Tiredness tapering to 9

[Lclmlbls]

I am almost at the end of my 2nd week of tapering to 9mg pred, following Dorset Lady’s 5 week plan. During the last few days I have been very tired and fallen asleep almost every time I’ve sat down.

I understand from all I read that my own adrenaline won’t kick in until I drop to around 7.5mg so wasn’t expecting this reaction at 9.

Is this something that will improve as I get used to the lower dose?

I’m also in the process of reducing from 20mg to 10mg daily Omeprazole.

Grateful as always for any help.

[DorsetLady PMRGCAuk volunteer]

We do quote 7.5mg as being a ‘problem’ dose , but that is an average - so it can start higher in some people -

This link explains more fully -healthunlocked.com/pmrgcauk...

You could use the slightly longer 7 week plan, if it is adrenals it does just take time, resting when necessary, and patience…

However do make sure there is nothing else going on that could account for sudden fatigue.

[Lclmlbls in reply to DorsetLady]

Many thanks for your reply

[PMRpro Ambassador]

Lots of people start to feel an effect from about 10mg - and very occasionally even higher.

[Lclmlbls]

Many thanks for your reply

[cmToddy]

Hi. I found reducing from 10 to 9 very difficult and it took me about 2 months to style on 9. I stuck it out but from then on dropped by 1/2 mg every two weeks. Next difficult drop was 7 to 6.5 so I decided to there for 7 weeks due to drop to 6 on Saturday this week. Sometimes I think we panic and worry but I find me sticking on the dose you are aiming for usually works. I should say it was never a pain problem, just fatigue dizziness and a bit of depression.

[Lclmlbls in reply to cmToddy]

Thanks for your reply. Mine isn’t a pain problem either, just incredibly tired. Sometimes the tiredness is justified (like today when entertaining 9 & 11 year old grandsons) and sometimes for no apparent reason!

[cmToddy in reply to Lclmlbls]

It’s tough and frustrating but I hope you feel better soon

[Lclmlbls in reply to cmToddy]

Thank you, me too! Hope you are doing well.

[Predderman2020]

I had those thresholds over the last 18 months. At 10. Then 8. 4.5, and then 3.25. Still stuck at 3.25. Unmistakable horror when you hit the barriers. But I decided (thanks to all on site!) that just suffering is dangerous, unproductive and a phenomenal waste of my life (and my family's).

[Lclmlbls in reply to Predderman2020]

thanks for your reply. When you say suffering is dangerous - what did you do to stop it? Abandon the tapering?

[Predderman2020 in reply to Lclmlbls]

Yes - I believe I am following PMRPro in this, in that having unresolved inflammation is very bad for the body, causing damage with (up to) GCA being among the worst. Not inevitable obviously but not something I want to worry about! GOOGLE says - 'The suffix -itis indicates a condition involving inflammation or infection. Some examples of these conditions include nephritis, diverticulitis, osteoarthritis, conjunctivitis, and vulvovaginitis' . Personally (again following PMRPro, I believe), I have tried to identify the minimum dose that just manages to control the disease, and challenge that level by going lower when I feel I can. Not always successfully, like most people on the forum. Taking pred is obviously not desirable in itself (I have had one cataract replacement already and the other scheduled in November), but at the dose I am on I feel it's the best I can do, for the best life I can have.

[Grammy80]

I'm just popping in to offer you encouragement. At present I'm down to 3 mg but I can feel your frustration when it's so hard to put one foot in front of the other and all you want to do is lay down! Just stay with it and look at it as a step that has to be processed to get to the other side.. And you will!💞

[Lclmlbls]

Thanks. There seems to be no sense nor reason to it, some days I feel ok and others so tired!

[5goFlotilla]

Just a bit of info that may interest you I took Lansoprazole for 14 months while taking Prednisolone ,still on that ,the fatigue was off the scale at 6mg.

I have some medical background and realised PPI can stop the absorption of Vit. B 12 so had the ANP at my practice check it and it was in the deficient zone . I have subsequently stopped the PPI and had 6 loading dose injections over 2 weeks and what a difference !

As others have said we need to have medical support that isn’t blinkered and checking that something else isn’t going on .

Your post was sometime ago I hope you are feeling a little better .

[Lclmlbls]

Thanks for your response. Not feeling quite so tired now but that has been replaced with with what I can only describe as depression.

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

Sorry to hear that, but as described in the link I sent in earlier reply it can also be part of adrenals struggling. But obviously if it gets too bad please seek medical advice - there are options out there to help… and not just medication 🌸

[Lclmlbls in reply to DorsetLady]

Thank you. I have GP appointment next week to discuss aspects of memory loss (which could be caused by pred, covid or age) and a pain in my left buttock when walking (maybe caused by tapering), and breathlessness on walking - perhaps I should have booked a double session!

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

A double session - you should be so lucky 😊.. hope you get some sensible answers- and most importantly some treatment…