Being such an old hat at this.....: You’d think I... - PMRGCAuk

PMRGCAuk

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Being such an old hat at this.....

Constance13 profile image
12 Replies

You’d think I would know by now, but.....

I have been down to 3mg for a couple of months and thought I’d try something different. I took my dose at 10 pm usually, so I thought I would try 2mg (coated) at night and 1mg (pred uncoated) in the morning. Did it 4 times but this morning “bang” - I couldn’t even walk from the bathroom to the sitting room, my husband had to come and collect me.😒

It is soooo difficult to know whether, and “how” to reduce at this stage.

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Constance13 profile image
Constance13
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12 Replies
SheffieldJane profile image
SheffieldJane

I can see your thinking. It might have worked. Perhaps other factors contributed, especially if you are living a more normal life. What have you done with your dose now?

Constance13 profile image
Constance13 in reply toSheffieldJane

“Normal life” - whatever is that?😏

Just happened this morning so sretched out on recliner.

Hi Constance

Maybe 3mg is where you need to be at least for now, get yourself back to feeling ‘normal’ before you consider reducing again. Obviously your body is used to the 3mg at night so the best option would be some 2.5mg coated & use them to see how you go using one of the Slow Methods, or even alternate nights 3/2.5mg. You obviously missed the 1mg so 3mg for now until you feel up to trying again.

Best Wishes

Mrs N 💅🏼

PMRpro profile image
PMRproAmbassador in reply to

I think Constance is on Lodotra/Rayos. You can have 5, 2 and 1mg and they can't be cut.

in reply toPMRpro

Ah! Another Plan Foiled! Drat!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Constance,

Sorry to hear about your latest setback. I guess your body doesn’t like the “new” regime you’ve given it. Why did you change it, if you were okay at 3mg? And have you gone back to “old” routine?

You might find you need an extra mg or two to get back on track.

Then, all you can do really is a very slow taper - either DSNS or mine and in as small a step as possible - 0.5mg at a time.

Maybe best not to tinker if a system’s working. 🤨

Constance13 profile image
Constance13 in reply toDorsetLady

It’s a failure of us all “tinkering”! Thought I’d give it a try. I was stuck on 5mg for months, now stuck on 3mg.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toConstance13

Fine, but at 3mg you’re not getting any side effects and if 3mg is what you need, it’s what you need. Look at PMRpro for example, we can’t all get to zero.

As for “tinkering” - I can recall being told by a neighbour (S/Sgt in REME) many years ago- “no matter what it is, if it’s working, don’t tinker with it!” 😉

CT-5012 profile image
CT-5012 in reply toDorsetLady

If its not broken don’t mend it. 😂

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toCT-5012

🤔

PMRpro profile image
PMRproAmbassador

At 3mg that works pretty well Constance - I wouldn't bother. Really.

If it aint broke.... don't fix it.

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