Conundrums: Cause and effect of pain, difficulty of decision making re prednisolone, timing, tapering, or short term increase?

[allofaquandry]

Many things have come to a head today:

• Today, is a day when it has all got the better of me! A hopefully short term build up of stress ( including a big family event this week with family staying) and I find I'm not coping that well: anxiety and depression and today losing my temper and exhausted. Having worked so hard to get to this level of prednisolone (7mgs) there is an inbuilt resistance to increase it to help cope, be it for a very short term, but on the other hand it might be a good idea?

• Realising that splitting my dose morning and evening does not seem to work. The aches and pains are there in the morning building up and after an hour or so of taking my morning prednisolone then seem to be much improved. Back to the drawing board. I guess I need to go back to 2am for the prednisolone (with some food), which really worked part from the silent reflux and then sit up for some time to let it do its work (trying to avoid exacerbating the silent reflux). I am already taking osmeprazole in the evening to help, and can’t take the prescribed Gaviscon Advance, until 2 hours after taking the prednisolone because of the calcium carbonate content.

And, not a question, but a statement re the ongoing challenge over recent years as various other health issues have reared their head. It is the problem when prescribed several medications long term and short term is trying to identify any symptoms as is this due to PMR/GCA, to the side effects of prednisolone, or of side effects of other medication prescribed long term or other health issues, or just part of being 7 years older than when diagnosed with PMR and GCA.! I am looking forward to hopefully it all settling down!

The above is rather garbled, but had a need to get it down on paper(?) and talk it through rather than going round in circles.

Any comments/advice/thoughts would be welcomed. I know it's just getting through the next few days, I already feel better sharing my conundrums.

Happy Easter xxx

[DorsetLady PMRGCAuk volunteer]

Hi,

As for today and next few days would suggest the flare protocol [short term increase only- then you should be able to drop back down to current dose ] - see this -

healthunlocked.com/pmrgcauk...

.. and delegate as much as possible, people have come to see you, not go to a hotel, so let them help - you don't have to do it all..

Ongoing - maybe try going back to 2am dose, although if you are struggling at 7mg [then although you might not want to hear it- you might need just a bit more]. what is your split dose and timings now.. they may be better adjusted. But leave that for future, just get this flare under control for now.

Unfortunately as we age other issues come to the fore - with or without PMR/Pred - fact of life.. and it sometimes difficult to see the wood for the trees.. but you will get there sometime.

Now, enjoy the company and if you need to slope of for a rest - then do it! The world won't stop... 😼

[allofaquandry in reply to DorsetLady]

Thank you DorsetLady, Lovely reply. It helped me see the wood for the trees. xxx

[allofaquandry in reply to DorsetLady]

PS and thank you for replying so quickly

[PMRpro Ambassador]

I agree with everything DL has said. Especially the fact your have visitors who are not paying for a hotel so YOU don't have to come up to those standards. They are all capable to helping out in some way and if YOU need some peace and quiet, say so. When you live alone or just 2 of you, an invasion by the family can feel like WW3!!! It is noisy, busy and disturbing, And they do things in a different way, at a different time. LET THEM - to quote a self-help book published not so long ago.

melrobbins.com/book/the-let...

I haven't read it, I have seen lots of short reels by her on FB - and even without going the whole hog, the idea of "let them" get on with things is such a relief, it is worth touching on. So they don't do it your way - so what, the pot of tea or whatever will still appear, sooner or later in some form or other. Take a deep breath - and let them get on with it. And take a bit of extra pred to carry you through.

And the rest - you are older than pre-PMR and pred and that does inevitably have a role to play. Use all the help you can get - whether it is a bit more pred, delegation, retreating to your bedroom and locking the door. And just go with the flow. Once the long weekend is over and you have survived, you will feel a lot better.

[allofaquandry in reply to PMRpro]

Thank you PMRpro. I like the idea of "let them" and indeed it has worked past christmases etc when I’m too exhausted. I think this would be a useful mantra for me! They are a great family, and although never orchestrated somehow work wonderfully as a team and get on with it. Neither I or my husband have been great planners or organisers. I think my husband’s 80th got me overwhelmed, when all he really values is a card and family. Other stuff not so easy, including we have a reactive, overprotective, quite large, Romanian street dog (long story) that has experienced far too many changes and I think abuse and goodness knows what. If only he could talk! Not his fault he is as he is and not what we had in mind at our age, however we have him and we will do our best by him, and slowly slowly he will start to relax. Moreover, the essential dog walks actually help keep us mobile. However, it has been stressful making sure he is with someone who knows him and who he knows and who understands him while we have visitors including our grandchildren. Lots of juggling but it looks like it is sorted (fingers crossed). I am now rambling, but felt a need to explain myself/ give some explanation/example of other stress factors. It is quite cathartic writing this down and now I need to let go of it.

So thank you for bearing with me.

xxx

[PMRpro Ambassador in reply to allofaquandry]

Not rambling at all - it is something you needed to get out into the air so it blows away. My niece has a rescue street dog, I think Romanian too, it is her second. Both have been like yours and very difficult. My daughter OTOH has had 3 Podencos, Spanish hunting dogs, and they have been far better to rehabilitate. The first died of bladder cancer - she was an absolute sweetheart (and I don't "do" dogs!), the second had to be rehomed because he tried to eat her cats and that was non-negotiable! Shame after she had done all the hard work with him but he was then fit to go to someone. And Rasta is absolutely nuts and very lovable really.

[allofaquandry in reply to PMRpro]

"get out into the air so it blows away". .....what a lovely expression!

[Body_bonkers]

So much of what you have said resonates with me. When I reached 7mg, felt the best so far - PMR was managed and steroids side effects lessened. In honesty I’m probably suffereing now due to reluctance to shift from that dose. It’s so close to 5mg which is my aim yet so far and had some adrenal issues so did not want fluctuating doses at that point. I convinced myself the pain and stiffness might be adrenal related as under some stress or another cause somehow hidden under higher steroid doses. I’d also doubled my progesterone and blamed that too. In the back of my mind, there is the wrath from the rheumatologist because I’ve not off steroids in two years (ridiculous I know).

I’d suggest increasing your steroid dose. Wanted company is still draining even if they do all the dishes ! Promise you will feel brighter when the pain is relieved. Focus on what makes you feel better for now rather than try and diagnose the cause. It seems a common trait amongst us to meet our own standards but just let things go - rest is priority over anything else

[Angelsmummy]

Hi A,you really do need to make time for yourself.Though family are precious,they can be a pain in the butt sometimes and they need to appreciate that you are not well.I have put a bit of a distance from some family members ,too “ busy” for me to be around,and I am reaping the benefits now big time!As for the lovely dog,I get where you are coming from.I have a very large GSD who is so protective of me ,I have to be very careful when visitors come.Dont think I would ever get burgled!Take time out for yourself,if they care for you ,which I am sure they do,they will understand,and maybe next time suggest a b and b if it gets too much,Happy Easter!xx🐣🌷😜