Update on pberggren

[Alysia]

I am trying to understand all this issue of adrenal crisis
I already added these links in Andy's thread
Acute adrenal crisis: MedlinePlus Medical Encyclopedia
comparing to pred withdrawls:
Steroid Drug Withdrawal Symptoms, Causes, Treatment - Withdrawal symptoms - MedicineNet

I am copying here the part concerning taking "zero" pred every other day:

Taking steroids every other morning gives the body a better chance to recover function. The day without the hormone allows natural stimulation of the hypothalamus and pituitary glands. Thus, alternate-day therapy is ideal, if possible, once the disease is under control. It is still not clear whether new steroids being developed will available to decrease the risks of side effects and HPAA suppression.

[pberggren1]

Yup, it should work. It makes sense, but not this will not work for everyone.

[vdub]

I'll be darned -- I actually know a bit about this subject..... I'll try to make it short.

My Wegener's caused a secondary disease called Granulomatous Hypophysitis, which basically means that the Weg's granuloma attacked and surrounded my pituitary gland and hypothalmus -- it was my one in ten million lottery chance. This situation is very, very rare.

The pituitary is a very important gland in the body's endocrine system, since it controls almost all other endocrine activities to include the thyroid, a couple sex hormones, growth hormone, and ACTH. And, that is just the list for the anterior pit. The posterior pit produces vasopressin, which controls kidney function. And, then there is the hypothalmus, which we won't get into. Bottom line is that if you lose the pit and hypothalmus, you are really screwed.

So the hormone you are interested in is ACTH (you can google it). ACTH controls the adrenal cortex and the secretion of cortisol. Cortisol is an extremely important hormone. Hypoadrenalism (Addison's disease -- think JFK) is seriously bad -- without quick diagnosis and replacement of cortisol, death can occur fairly rapidly (days, maybe less).

So, I haven't answered your question yet, but I'm getting there....

Hypoadrenalism (lack of cortisol) is treated with hydrocortisone, which is a low-potency corticosteroid. However, there are many, many types and strengths of corticosteroids. Normal day-to-day replacement for cortisol would be something like 20mg of cortef, which is hydrocortisone. If the body was under stress, such as surgery or flu, then you need to increase the production of cortisol. Sometimes I will increase mine to as much as 60mg or higher. Immediately after my brain surgery (somewhat traumatic event), I was put on dexamethasone, which is a high-potency corticosteroid (about 25 times more powerful than hydrocortisone).

So then we come to prednisone. Prednisone is 4 times more potent than hydrocortisone. (interesting link -- Approximate relative potency and half-lives of oral corticosteroids (Table 5.34) |Pharmacology)

When you take prednisone and if you have a healthy pit and adrenal gland, then you are artificially replacing the cortisol in your body. The adrenal gland will see that you have more than enough cortisol and will sit in limbo waiting for when it needs to produce more. If you are on pred or any other corticosteroid for a long period of time (less than a week for pred) then the adrenal gland becomes more and more lazy.

The pred taper is used to give the adrenal gland a chance to wake up and start doing it's job. There are many taper schemes and they can vary depending on what type of corticosteroid you are on. For instance, prednisone is not the same as prednisolone or methylprednisolone. Each could have a slightly different taper depending on what your doctor thought was good for you depending on what other health issues you might have.

Bottom line -- always follow your doctors directions unless they are really super out of whack and, then, get the advice of another doctor.

When you are in the taper process, if you have any of the symptoms of Addison's disease (Addison's disease - Wikipedia, the free encyclopedia), then you need to tell your doctor right away.

If I didn't answer your question, let me know....

[RudiK]

My doc reduced my preds intake from 10mg to 7.5mg daily for one month, then down to 5mg daily for one month, and now I'm reducing it by 1mg daily per month. I'm now down to 2mg daily and so far so good, if all goes well I should be off Preds by Jan 2014.

[pwc51]

I have just done a crash dive off pred! The last RTX I had seemed so effective my rheumy decided to stop my pred quickly whilst the RTX was still effective. I had been on 10mg for a while so the reducution was 10mg one day and 7.5 the next for 10 days then 7.5mg for 10 days and so on. Dropping 2.5mg with each step. Today was my last 2.5mg tablet - zero pred from now on, if it sticks. Certainly there were days when changing the dose was making me uncomfortable as my body caught up. Time will tell if I can tolerate zero. The last two times I reached zero I flared, and they were very slow reductions in comparison to this!

