Really depressed

Hi all,

I'm really depressed at the moment. I've been on the PMR journey for 3 years and had managed to gradually reduce medication to 1mg when Bam all the symptoms returned. My blood markers are normal but my GP has suggested going back up to 15mgs. My question is "is this too high" as I've read that the general advice is to return to the last dose where you felt OK . I'd be grateful for any wise words of wisdom from the great people on the forum.

23 Replies

  • My Doc said 'go up 5mg' then reduce to the level you felt good at. That seems to have worked for me a few times when the beastly flares happen.....

  • I think I will try this as I'm very reluctant to go back to 15mgspd as over the years I've had a lot of the side effects that go with prednisolone

  • I am sorry this has happened Goldielady, just when you were in sight of the finish line too. Clearly PMR is not done with you yet. Can you trace it to a stressful event or physical exertion? I usually can. Has it been building slowly? That might give you a clue to the optimum dose to return to. When did the first twinges start and what dose were you on ?

    I wonder how it would respond to being zapped at 15 mgs and then a swifter taper to 5 mgs, just to show it who is boss?

    Anyway don't double punish yourself by getting depressed. You've done this before and can jolly well do it again! X

  • You're right in thinking life has been stressful recently. I won't bore you all with the details but I think my situation might have triggered this relapse. Thanks for your support just think I'm feeling sorry for myself

  • It's good for us to feel "sorry for" ourselves once in a while. We deserve it. PMR/GCA is no picnic, and while there are a lot of worse things that could have happened to us, it sure doesn't feel like it when we can't sit up in bed without help, or pick up a teacup without whimpering at the pain.

    So here's the deal: I get 15 minutes a day to feel sorry for myself, in private. That's it. I let myself feel what I feel, then I move on to what new adventures the day may hold.

    Because every day really is a new adventure...especially when you're trying to figure out things like how to turn the taps in the shower after the big handsome lug you live with was feeling especially strong when he shut them down...

  • I get that with the handbrake on the car!

    The depression is awful, but yes there could be worse things, I am feeling very down at the moment, thought my doctor was on my side, but no. I have said it many times and will say it again - thank goodness for this site!

  • I really do understand. I have many talents, but neither frustration nor patience are among them, and both are "sorely" needed in dealing with PMR/GCA every day.

    We're all in this together, at different places on the road, and we're walking at different places. But we hear you. We're with you.

    Hang in there.

  • I'm very glad that I have a press button parking brake...

  • Greetings Goldielady

    Sorry to hear you're struggling and feeling 'down' :-(.

    Just to say, and from experience, I think the combination of this unpredictable chronic illness and the uncertainties around the meds to manage it (even with the best of 'plans') are bound to make anyone thoroughly fed up!

    I think the others here have said it all - part of the coping process (physically and emotionally) is about pacing, resting, avoiding stressful events and situations (easier said than done, I know!), and, yes, adjusting the pred dosage back UP a little to keep the symptoms under control if necessary. Getting the Pred dose 'right' really seems to be a case of experimentation and monitoring at any stage in the process until or unless PMR goes into remission. 2-3 years seems to be the typical timescale for many, but longer for some, depending on a host of other factors.

    I know this feels like going backwards in the process, but as the Aunties and veterans here say, better to have a reasonable quality of life (symptoms-wise) on a higher Pred dosage than suffer on a too low one - and with the risk of uncontrolled disease activity causing other problems.

    That said, if you're down to 1mgpd at 3 years into PMR, that sounds pretty good in context - and I'm sure many of Us Lot will be quite envious! Just be patient, and remember 'It's not a race to Zero'. ;-)

    Hope this helps, try to keep your chin up on this Snakes and Ladders PMR journey,..

    MB :-)

  • Thanks MB wise words. I think I need another of your Janet and John stories to cheer me up !

