It was going so well: Hello again, I was tapering... - PMRGCAuk

PMRGCAuk

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It was going so well

Southmead profile image
17 Replies

Hello again,

I was tapering along quite nicely, hovering around 4.5 mgs, then the below 5mg flare curse struck. I went back to 5mg, with no avail. In desperation I went up to 10 mg where I am now.

Trouble is I still feel terrible, fatigue, headache etc, and the 10mg is not working. When I was first diagnosed in 2014 I was put on 20mg of Pred, and it worked immediatly.

Should I bite the bullet go up to 20 mg? Or add another 5mg to increase my dosage? Its very frustrating, as I'm at a loss. I would like not to have to go back to square one after all these years.

As always thank you..

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Southmead profile image
Southmead
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17 Replies
Mansplainer101 profile image
Mansplainer101

You would be well advised to check with your primary care physician rather than go adjusting dosage on your own. You could cause more problems than you are already experiencing.

Southmead profile image
Southmead in reply to Mansplainer101

Good point, thanks.

Bcol profile image
Bcol

Hi there, I think the standard flare advice is to add 5mg to what you were on, which you have now done, but you may need to give it a few days to work.

Southmead profile image
Southmead in reply to Bcol

Thank you, will soldier on with the 5mg increase and hope for the best.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

How long have you been at 10mg? As you were advised in previous post you can stay at that dose for up to 14 days without jeopardising your following reduction (assuming it is a usual flare).

If you haven’t got the flare under control within that period, you do need to discuss with your own doctor rather than increase the Pred yourself -especially as you seem to have issues every time you get to around/below 5mg.

Perhaps you have to accept that 5mg is YOUR lowest achievable dose -but you do need medical input.

Southmead profile image
Southmead in reply to DorsetLady

Now I feel stupid, I double checked the med bottles, only to discover I had gotten the lids mixed up. I mark the 1mg and 5mg, etc. For the past few days I have been taking 2mg, instead of 10mg, no wonder I felt awful. Hopefully redressing the balance willl correct the more severe symptoms, silly me..

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Southmead

Ahh…oh dear. Not the first to mistake tablets, and certainly won’t be the last that’s for sure…😊 but hopefully you can get it sorted now [so just ignore the last few days] and fingers crossed the increased dose works.…

Southmead profile image
Southmead in reply to DorsetLady

At least I know what happens without pred, the 10 mgs had an immediate effect..

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Southmead

Good..

SnazzyD profile image
SnazzyD

Is it the same as other flares? What are all the symptoms? Did it come on suddenly like overnight?

Southmead profile image
Southmead in reply to SnazzyD

Now I feel stupid, I double checked the med bottles, only to discover I had gotten the lids mixed up. I mark the 1mg and 5mg, etc. For the past few days I have been taking 2mg, instead of 10mg, no wonder I felt awful. Hopefully redressing the balance willl correct the more severe symptoms, silly me..

SnazzyD profile image
SnazzyD in reply to Southmead

🤦‍♀️ Ah well, a simple solution at least.

PMRpro profile image
PMRproAmbassador

You need to speak to your doctor - but you do need to give the plus 5mg at least a week and possibly more even if it is just a flare from overshooting the dose you need, And if it keeps on - you need

some investigations.

Southmead profile image
Southmead in reply to PMRpro

Now I feel stupid, I double checked the med bottles, only to discover I had gotten the lids mixed up. I mark the 1mg and 5mg, etc. For the past few days I have been taking 2mg, instead of 10mg, no wonder I felt awful. Hopefully redressing the balance willl correct the more severe symptoms, silly me..

PMRpro profile image
PMRproAmbassador in reply to Southmead

It happens - you aren't the first nor will you be the last. It is one of those situations where the use of a dosette box helps even if you only use it for the pred if you take other things, Take out the 5mg bottle, fill the days with the requisite 5mg tablets, close the bottle and put it away. Then do the same with the 1mg bottle. That will reduce the risk of putting the wrong tops back on! And put numbers on both top and bottle ...

Southmead profile image
Southmead in reply to PMRpro

Thanks, time to get better organized. At least I know what happens without pred, the 10 mgs had an immediate effect..

PMRpro profile image
PMRproAmbassador in reply to Southmead

Good!

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