My wife has had cutaneous lupus for a number of years and throughout she has been taking Hydroxy and Prednisone.
She has gradually reduced the prednisone from 20mg/day to 8 mg currently, but despite many tries seems to be at a sticking point in getting below 8 mg.
She was advised that taking hydrocortisone with prednisone then slowly tapering off prednisone might work for her.
Has anyone had experience with hydrocortisone to taper off prednisone.....?
Thanks for any advice
Expat Ray
What are her problems getting under 8mg? Is it fatigue and other symptoms of adrenal insufficiency or is it a return of her lupus symptoms?
Eight mg is the start of what is called the physiological range of corticosteroids - the amount the body requires to function. When the pred dose is above about this level, natural production of the steroid cortisol is suppressed - the body knows it doesn't need more as it is bad for it. At this stage as the pred dose falls, the adrenal glands must take up production of a top-up but the restart tends to be a bit dithery and stutters so one day it may happen, the next not. Some people feel it at higher doses than others but need lower doses to REALLY get it going. The only way to get it going is to persist at lower doses, taper in very small steps so the body has less to adjust to and be very patient. Endocrinologists often use hydrocortisone, a shorter lived corticosteroid, more like cortisol, which theoretically better stimulates the HPA system (hypothalamus, pituitary, adrenal set-up) to start working again. It is taken 2 or 3 times a day and if your problem is the symptoms of the disease, then it controls them less well. It has similar but different adverse effects and some people just don't settle with it. Pred is also approved for managing adrenal insufficiency but is possibly a slower taper to get it back.
When I say slow taper - I mean 1/2mg at a time, maybe once a month but possibly even slower. You will find loads of info about tapering pred and adrenal function in the FAQs on the PMRGCAuk forum (they are listed alphabetically)
healthunlocked.com/pmrgcauk...
Hello PMRpPMRpro thank you for your response......it is very much appreciated for the clarity and detail you provide and we can only assume you either have a imedical background or you are clearly very well informed/knowledgeable.
As you indicate, the 8mg level has seemed to be a hard stop point for my wife, but your information this is a physiological limit for bodily function we can now understand why that may be.
My wife does not have Systemic lupus and her flares when reducing Pred to the 8mg level or beyond are manifest in a malar rash, a degree of facial inflammation/redness and fatigue which we find from blood tests is manifest from a temporary reduction in her Neutrophils and Platelets levels.
Your indication that small Pred reductions and persistence is well noted, and in the past, as you can no doubt understand, my wife and myself to this point have been very disturbed her flares at these lower pred levels but have invariably backed up to a higher level of Pred to overcome the symptoms within no more than a few days.
Your clarity on the matter of hydrocortisone is also very well appreciated as none of her doctors have explained this in the past.
You have given us all the information we need to plan forward and bounce this off her doctors to develop a forward treatment strategy to get her pred down to a safer zone of a max of 5mng and for that we are immensely thankful.....👍😀.
We will also visit the forum you suggest to further improve our understanding
Rgds
ExpatRay
I personally have been on pred for 16 years, and even with the use of a biologic drug can only get to 7mg, lower than that and the symptoms of my underlying disease resurface and lower again I start to experience signs of adrenal insufficiency. Like me, my rheumy is more interested in quality of life than forcing me to a lower dose of pred and we are both happy that I am stable at 7mg and the biologic. I don't have any significant identifiable problems despite the high accumulated dose of pred - it is a case of balancing one against the other. If it were me, I'd be wanting a realistic assessment of HER situation on a not exceedingly high dose of pred that is allowing her to live well. Once you try forcing a reduction and get into a yoyo situation with dose it tends to get harder and harder.
DOES she have any pred-related problems? Many can be mitigated or dealt with effectively. Do feel you can ask advice on the other forum, or just here if you prefer.
It is good you have reached a happy medium in your treatment between quality of life Vs a reasonably low level of medication strength.
As i have suggested we are looking into pairing hydrocortisol with her Pred and whilst we understand hydrocortisol is a cortisteroid also and is much weaker than Pred on a mg to mg basis, we understand that hydrocortisol in fact stimilates the hipocampus and pituatory gland, unlike Pred, which in turn helps to stimulate the adrenals into starting to produce cortisol as opposed to using Pred alone which does not seem tyo have this characteristic. We also understand hydrocortisol has some different side effects however(headaches, blistering) and we are looking at that very closely.
any advice you may have in that regard from your experience or forum engagement would be welcomed.
Rgds
Expat Ray
I think from my understanding that it is less that it STIMULATES the HPA axis as that the absence of corticosteroid DOES NOT SUPPRESS IT. Which is not at all the same thing. It is the absence of corticosteroid in the blood that triggers the brain to send signals to the adrenals to produce cortisol. But I might be wrong.
I liken it to having a central heating system with the thermostat in the same room you have a wood-burning stove. While the stove is running, the room is warm, the thermostat is satisfied and demands no more heat. As the stove burns down and the room cools, a demand for a bit of support from the boiler is put out. But it does depend on how sensitive the thermostat is.
Hydrocortisone has a shorter half life than pred and is out of the system more quickly so the periods with no steroid present are longer. But you are likely to lose that perk if you mix it with pred plus the antiinflammatory effect witl also be less.
I can only say that I am late 70’s and the 5mg Pred (Hydroxychloroquine too) I take daily keeps me ticking over and when I suffer through the cold weather we increase this slightly and taper off in Spring. BUT we are all different and it is QUALITY OF LIFE we need.
Anyone have a new perspective on prednisone “ok” dose?
Methotrexate & Prednisone Side-effects?:
Prednisone 
