Weaning Hydrocortisone (aka Cortef)

[bertiedog]

@Kimmy Postural Orthostatic Tachycardia Syndrome or dysautonomia. Mine is the adrenergic sort.

Pam

 

[KimmyB]

@Kimmy Postural Orthostatic Tachycardia Syndrome or dysautonomia. Mine is the adrenergic sort.

Pam

That doesn't sound pleasant, @bertiedog! What is the cause?

 

[Ema]

Are you even able to get out of bed?? My gosh, woman. How does a person get all of those conditions????

Yes, I do get out of bed. But in limited amounts.

I think a person gets all these conditions when their immune system goes haywire. And once you have one, you're open to everything.

I also have hypogammaglobulinemia which means low IgG levels in general. This also opens a person up to infections.

How long have you been ill, and what have your symptoms been?

I've had periods of sickness interspersed with remission periods lasting many years since my late teens. I'm 40 now. This last relapse started in 2009 and has been the longest lasting ever. I'm trying not to get discouraged that there isn't another remission in store for me.

Dizziness is my most incapacitating symptom. Migraines. And fatigue, of course. There are/have been others but those are the constants.

Did you have any negative effects from it at all?

No, but I come from the Addison's background where the research has shown conclusively that replacing low levels of DHEA is only beneficial and contributes to sense of well being.

The licorice root will keep the cortisol active longer.

And also licorice has aldosterone like effects. It's just a great herb for weaning and adrenal support in my experience.

 

[bertiedog]

@KimmyB I have heard its secondary to another illness, in my case Lyme and/or adrenal insufficiency.

Pam

 

[KimmyB]

I also have hypogammaglobulinemia which means low IgG levels in general. This also opens a person up to infections.

Would this be a genetic condition? Or something you contracted in another way?

No, but I come from the Addison's background where the research has shown conclusively that replacing low levels of DHEA is only beneficial and contributes to sense of well being.

My DHEA is low right now, I'm told HC can suppress it, as can low thyroid. It was previously quite high, so I'm not really sure what caused the drop in the past couple of years.

My care team is of the opinion -- and I actually do share this opinion -- that these hormones will sort themselves out once we get the underlying infection/virus/pathogen identified and start to treat it.

And also licorice has aldosterone like effects. It's just a great herb for weaning and adrenal support in my experience.

That's interesting... I know of a couple of people who have tried licorice, and have had a horrible experience with it... namely, pounding/racing heart and super high BP. I know that licorice extends the life of cortisol in the body, so I'm not sure why it affects BP/heart like that.

One thing I did notice, @Ema... although I was certainly feeling less than optimal as I weaned, one thing that was improving here and there was my non-existent sex drive. As I weaned down, it's like something that had been suppressed was no longer being pushed down. And now that i'm back up to 17.5... gone. Totally gone.

The hair is still coming out but not in clumps like on Tuesday, it's back to what it was before Tuesday... which is to say, still a lot but not handfuls at a time. I'm starting to wonder if this isn't an immune flare of some sort. I know hair loss is usually thyroid, and given the thyroid/adrenal connection, it would seem likely that my hair loss has to do with the low cortisol affecting the thyroid hormones and their ability to do their job (limited as it is, anyway). But it's impossible to know, which is the worst part of this.

 

[KimmyB]

Hi everyone... figured I'd give an update, a month later. So, it turns out that I DO have Lyme disease. Got my results back and I have Lyme. Finally, the past 6.5 years of illness make sense.

As for the Hydrocortisone wean, which is why I started this thread in the first place: I'm back down to 10mg of HC and actually feeling pretty good. I'm having the usual weaning symptoms (usual for me: increased heart rate the first few days after a drop, strained vision for a couple of days after the decrease, iratic bowels for a couple days after the drop, and always one or two days of extreme fatigue). But quite honestly, I feel WAY better this time around and we've been able to speed up the wean with no ill effects to this point. My doctor is abundantly cautious about this wean but even she is seeing that speeding it up hasn't produced any terrible effects so she's guiding me to make this quicker. It's working well so far, so I'm going with it.

It turns out part of the reason I wasn't feeling well earlier in the wean is that I was needing potassium quite badly and wasn't on any at all. As soon as I added it, I felt more human again and have continued to feel fairly normal ever since. Thank God.

My hair continues to fall out... I'm trying to keep the stress in check, because I know stress makes it worse. I'm just praying that once I'm off this drug, the loss will stop. PRAYING, I tell you. (Meantime, @Ema, I'm taking your suggestion and going to look at wigs this week... just to make myself feel better about what happens if the loss doesn't stop.)

I won't begin Lyme treatment until I'm fully off HC, so hoping it's sooner rather than later so I can get started. Reason for this is, during this wean, my body will not accept ANY changes to my regimen whatsoever. I tried to change probiotics, my body freaked out... tried to add zinc, my body freaked out... even used a different shampoo than normal, and my body freaked out. Among other things. So, my practitioner has agreed that leaving everything alone during the rest of the wean is safest.

Does anyone know WHY this would be happening? I'm not sensitive to changes like this ever... this is incredibly bizarre, indeed.