CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I feel good on Cortef and needed it, based on my saliva tests and years of fighting TBD. My practitioner is not keen on the physiologic replacement doses recommended by STTM and safe uses of cortisol by Dr Jeffries (up to 40mg).
Hydrocortisone is 1/4 as strong as prednisone.
So on my low dose taken in the AM I would feel great and then could actually feel it leave my system. Very short lived. Then I woukd get tachy and brain fog etc and TBD symptoms woukd get worse again. Then I started getting adrenaline surges and hypoglycemia etc (all symptoms of low cortisol) and I got spooked and weaned off, replaced by bovine cortex.
On this stuff I felt ok initially but now I cannot lift my head from the pillow in the AM and am back to tachycardia all day long and no good response to treatment.
I need to give Dr Jeffries dose a try and not ramp up, just do it. I know I need it but am spooked. My friend who used to post here did not respond to tx until he started the full replacement dosages and is now so much better on tx. That is my inspiration.
Has anyone done the full 25-40 mg Cortef recommend and had good response to treatment, and been ok with weaning off? I get adrenaline surges in response to logging on to my computer so I know I need it. But without the support of a doc, who wants me to do 5 mg, it's hard. You'd think I woukd have learned by now.
We don't hear too much about this here. I wonder where all the adrenal fatigued people are?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Under dosing and ramping up, according to the great STTM site, is not recommended. They say that under dosing creates more problems which are often mistaken for over dosing by the docs, bc the body sees the small doses and downregulates it's own production, which results in even less. You have to go for it!
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
posted
Weaning off?? Next to impossible for me. I really really want to get off of it.
It will cause issues with candida, believe me. But maybe that is not nearly as bad as your other symptoms. (There are other problems down the line, which is why I want to get off of it.)
I take 10 mg per day.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Hubby ramped up to either 30 or 40 mg (can't remember which) over a week or two once and then decreased it back to 5 mg over about a 6 month period. This was back when we really didn't know what else to try and before aggressive bart or babs treatment.
He really didn't see much improvement or have too many problems adjusting the doses. At the time he was trying to see if the cortef would help with brain inflammation.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Why does it cause issues w candida? Not sure how those would be related ? I have heard people on LDN talking about a flare of it when starting that but no correlation to candida?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: what do (typical) STEROIDS actually do to us? And how they can be a disaster for those with lyme. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Why does it cause issues w candida? Not sure how those would be related ? I have heard people on LDN talking about a flare of it when starting that but no correlation to candida?
- CD57 .. because it is hydrocortisone.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
High doses definitely can cause candida. The hospital docs agreed that the high dose steroids they put hubby on were what caused his oral thrush.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I have to take more HC to be functional.
We have to keep in mind that our bodies may not be producing ANY cortisol necessary for life.
If a person is on thyroid medication, more HC is necessary as they counteract each other.
If one has infection, a healthy person's body will produce more cortisol in response. If we are not producing any or not enough, we need to stress dose HC.
Also, prednisone is long acting. HC is short acting. Our bodies use it up quickly. That is a difference right there. Our bodies use it up.
A person taking prednisone may have healthy levels of cortisol so that would lead to the negative side effects. i.e. candida, lowered immune system.
Cortisol is necessary for a good immune system amongst so many other systems.
I'm hoping some day soon this med. will be available here. If someone can find it elsewhere, please post.
Plenadren
The active substance in Plenadren, hydrocortisone, is the pharmaceutical form of cortisol, the main steroid hormone secreted by the adrenal gland.
Hydrocortisone replaces the natural cortisol that is missing in patients with adrenal insufficiency. It has been used in medicines for several decades.
Because it is available as a modified-release tablet, Plenadren releases hydrocortisone over a longer period of time allowing for a once daily dosing.
It is taken early in the morning since the amount of cortisol in the blood normally increases early in the morning in healthy people.
BTW, Currently I take 20 mg in the morning (just recently was able to decrease that dose from 30 mg) 15 mg- 10- 5 Totaling 50 mg/day now. I don't like having to take it either but I know I need it. It has made a huge difference in quality of life for me.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Wow, that looks good. Is it available in other countries, perhaps Canada?
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Supposed to be available in Europe. It does look good.
I searched quite a bit to no avail.
Maybe you or someone else will have better luck. I'll keep looking too as able.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
I thought if our bodies were not producing any cortisol we would be full out Addisonian crisis with fevers and mental status changes and profoundly low blood pressure??
Chipster
Posts: 44 | From Yes | Registered: Jan 2014
| IP: Logged |
CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Pocono, isn't there a danger of atrophy to adrenals on dosages that high? On the other hand, I did read that it is detrimental to adrenals to dose too low also. I can't get out of bed or raise head from pillow without the Cortef and seem to need it again at noon now.
How do I find a doctor that understands all this>
I get severely tachycardic when it dips too low and blood pressure gets low too.
Posts: 3528 | From US | Registered: Apr 2007
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Chipster - I initially had really low blood pressure and at one point years later,developed high blood pressure.
Since treating with HC, I'm only needing half of my BP medication and not always every day. I'm believing that for me (high BP when it happened) was life's stress that I couldn't handle due to the inability to handle ANY stress.
Because the symptoms of Addison's disease progress slowly, they are usually ignored until a stressful event like an illness or an accident causes them to become worse.
This is called an addisonian crisis, or acute adrenal insufficiency. In most cases, symptoms are severe enough that patients seek medical treatment before a crisis occurs.
However, in about 25 percent of patients, symptoms of Addison's disease first appear during an addisonian crisis.
Common Addisonian Crisis Symptoms
Common addisonian crisis symptoms include:
•Sudden penetrating pain in the lower back, abdomen, or legs •Severe vomiting and diarrhea •Dehydration •Low blood pressure •Loss of consciousness.
If left untreated, an addisonian crisis can be fatal.
CD 57 - I don't know about the too high of a dose causing atrophy. All I know is I can't function without it either.
I could never manage doing anything after a few hours if I only did one dose daily.
Your heart rate goes up trying to compensate for your low blood pressure.
I'll be back with resources to find a good doctor. I had posted it on another's thread and will post here when I find it.
I found mine by calling pharmacies asking if they knew of a doctor who uses bio-identical hormones.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
Chipster - Please see the bottom link. It discusses important points in regards to use of HC. I'm on DHEA and thyroid med. so that may also explain my higher dose. I didn't read the DHEA part prior to this.
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
MannaMe
Frequent Contributor (1K+ posts)
Member # 33330
posted
What I'm interested in learning is how to support our body's ability to make it's own hormones....
It will take longer than using cortisol, but then there won't be the troubles of trying to wean off or down.
Wouldn't that be the better way to try first? Unless of course, you have complete adrenal failure.
Posts: 2251 | From USA | Registered: Aug 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Frown]](frown.gif)
Printer-friendly view of this topic