[pberggren1]

Thanks vdub. So far the alternating days is going okay but only 4 days in.

[annekat]

I have just done a crash dive off pred! The last RTX I had seemed so effective my rheumy decided to stop my pred quickly whilst the RTX was still effective. I had been on 10mg for a while so the reducution was 10mg one day and 7.5 the next for 10 days then 7.5mg for 10 days and so on. Dropping 2.5mg with each step. Today was my last 2.5mg tablet - zero pred from now on, if it sticks. Certainly there were days when changing the dose was making me uncomfortable as my body caught up. Time will tell if I can tolerate zero. The last two times I reached zero I flared, and they were very slow reductions in comparison to this!

That sounds like an interesting taper, as I'm trying to come down from 10mg. myself. My doc wanted me to alternate 10g. with 5mg. for awhile. I sort of balked at that and he prescribed me a bunch of 1mg. pills so I could play with it myself. The schedule you are on, for starters, anyway, sounds slightly less extreme than what my doc wanted. It sounds worth a try, or some slight variation like going 2mg. with each step instead of 2.5.

[Alysia]

That sounds like an interesting taper, as I'm trying to come down from 10mg. myself. My doc wanted me to alternate 10g. with 5mg. for awhile. I sort of balked at that and he prescribed me a bunch of 1mg. pills so I could play with it myself. The schedule you are on, for starters, anyway, sounds slightly less extreme than what my doc wanted. It sounds worth a try, or some slight variation like going 2mg. with each step instead of 2.5.

WAIT, Anne, be careful. please pay attention to the next points:
in the link it is written that it is ok to taper this way only if pred is not avoiding symptoms !!!
I can tell that for months I am trying to get down from 5mg to 4mg. when I am on 4mg my symptoms are coming back or becoming stronger: joints aching and red, ear inflamations, nose bleeding, more coughing and short of breath, and diarhea (because of my colon involvement). when I am back on 5 mg I feel MUCH better. I don't know why I keep trying to get down.... it is so tempting to be without pred....
the main purpose is not getting off pred but controling wg and avoiding a flare.
Peter wrote that twice, when he got to zero, he flared.
I think we should watch out not only about adrenal crisis but also against flaring.
Phil, I think you should watch out also not to flare. (you prob know it....I am just sharing my concern... )

[pberggren1]

I know you are concerned sweetie but pred alone will not keep me from flaring. It is the Aza and RTX that do that. If I feel I cannot taper by this method I will go back to 10 every day then taper by 2 or 3 mg every couple weeks or so.

[mishb]

WAIT, Anne, be careful. please pay attention to the next points:
in the link it is written that it is ok to taper this way only if pred is not avoiding symptoms !!!
I can tell that for months I am trying to get down from 5mg to 4mg. when I am on 4mg my symptoms are coming back or becoming stronger: joints aching and red, ear inflamations, nose bleeding, more coughing and short of breath, and diarhea (because of my colon involvement). when I am back on 5 mg I feel MUCH better. I don't know why I keep trying to get down.... it is so tempting to be without pred....
the main purpose is not getting off pred but controling wg and avoiding a flare.
Peter wrote that twice, when he got to zero, he flared.
I think we should watch out not only about adrenal crisis but also against flaring.
Phil, I think you should watch out also not to flare. (you prob know it....I am just sharing my concern... )

I am on 3mg at the moment and just can't go to 2mg - too painful, too much of a bloody or blocked nose, red eyes etc.
I have some pain at 3mg but it is tolerable and therefore 3mg is where I stay.
My rheumy did say that I will alternate around the 3,4 or 5mg mark for the rest of my life and I can decide each day, as to how I feel, and what dose I want to take. I will stick to the 3mg for as long as I can.
Sometimes - at least once every two or three weeks, I take 4mg and then back to 3.

I am fairly comfortable with the fact that I am not getting of it....it's not a problem to me, at all.

vdub, you mentioned that prednisone is different from prednisolone. In Australia the tablet is called predsolone, which says contains 100% prednisolone. How is this different from prednisone? and which is the one that everyone else takes, nisone or nisolone?