steroid reduction problems: I reduced to 11.5 mg... - PMRGCAuk

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steroid reduction problems

Sheeplegs profile image
8 Replies

I reduced to 11.5 mg from 12.5 mg 10 days ago. I don’t feel well in a non specific way eg as when having a virus. After showering and dressing I need to sit down for a couple of hours to recover. To be fair this has been the case for weeks. I don’t do any housework ( husband does it) can’t attend yoga which I did x 3 a week when on 15 mg although I relaxed for most of it.

my question is about Dorset Lady slow reduction. I have a copy but is it too late to hop on that and where would I begin?

thank you

Some extra background. My brother suddenly passed awsy 6 March. I hadn’t been able to contact him , required police entry and they found him on landing. He died of pneumonia. Really stressful. I’m NOK and he collected things so house completely full. Major task.

GP doesn’t thing my symptoms are PMR . Having blood tested looking at folic acid B12. Can’t get in til Thursdsy

Sorry for the essay. Thsnks again

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Sheeplegs
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8 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

It’s never to late or too early to follow a slow tapering plan… but I’d question whether 12.5mg was actually quite enough as you say you have been feeling a bit “off’ for weeks…and no wonder following your brother’s passing.

Those of us that have been in similar situation [inc. PMRpro] know you really can’t be trying to taper when dealing with bereavement and all that entails. And it takes a lot longer to recover from than you might think…

Two choices really -

either back to 12.5mg for 2-3 weeks and hope it settles things down… or a short sharp blast of 15mg for a week, then down to 12.5mg. When you can then start a slower tapering - but only when YOU feel able and as discussed in Chat not trying 2.5mg drop, either 1.25mg or 1mg..

Some of us think that 3 weeks at starting dose it’s not enough for many people - 4 weeks is better, 6 weeks the best! But it’s getting doctor to agree .

Best wishes….

random901 profile image
random901

Hi Sheeplegs. I do hope you have some help with clearing and sorting your late brother's house. It is physically and emotionally draining, I know, and found it useful to have siblings and offspring to sort into keep/charity/shredder and bin. My house is in dire need of a clean - the dog and I seem to be creating mess faster than I can keep it wholesome, and I can only manage one shower per week as it's an exhausting business. Thinking of you 🌺

Sheeplegs profile image
Sheeplegs in reply to random901

Thanks . My husband and children are being absolute stars. We have a similar system of bags and you can only sort one house at a time

SheffieldJane profile image
SheffieldJane

I am really sorry about the loss of your brother and the huge stress of dealing with his belongings, coupled with the horrible mixture of grief and guilt. I wouldn’t be tapering for a good while yet. Delegate as much as you can. This is too much for you alone. I would follow DorsetLady’s advice. I’ve been there, it takes its toll.💐

Sheeplegs profile image
Sheeplegs in reply to SheffieldJane

Thank you . They were my thoughts as well but it’s tricky when the GP is encouraging reduction.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sheeplegs

Yes it is - but surely your GP knows your situation, if not then tell them… and that at the moment you don’t need any more stress from them to reduce. Just say, you will reduce when you are able to, and being pressured to do so at the moment is counterproductive and no good for your PMR… if you feel unable to do that, then get your family to make the point for you.

PMRpro profile image
PMRproAmbassador

Never too late!!!

However, I agree with DL. It isn't as simple as the drop from 12,5 to 11.5, it is all the surrounding situation. You proabbly weren't on 15mg for long enouvh - and you probably needed a slightly higher starting dose. There is built-up left-over inflammation and you have absolutely no wiggle room.

I still have to get the shredder out - it is 2 1/2 years since my husband died and the entire office cupboard is untouched! I don't live in the UK and we don't have firms who do shredding and "stuff" like there are in the UK. One of those might be a help if they are willing to let you adjudicate on keep/not keep. But honestly - I would take the things special to you if there are any, let anyone else take what they want and turn the rest over to a house clearance firm. My daughter and her husband have just had to do it for the aunt who has dementia and is now in a home. They are young and fit and it has about finished them.

Sheeplegs profile image
Sheeplegs in reply to PMRpro

You’re right, I have absolutely no resources to deal with extra stress. We have sourced a shredding firm for when we’re ready and have a charity box ready to go. I’m fortunate in that the family are so helpful. I’ve just signed the forms to send to the tax office and already feel a huge wave of relief. The house sorting can now take its time

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