ambassador]

Please tell us a lot more about yourself and your PMR journey, especially your dose of pred, how you are reducing it and so on - not because we are nosy but we can't really say anything helpful without some context. This aspect of pred/PMR is a bit different to the anxiety you complained of a month ago.

You aren't tapering the dose of pred relentlessly to zero, you are looking for the lowest dose that works as well on the symptoms as the starting dose did. In the early days of PMR that will be higher than it will be later - some people take years to get reliably below 10mg for example. If you overshoot, the symptoms will return as the inflammation builds up.

Depression and difficulty getting out of bed are often found in untreated PMR - I'm assuming you mean physical difficulty in moving to sit on the bed and stand up? And depression can be part of ongoing treated PMR because of the loss of normality - it is a bereavement just as much as losing a friend or family member.

[Littlejan22 in reply to PMRpro]

Hi PMRpro - firstly thanks for your kind reply, my journey for PMR started on 15 mg Pred in September, I was advised to taper at 1mg per month, I was fine until last month when I was stable at 9mg, dropping to 8mg has brought back pain to my shoulders and buttocks and hips, not as painful as it was at the start, but more pain than before, I have a dog which I walk 4 to 5 kilometres a day as he is an American bulldog, I put a halti on him so he can't pull as he is 5 stone in weight, I am 10 stone and only 4 ft 11 up until last month when i dropped to 8 mg I was fine, should I be raising it back to 9 mg?Depression is more mental as I feel like an old lady my 74 year old mother is fitter and than I am, currently I am 56 and some days I feel like I am 96, I know I should be taking it easier but I love physical activity and walking in the fresh air.

Thank you once again, your advice is important to me, Janet

[PMRpro Ambassador in reply to Littlejan22]

You are never tapering relentlessly to zero - you are looking for the lowest dose that gives the same symptom control as the starting dose did. It sounds as if you have arrived there for now - 9mg. It doesn't mean you won't get lower, just not yet. Wait a couple of months and try again - as time gets on you do usually need less but this is early days, barely over 6 months. Patience is the key with PMR.

[Littlejan22 in reply to PMRpro]

Thank you so much I will bring it back up to 9 mg in the morning, my dropping mood may be down to the additional pain, restless all night long, not slept well at all for the past month. My shoulders are very painful I have a memory foam pillow and have a brought a Dormex bed, it is a bit too firm but I do feel more supported, the secret is in patience as you mentioned, I was seeing it as an achievement getting off the steroids as quickly as possible, but now realise this is to my detriment and the pain feels like a flare up. Thank you once again I will leave further reductions in my pred.

[PMRpro Ambassador in reply to Littlejan22]

You will get off pred if and when the PMR allows it. Not before. But you WILL get to a lower dose if you go about the right way - and that is never rushing down the dose come what may.

It is a chronic disorder, lasting more than 2 years for 2/3 of people. The underlying autoimmune disorder sheds inflammatory substances in the body early every morning and causes a build up of inflammation - the higher dose at the start clears that out and then you reduce to find the lowest dose that keeps the inflammation under control: a bit like spring cleaning and then keeping the room dust-free with a daily dust and vacuuming. Stop dusting - and the dust builds up again. As long as that continues - you will need some pred. It should get less as time goes on - but half of patients still need some pred for more than 6 years. Most of them are on a very low dose, some may need the pred for adrenal problems - but you can't really tell how many.

[Littlejan22 in reply to PMRpro]

Thanks I have increased my doseage back up to 10 mg today as I have only reduced it in the past 5 weeks hoping the spring cleaning will commence again, thank you Janet

[piglette]

What dose of pred did you start on and what level are you on now? You should not be in a lot of pain if you are taking enough steroids.

[Littlejan22 in reply to piglette]

Hi I started at 15 mg in September, today I am now 8mg reducing 1 mg per month, I was fine until I went from 9 to 8 mg can't believe the flare up in my sore shoulders and my mobility is really limited, I try to walk my dog on our usual 4 /5 kilometres a day but it is proving difficult especially if it is cool outside. I am on Pred, thanks Piglette for your reply it will be so helpful to me? Janet

[piglette in reply to Littlejan22]

I found that I was not up to 1mg a month below 10mg and so reduced it to 0.5mg reduction per month, If you are in pain at one dose you should never reduce, it is asking for trouble. You could just go up 5mg for a week, see if you feel OK and then go back to 9mg.

[Littlejan22 in reply to piglette]

Sounds like a good plan, I must admit I didn't like it when I felt like I was in so much paid again, I have gone back to 10 mg today, hopefully that should help. I am 56 years old and have been stressed about finding another job, I have got a 2nd interview tomorrow in the Midlands but have found out that I have to drive to South Wales Cardiff if I get the job, can't imaging 7.5 hours in total driving in one day, have to check tomorrow/? Thanks for the advice Janet

[piglette in reply to Littlejan22]

That sounds like some commute! Good luck with the interview.