  • Ah, thanks and bless you Goldielady :-)

    Well, J&J are still around and lurking in my fertile (or is it futile?) imagination. I'll see what more intrigues I can come up with ;-)

    MB :-)

  • Honestly MB - 2-3 years really is the exception rather than the rule. OK, the forums are a skewed sample but I haven't come across more than about a dozen who were off pred in 2+ years in the 8+ years I've been on the forums. That's out of hundreds.

  • I guessed as much PMRpro, even though my Rheumy stated in writing that (q.) 'for the vast majority of patients, PMR goes into remission in 2-3 years'. And, my new GP was categorical that (again, q.) 'I get all of my patients off the Preds in 2 years'.

    Are these professionals on the same planet as Us Lot? Somehow, I doubt it! :-/ :-D

  • Shame they don't keep up to date with the experts isn't it?

  • Quite...!

  • Many experts say as a first measure to add 5mg to where the flare happened. If it works that is great and saves reducing all the way down. If it doesn't work within a week - try plus 10mg.

    There are 2 reasons for a flare: you reduced the dose too far and the steady state of the underlying disease poked through or you didn't reduce the dose but the underlying disease became more active. Unfortunately it is very difficult to tell which it is. The trouble is, if it is the second scenario, just adding 5mg may simply not be enough.

  • Very well-put - I think this sums it up in most cases ;-)

  • So feel for you. In the same place as you at mo. Had PMR & on Preds for 2 yrs & now down to 5mg. Struggling but determined I'm not going back up high as the Dr put me last time & puffiness & weight I'd lost all came back again. Trying B12 tabs & hemp oil capsules at mo. Dont know if they'll help, but will try anything. Hang in there. 🤗

  • You probably don't need to "Try anything" since "anything" won't help with PMR. Pred is the only answer to PMR so if your problems are PMR - take the dose of pred you need.

    Most side effects of pred can be managed when you know how: cut carbs drastically to avoid or at least minimise weight gain and cut salt to avoid the puffiness.

    There is no virtue in being on slightly too low a dose - and the longer you leave it, the higher you may have to go to get things under control.

  • So sorry you are feeling depressed...such a frustrating illness when you think you're at the last hurdle. It's helpful for me to read the replies to you and I can see you're feeling the support of the others here.

    Hope you find the right dose for you soon.

  • Really feel for you and empathise - I hit the same spot without even realising. I'd got down to 1mg over sensible months of tapering, but didn't take in to consideration a crazy year of stress in 2016 [some good some bad] which culminated in moving house, and then when everything should have started to get better I started to feel terrible - life shrinking exhaustion, pain and stiffness everywhere and usual story .... Even after 4 years of PMR on and off it didn't occur to me [or the new GP] what was going on.

    Five weeks ago the light went on - 'in passing' he suggested I could go back on 15mg and see what happened. By that point I would have done ANYTHING - so I did, and in 24 hours life returned. I hadn't realised until I started to feel 'normal' what pure hell it had been.

    SO .. it is now back to square one and slow tapering again, and I'm fine with it and this time round instead of having an end goal of zero I will stop where I have to stop be it 7mg/5mg/2mg. whatever works. I do hope you get it sorted, its a long haul and compromises seem to be part of the programme. Good luck

  • I would like to thank you all for your support. Took 10mgs prednisolone this morning and hey presto a few hours later I'm pain free again! Until you reach this stage you don't realise how awful you had been feeling. I'm a lot more optimistic and will begin to gradually decrease when I feel able. Thanks again everyone I feel so much better with the support of you all

  • Dear Goldilady,so sorry you are feeling depressed,l think you did very well to reduce the preds to l mg ,l am on 3 mg at the moment but it has flared up again and l think increasing to 5mg would be much better to control the pain and symptoms. It does make things worse when l overdo the gardening and house cleaning etc, but it is so frustrating to have to keep having to take it easy when there are always jobs need doing,l can't imagine ever reducing to l mg,lthink l would be right back where l started l do hope you will feel better soon,l really do sympathise with you.

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