Never been this low in 9 and a half years!

[pmrdec112014]

Hi It has been a long time since I have posted anything as have been severely ill with my asthma for the past two and a half years so that has taken all my time.To cut a long story short I am now on biological therapy which has so far changed my life!.

Anyway I am now doing the dead slow method or whatever it is called? And I am now down to nearly 3 mgs pred!!! Never have I got so slow, ever.

I really honestly feel now that the PMR has finally done one after almost 10 years ( in Dec)

I have just read about the 14 week dead slow method. Please can Dorset Lady or some other knowledgeable person enlighten me?

I am thinking as I get nearer 0 it may be an option as the thought of having to go back up at all is not worth thinking about.

Many thanks in advance.

[DorsetLady PMRGCAuk volunteer]

It’s my ultra long taper - included in this link -

healthunlocked.com/pmrgcauk...

[pmrdec112014 in reply to DorsetLady]

Thank you so much. Much appreciated DL.

[PMRpro Ambassador]

That is great and I do hope the PMR has finally gone to sleep for you. But do remember - even 1mg can be the difference between being fine and not so do this last 3mg very very slowly! DL has replied about the slowing of the taper - but any taper can be slowed by repeating each step as many times as you like.

[pmrdec112014 in reply to PMRpro]

Ok thank you PMR Pro. I will go very slowly. I pray I get off the steroids though. It has caused havoc with my cortisol levels currently at 57 nmols/ L so lots of fatigue to contend with. At the start of PMR it was 497nmol/L.Any advice regarding that would be welcome too.

Very many thanks anyway.

[PMRpro Ambassador in reply to pmrdec112014]

Your cortisol levels are fairly immaterial in some ways - the pred that is suppressing adrenal production of cortisol is also a replacement therapy for that lack. There is plenty of info about that under A in the FAQs. It is a normal response of the body to being on longterm pred at above about 8mg/day so not surprising.

The process now is to persuade the HPA axis (hypothalamus, pituitary. adrenal set up) to wake up and get its act together to replace the pred dose as it lowers. That is best done by continuing to taper in the smallest steps possible with long gaps betwee steps down to allow your body time to catch up. Being on a lower dose than you body needs is the only way to achieve it and it does mean for some people that there is immense fatigue to contend with.

And as that pred dose falls, with such a low cortisol level it is unlikely that you have any reserves of adrenal function to contend with emergency situations, Should you feel really unwell. confused, nauseous, don't hesitate to call 999 and explain this is a potential adrenal crisis and you need emergency medical attention. There is a red emergency steroid card available online to carry to inform healthcare professionals that you are steroid dependent.

hweclinicalguidance.nhs.uk/....

SnazzyD has written loads about her journey waiting for her adrenals to wake up.

[pmrdec112014 in reply to PMRpro]

That explains it all very clearly thank you once again. I will have a look at the other info.

[SnazzyD in reply to pmrdec112014]

After your adrenal glands have been suppressed by the excess of steroid in pill form, they can (but not always) take a very long to wake up again. My descent from 3mg to 1mg took 42 weeks, and from 1-0.75 took 15 weeks. It was a year from 1mg to zero. It was a struggle but I got there.

[pmrdec112014 in reply to SnazzyD]

Hi Snazzy DReading that was a bit of a shock as was imagining going down from where I am now to zero would take a few months even though I heeded PMR Pro's warning to go slow.

Was your reduction tapered in relation to your blood cortisol levels or the more physical side effects of reducing.

And what was your indicator for reducing further.

I hope that makes sense!

Many thanks.

[DorsetLady PMRGCAuk volunteer in reply to pmrdec112014]

SnazzyD did really struggle with her adrenals.

It took me about 9 months to get from 3mg to zero, but the longest part was reducing from 0.5mg to zero [4 months].

[pmrdec112014 in reply to DorsetLady]

Hi Dorset Lady.Do you know what your cortisol levels were at this time.

Also did you do a very slow wean due to cortisol levels or physical symptoms of reducing or just that you wanted to go very slowly in the first place to avoid any issues?

Many thanks.

[PMRpro Ambassador in reply to pmrdec112014]

They rarely measure them - symptoms trump everything and nothing except being at too low a level will trigger the switch for the body to make more. If your cortisol levels are OK you won't feel it and it won't encourage more to be produced.

[pmrdec112014 in reply to PMRpro]

Right ok. Thank you.Is there a chance at all that the adrenals don't ever wake up following low cortisol in relation to PMR?

[PMRpro Ambassador in reply to pmrdec112014]

There is but probably relatively rare, But it does take a lot longer than more doctors think. Like a year or more rather than a few months.

[pmrdec112014 in reply to PMRpro]

Ok. Worth knowing then

[DorsetLady PMRGCAuk volunteer in reply to pmrdec112014]

Never had my cortisol levels checked

I had random bouts of fatigue during the drop from 6mg to 3mg which took about 8-9 months at 0.5mg a time. So I really just continued in that vein. A couple of times I stayed on dose for longer than usual - once when I had back issues.

I never had any flares with my GCA all the way through, and I certainly didn’t want to take any unnecessary risks when I got to very low dose.

[pmrdec112014 in reply to DorsetLady]

Ok thank you.

[SnazzyD in reply to pmrdec112014]

You may well do a lot less. This is a very individual journey. The tapering was judged according to symptoms. I had a Synacthen test at 4mg (not great) and 1.5mg (much better) that was all. The Endocrinologist recommended 1mg pee month from 4mg but I wasn’t able to sustain that rate.

[pmrdec112014 in reply to SnazzyD]

Ok thanks. What exactly is the synacthen test for? What does it show? Thanks

[PMRpro Ambassador in reply to pmrdec112014]

How effectively your adrenal glands are able to work - though not whether they are actually reliably doing so in response to day to day events.

[pmrdec112014 in reply to PMRpro]

Ok thanks

[SnazzyD in reply to pmrdec112014]

patient.info/hormones/synac...

This explains it too. It mimics the hormone message from the pituitary gland being sent to the adrenals. Cortisol is then measured to see how the adrenal glands respond.