Reaching Zero Pred. A Reminder.

[jinasc]

When your PMR or GCA decides to go into remission, please remember that

you must carry your Steroid Warning Card for 1 year. If anything untoward happens the medical people need to know.

So always carry that card and wear your necklace or bracelet for 12 months at least.

[123-go]

Good advice, jinsac.

[Viveka]

Thanks for this jinasc, I am sure we won't get this advice from anywhere else.

Do you or does anyone have any information about why this is?

[jinasc in reply to Viveka]

No, I don't, someone else may.

My medics told me and so did other medics when I had an operation and had just been off pred for 6 months.

[PMRpro Ambassador in reply to Viveka]

It is not just whether the adrenal glands themselves are functioning and able to produce cortisol that matters - there is a very complex feedback system involving what is called the HPA axis and several organs/glands/hormones. To get them into proper and reliable balance takes time and it is said in the medical literature that can take up to a year even when totally off pred so nothing is interfering with the process.

This is one reference:

ncbi.nlm.nih.gov/pmc/articl...

and this is another:

journals.plos.org/plosone/a...

As the second paper says - there is a wide variation, presumably due to the vast range of actual pathways for individual patients but only about 5% have permanent poor function.

[Viveka in reply to PMRpro]

Thank you for this. We have very little idea about the complexities under the bonnet. Thinking about you and sending good wishes. XXX

[Viveka]

Thanks, I' ve got a consultant appointment coming up so I'll ask him.

[jinasc]

No need to ask your Rheumy now. I thought PMRpro would know and she has explained it well. I had been told previously , but brain does not always remember it all.