Pride before the fall…

[Greenlife]

Diagnosed PMR January 2022, and immediately put on 15mg pred. This worked like a miracle and followed GP advice to stay on that dose for 2 weeks before reducing by 5mg every two weeks until I got to 10mg. All was well and since then I have reduced by .5mg over 7/8 weeks each time. At the end of January I was in the last week of a reduction from 5mg to 4.5 mg, and feeling quite pleased with myself, when I was hit by a wall of exhaustion. I had had the odd ‘heavy legs’feeling during the previous month or so, but no real pain and certainly none of the night time pain which I had had at the very onset of PMR.

When this exhaustion hit, I increased my dose to 7mg. with little effect, and the next day went up to 10mg, being 5mg above my previous happy dose. I have now been on 10mg for 9 days but cannot feel the miraculous relief that I had hoped to. I am now taking life much more gently and trying to rest every afternoon, but still feel exhausted. Unfortunately this comes at a time when my husband is having frequent hospital appointments, to which I have to take him, and although I do not feel particularly stressed by this, I suspect that I am probably more anxious than I admit to. Unfortunately this situation is unlikely to change in the immediate future.

How long should I carry on waiting to feel the effects of this higher dose, or should I increase even further? Of course like everyone, I am anxious to keep reducing but now realise that it does not always run smoothly. Any advice from you wise ladies would be gratefully received. I read your page every day and have learnt so much from it. Thank you for being there.

[pata63]

At 5mg to 4.5mg it sounds like you may have entered the zone of "deathly fatigue" when your adrenals are not yet producing enough cortisol to keep you going. Have a read of these:

healthunlocked.com/pmrgcauk...

I heard people talk about "deathly fatigue" but didn't know what they were experiencing until last May when it happened to me at 3mg. Suddenly I went "oh that's what they meant." See if this makes a bit of sense.

[Greenlife in reply to pata63]

Thanks for taking the trouble to reply and to sympathise with the ‘deathly exhaustion’. Unfortunately I think you are right that my adrenals have not yet woken up enough to take over the space left by reducing the pred dose. I think I will stay on 10mg for the time being and hope that tiredness passes, and then wait until I am less stressed before trying to reduce again, but this time even slower than before.

[DorsetLady PMRGCAuk volunteer]

Sorry to hear this, and would say it’s probably a combination of PMR being under controlled [even though you say you aren’t stressed about your husband you probably are] and your adrenals struggling.

See this re adrenals -

healthunlocked.com/pmrgcauk...

If it were purely a flare, you could stay at increased dose for up to 14 days without impacting your drop back down, but as I said think yours is probably both.

If the situation with your husband is unlikely to change significantly for the next few months then you may need to stay at 10mg to get you through it.

[Greenlife in reply to DorsetLady]

Thank you for your thoughtful reply. Since husband situation is not likely to improve over the next few months, I guess it would be best to stick with the daily 10mg for the time being in the hope that a calmer patch will come along when I can think about another slow reduction. I have an additional problem looming in the next couple of months, as I need to have my cataracts dealt with and am anxious (there we go again!) that the stress of those will set me back even further on my path towards recovery. All that probably means that I will have to hold back on any major reduction plan until that is all behind me.

[DorsetLady PMRGCAuk volunteer in reply to Greenlife]

Don’t get stressed about cataracts - many have them done whilst on Pred… I was at 9mg or thereabouts when I had mine done - well one, [no point in other one, as no sight in right eye].

I was a bit apprehensive, but it had to be done if I wanted to get on with life, so just accepted that… and actually is a very quick procedure, no pain… worst bit was the drops beforehand and the waiting and wondering… but that soon passes.

But if you are concerned probably best to leave tapering until all done and dusted…

[Greenlife in reply to DorsetLady]

Thank you again, DL for your reassurance re cataracts. That puts my mind at rest and I will approach the procedures with more confidence. Your kind words really help.

[PMRpro Ambassador]

As DL says - never underestimate the effect having a poorly spouse can have on you, especially when it results in you having a lot more to do and think about. It isn't just the "what is going to happen ..." side but the physical effects can be massive, not least because they tend to be things YOU have no control of, getting to a hospital appointment for a given time and then the hanging around can be exhausting.

I would say, don't feel pressured to reduce and speak to your GP about accessing any help you are entitled to. Have you applied for attendance allowance? Is there a local voluntary service offering transport to hospital appointments? How upset are you by your husband's health problems? Would having someone else to talk to help you?

[Greenlife in reply to PMRpro]

Thank you for your thoughtful reply. The effect of having a poorly spouse is not only in having so much more to think about and to do, but also watching him in constant pain, and not being able to help. Unfortunately there is no longer the option to talk to a cosy GP who actually knows who we are - our surgery is as stretched as everyone else, and since the GP’s are constantly changing, or else locums, we have no idea who they are and vice versa! I’m sure I could apply for an attendance allowance, but finance is not really a problem and I dont feel comfortable with applying for a state allowance just because it is there, when we don’t really need it - at least not yet! I am also facing the prospect of cataract operations on both eyes in the next couple of months, which will doubtless cause more stress, but I think I can deal with that more easily since it is my stress and not that of my husband.

Having thought yesterday that the 10mg was not having much effect on my exhaustion, this evening I am beginning to think that it is lifting a bit. So if the cloud continues to clear by the weekend, I am tempted to try a very slow reduction of maybe 1mg over two months, just to see if that works. Having got so far before, I am reluctant to let those adrenals go back to sleep and abandon whatever tiny amount of cortisol they might have begun to produce. Thanks for listening - so good to have the benefit of your experience.

[PMRpro Ambassador in reply to Greenlife]

Perhaps I should also have said that I - and DL - have both been there, caring for very sick husbands, so we do have a slightly different view on it than people who haven't done it.

My GP wasn't a lot of use - always there on the same day if I needed her, but not a lot of use when I requested a home visit for him. And she believed what he was saying - which was a very rosy presentation to say the least! After his death, there was a lot of acknowledgement they could have done better for me, despite Covid lockdowns, but it came down to having the wrong, inexperienced at end of life care, GP. The others had a different MO.

We too weren't financially stuck - but the not knowing how long it will go on meant the help I might have been able to access with more security wasn't sought for fear of not being able to afford other things if push came to shove. My access to ongoing income was limited - and I could hardly sell a property at the time. If you apply now, you know where you are - it is hard to catch up later and the allowances are hardly princely. And whether the stress is yours or his - it all mounts up and the final straw can land at any moment. If you are broken, who is left for him?

[DorsetLady PMRGCAuk volunteer in reply to Greenlife]

Attendance allowance is not just about the money - it recognising that the recipient [in your case your hubby] is not fully able to attend to his own needs, and it may lead to other assistance he may require [not always monetary].

Plus as PMRpro says, there may be a time when you cannot care for him as you would like, and need outside help. You may need it one day in the future, so get the ball rolling…

[Greenlife in reply to DorsetLady]

Thank you DL - I hear what you and PMRP say, and will take your words to heart and get the ball rolling. Thank you once again for thoughtful replies.