[SheffieldJane]

When you ask if it’s normal, well no, but it’s usual. Few of us escape without a few spells of depression. Chronic pain, a limit on our abilities and mobilities, sleep deprivation, heavy medication. It’s the perfect recipe for low mood. When you say you have difficulty getting out of bed, do you mean because of pain and stiffness or sheer lack of motivation? It is important to get your Pred dose right. If this depression is dragging on it might be an idea to speak to your doctor. I know we are all reluctant to bother them at the moment but good mental health is vitally important. Someone in my life is having on-line counselling from a hand picked therapist. The change in them is stunning and heartening. Don’t suffer in silence. This is really hard. 🌼

[Littlejan22 in reply to SheffieldJane]

Thank you for your kind words, I have been reducing from 15 mg in September to 8 mg now but since dropping from 9 mg to 8mg this month the pain has flared up and I am struggling, should i go back to 9mg I thought as it was low dose it wouldn't impact me like this. The depression started in the last month, I have realised how difficult, I just want to get to zero as quickly as possible, perhaps I am reducing too quickly, I have spoken to my GP and he has recommended a therapist, just wanting to start with her, but with the pandemic they have fully booked mental health clinics, I will wait patiently, thanks again for your advice, Janet

[HeronNS in reply to Littlejan22]

I found I needed to taper in half mg steps when I got to about 8 mg. It's possible you'd do better, both physically and emotionally, with a similar small step once you are ready to try getting to 8 mg again? Try it with a slow taper method and only .5 mg, and you may find it more comfortable. There are several slow taper methods , which you'll find in our pinned posts. I've always used Dead Slow Nearly Stop but DorsetLady's Simple Taper also gets good reviews. All these tapers can be tweaked for our own needs as we progress down. Good Luck! 🌼🍀

[SheffieldJane]

I think it will help to foster patience, in fact I know it will. With the disease as well as for a good therapist. Inflammation is harmful and has been associated with depression in recent studies. Try not to be too afraid of Pred. It is the only drug that helps us. If you are particularly worried about certain side effects, let us know, there are many ways to mitigate them. X

[Littlejan22 in reply to SheffieldJane]

Thank you so much for your reply, I have gone back to 10 mg this morning which was my safest amount, I hope it will improve my mood too, I have a second interview tomorrow in the Midlands, however, I have found out there is a lot of travel to South Wales - Cardiff a 3.5 hour drive one way once a week, not sure how that will work if I get the role as I find travelling difficult enough. Appreciate your sound advice, not rushing to start the tappering for a few months.

[SheffieldJane]

Good luck with your interview! Or I hope it went well. Work will be a struggle but there are a few strong souls on here who do manage to work. That travel oh dear!Congratulations on the book btw. I had a look at your profile. Kate Gilbert wrote a useful book about our conditions, you can get it on Amazon. Take care, stay in touch!

[Littlejan22]

Thank you so much everyone, I am struggling to get out of bed due to the depression, something I have never had before, literally lying there for 2 hours each morning, its ruining my life, I recently completed my PIP Assessment and keep beating myself up with it, I have to wait 8 weeks for the result and I keep ruminating if I could of done it better, and I feel like I have messed it up, its been nearly a week now, my sleep is awful waking every night at 2 to 3am can't cope for much longer like this, the stress I am putting myself under is making my shoulders in so much pain and my hips, I think stress makes it worse! Any help much appreciated feels like I am losing my mind?

[PMRpro Ambassador in reply to Littlejan22]

Then you must speak to your GP and get some help before it gets worse - depressive mood can be part of autoimmune disorders and also a side effect of pred and yes, stress does make it worse. But it is possible to manage it better and, above all to start, to let you sleep better every so often at least to break the waking pattern.

[Littlejan22 in reply to PMRpro]

Thanks I am speaking to my CPN on Monday, I just need keep hiding my feelings, I did tell my oldest daughter yesterday and she seemed shocked, she couldn't understand why I literally felt immobilised and couldn't move, I would of staid in my bed all day but I have a dog and had to get up to let him out in the garden, really struggling I think doing the PIP assessment and it seemed to go badly has made it all worse!

[PMRpro Ambassador in reply to Littlejan22]

Unfortunately our offspring don't quite "get" it - they will one day. And, no, you DON'T need to keep hiding your feelings. If nowhere else you can let it out here but your daughter does need to be told and have it explained in words of one syllable or less of that is what it requires

And yes - it may be worth trying splitting your dose to see if it makes mornings better. Don't worry about the PIP for now - if it is turned down, appeal and make sure you get some help next time.

[Littlejan22]

Would it be helpful to split my pred dosage? So that there isn't a build up first thing in the morning?