tapering with alternate dose and extreme fatigue - PMRGCAuk

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tapering with alternate dose and extreme fatigue

Bambi1234567 profile image
21 Replies

Since January first have been alternating between 7.5 mg one day and then the next 5 mg. Before this I was steadily on 7.5. Since the alternating I am beyond tired. Has anyone else experienced this and do you think the gap is too much? Also, if this is normal how long should I expect the fatigue to last?

thanks for any and all insight!

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Bambi1234567 profile image
Bambi1234567
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21 Replies
piglette profile image
piglette

Did you really mean you are alternating between 7.5mg and 5mg? That is probably not a good idea if you are, 1mg or 0.5mg drops are enough. You have reached the realms of the deathly fatigue stage when your adrenals have to actually start working again, as the steroids no longer give them enough cortisol. I became zombie like and had trouble raising my hand to scratch my nose even.

Bambi1234567 profile image
Bambi1234567 in reply topiglette

Yes! seeing all the responses I realize now what my Dr. told me to do was way too drastic. thank you

piglette profile image
piglette in reply toBambi1234567

Ah, that might explain it!!

SheffieldJane profile image
SheffieldJane

You are best sticking to 10% drops. My body did not like alternate day drops, I always felt rough on a low dose day. At your stage I was dropping by 0.5 using the DSNS scheme outlined on here in FAQs, very slowly and steadily to stimulate Adrenal recovery.

Bambi1234567 profile image
Bambi1234567 in reply toSheffieldJane

Thank you!

Seacat30 profile image
Seacat30

Agree with the others. That is far too much contrast. I have been going down by 0.5mg since I went below 10mg.

Bambi1234567 profile image
Bambi1234567 in reply toSeacat30

Thank you!

Jackoh profile image
Jackoh

Agree with all the others. Just try dropping half mg every time using the DSNS method- gives your body chance to adjust. Even this is sometimes too fast for me, have to repeat each step twice. 💐

Bambi1234567 profile image
Bambi1234567 in reply toJackoh

Thank you!

SnazzyD profile image
SnazzyD

I agree with the others, the dose difference is too big and alternate day dosing can be hard on the body. I did 0.5mg drops introduced over weeks. Even so fatigue can still be a big part. Go to the FAQ’s on the right of the page and go to the section for A where you’ll find a link all about adrenal glands. This will explain this difficult bit from 7mg.

Bambi1234567 profile image
Bambi1234567 in reply toSnazzyD

Thank you! I will try that as well

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Aaarrg! A recipe for disaster in two fronts - alternate days and a difference of over 30% from day one to day two…

Slower tapering plan - see first link, smaller steps 1mg or even o.5mg and gently nudging adrenals as mentioned by SnazzyD - see second link -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Bambi1234567 profile image
Bambi1234567 in reply toDorsetLady

Thank you! I saw that you have a chart that you can possibly email me. After reading everyone's feedback. I think I should do 7 mg. for four weeks and then drop another .5mg for the next four weeks until my body is comfortable. Or should I stick with the alternate days?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBambi1234567

will send you a chat message -

PMRpro profile image
PMRproAmbassador

No reduction step should be more than 10% of the current dose - and alternating doses that far apart is very hard on the body.

Below 10mg the drops should be no more than 1mg a month - ALL the guidelines say that. But even that is too much for most people. You aren't aiming relentlessly for zero come what may, you are looking for the lowest effective dose that works as well as the starting dose did. The pred cures nothing - it is a management strategy that you will need long term and you are looking for the lowest dose that works for that longer haul. If that dose will be under 5mg or so, the start will go relatively easily, the lower you get, the nearer you are to that dose and it is very easy to overshoot. It is quite likely that 7.5mg is enough, 5mg isn't but you might need 7mg or you might need 5.5mg and the only way to find out is to go slowly, 1/2mg at a time and with time to see.

Bambi1234567 profile image
Bambi1234567 in reply toPMRpro

Thank you so much! this all explains why I feel so awful. Now to find a new plan. Sounds like I should just be lowering .5 mg per month

PMRpro profile image
PMRproAmbassador in reply toBambi1234567

Go back to 7.5mg every day and reduce 1/2mg at a time. There are slowed tapers in the FAQs which you will find helpful

MiniSpec profile image
MiniSpec in reply toBambi1234567

Personally I'd only reduce every two or three months, rather than every month. It takes a looooooong time for your body to adjust to a new dose, so don't try to rush it. You'll only end up yo yoing as you have to keep upping your dose on a regular basis to reduce the pain.

Furthermore, as the others have said on here the maximum you should be reducing by is 10%, and I'd go for a 5% reduction rather than 10% if you can. Buy a pill cutter so that you can quarter your pills. You'll find it's much easier on the body than dropping faster.

Bambi1234567 profile image
Bambi1234567 in reply toMiniSpec

Thank you! I am doing the ultra slow taper plan. very grateful for your response as the others on here.

herdysheep profile image
herdysheep

I wondered if your alternating is due to available tabs? You can get 1mg both plain and enteric coated. Totally agree with others. I don't think my brain, never mind my body could cope with those changes. It took me a while, but I have learnt slow and steady is the only way

Bambi1234567 profile image
Bambi1234567 in reply toherdysheep

The doses were the doctors way of weaning my dosage. I'll have to tell her it was too much! I am going to go much slower and hopefully feel like my old self soon!

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