I am proceeding with DL's slow 5 weeks taper regime, now at 4mg - 3.5mg Pred.
Will I get some physical indication that my Adrenals are working? if not how will I know if they are/are not? If I get to ZERO Pred later this year, do I just stop taking Pred plus the other medicines I take to offset the side effects of Pred?
As I have not been down this road before, I am not sure what to expect at the end of it.
You know your adrenals are working when you get through your day without being exhausted by daily life for no reason. You should feel nothing. If on the other hand you get a good night’s sleep and then feel dog tired, especially after doing something routine, suspect that they are not doing so well. You can have good days followed by feeling like a wet rag for a day afterwards. If every day is a good day, your adrenals are working.
However, even if you are feeling fine be aware that you could have an adrenal crisis if you have a physical challenge that is extra. That could be a big shock, an accident or illness. They say up to a year after stopping Pred. It took me 18 months to feel stable but that was me.
Which medications do you mean?
Thank you
I have all of the above feelings except the "feeling Nothing" and "every day is a good day" I remember having them some time pre Covid but not since - they sound wonderful, OH - I how am I looking forward to having those feelings again., perhaps next year !!!!!
My medication related to Pred prescribed by GP is; - Alendronic Acid 70mg (1 per week) - Omeprazole 20mg (1 per day) prescribed by Rheumalologist ; - Methotrexate 18mg (1 day per week) and Folic Acid 5mg (1 day per week)
Covid has a lot to answer for; you may have to reset what your normal is.
As for stopping those, it depends. Obviously the Rheumy needs to decide about the Methotrexate and if you have that you need the folic acid. Omperazole might be ok to stop with advice but it depends on how sensitive your stomach is to the Pred and if you are still on the AA. If you do stop it, do not stop it dead but trail off slowly so you don’t get rebound acid. You may have to cover yourself with something like Gaviscon in the process. As for AA, you will need to discuss that with the doctor but it can be just stopped rather than tailed off at some point and the benefit can last for up to 5 years. It is suggested that a holiday needs to be taken after 5 years on them anyway but it’s down to a risk assessment. Did you have a DEXA scan at any time?
As SnazzyD has said, more likely to know if they aren’t working!
Yes if everything goes according to plan you can stop other meds.. but there is a big difference between 3.5mg and zero - as many will testify.
So, boring as it may be, take each reduction as it comes, and just be aware it may take up to 12 months after finishing Pred for your adrenals to be back to normal.
SD had a rough time with her’s, both whilst on Pred and afterwards. On the other hand, although mine faffed about a bit with random bouts of fatigue between the doses from 6mg down to 3mg, I can say I didn’t really notice any issues from 3mg to zero or afterwards.
Good luck,
Thank you DL
I have no intention of rushing to zero, I know from all of the information I have gained from this forum that slowly slowly is the only way to go.
As I said, I have not been down this road before so have absolutely no idea what to expect.
I think I am a little concerned, a little intrigued, perhaps even a little scared and totaly in ignorance.
"The End" is obviously not written in stone or even written anywhere, and definitely not on my calender.
Being different for everyone, lets see what the next 6 - 9 months has in store for me.
There is info in the FAQs re adrenals - so might be worth looking at -see link. But as you rightly say we all react slightly differently..
adrenals and cortisol
Useless Adrenals??
Adrenals or Flare?
Adrenals working?
