ANCA booklet -- may answer many of our questions!

[annekat]

Thanks for the interesting and good explanation, vdub. I thought it was cortisol, and was produced by the adrenal glands, but knew nothing about the ACTH and the pituitary, though I may have read and forgotten about it in one of your previous posts.

Now, I'm curious about hydrocortisone. How different is is from prednisone? We'd still have to taper from it (except for you), according to the article. Is it easier on the body than pred in any way, and if so, I wonder why we aren't all taking it? Is there a specific reason they have you on that instead of pred?

Anne

[vdub]

I had never really looked up the difference, so I'm glad you asked the question. Both are glucocorticoids. Hydrocortisone (cortef is the one I take) are short acting, so, I assume, easier to control. Prednisone and dexamethasone (the D*sone I had forgotten) are longer acting. The hydro in hydorcortisone makes you gain water weight.... yuck....

But I certainly don't want to act frauduently and give you the answer as if I knew it. I don't know much, but I do know how to google and I love to read. I got this answer from Cushing's Support & Research Foundation - Question: What are the differences between hydrocortisone, cortisone acetate, prednisone, and dexamethasone? Are there any guidelines as to when one is used versus another?

I weigh my sources pretty carefully. This one came form the Cushing's Support Foundation.

Cushing's disease is where the adrenals are hyperactive and produce too much cortisol. Interestingly enough, one of the symptoms of having cushings is a "buffalo hump" like we get from pred.

Addison's disease is when you have too little cortisol. President Kennedy had Addison's disease. I sort of have Addison's disease. The url on Addison's gives a real good picture of where the adrenals sit in relation to the kidneys and you can see where they might have grouped those hormones in with kidney function.

Difference Between Adrenal Medulla and Adrenal Cortex | Difference Between | Adrenal Medulla vs Adrenal Cortex <--- is another good article on the adrenals, but I don't know what kind of medical expertise "differencebetween.com" has, so take it for what it's worth.

Actually, if you wanted to add it up, I have a number of other diseases which were caused by wegener's. It kind of comes under Jack's saying, "just because you have one bad disease, doesn't mean you can't have others".

My granuloma encapsulated my pituitary and killed my anterior pit, posterior pit, pituitary stock and hypothalmus, so caused.....

Hypopituitarism -- My med bracelet says Pan Hypo Pit....

The lose of the pit caused the effective failure of a number of other glands to include....

Hypocortisolism -- Cushing's disease - failure of the adrenal glands which produce cortisol

Hypothyroidism -- the under production or my case, no production of thyroid hormones.

Hypogonadism -- little no production of testosterone (none in my case)

Diabetes insipidus -- no production of the antidiuretic hormone arginine vasopressin

Pernicious anemia -- caused by a loss of intrinsic factor

[annekat]

Wow, that is a lot of info to digest, and will take some time... thanks for providing it. I seem to remember Sangye saying she was put on hydrocortisone not too long ago, so maybe she can chime in here (forgive me if I'm wrong, Sangye).

Anne

[Al]

Interesting, vdub. My Brother in law also has no pituitary (due to a removal of a tumor on the optic nerve). He takes regular prednisone, along with a battery of regulatory meds to make up for what the pit no longer produces. It seems to be tricky to get the right balances.

One adverse effect of pred that is not discussed widely is that it chews up eyes. That is, it speeds up the aging process in the lenses. I've got cataracts now, that should not have happened for another ten-15 years. I know that opthamologists often use loteprednol, which seems to be easier on eyes, but I have no idea if it is as effective as regular pred for other conditions.

Al

[vdub]

no pituitary (due to a removal of a tumor on the optic nerve)

That is really too bad. I don't wish that situation on anyone. Did he also loose his sight?

[Sangye]

There are 2 main reasons they might put someone on HC instead of pred. 1) To see if the adrenal glands are working you can't do the tests on pred but you can do them on HC. 2) If someone needs to stay on steroids for adrenal issues but not to control Wegs.

Hydrocortisone is a bit less damaging to the body than pred, but it's not as effective as an anti-inflammatory agent. So if you need pred to control Wegs symptoms then you can't switch to HC.

My endocrinologist switched me to HC a few months ago to help me taper off steroids. I wasn't able to get below 2.5 mg pred without completely crashing my adrenals. We didn't know if my adrenals were working at all on the 2.5 mg pred. Once I was on the HC we tested and found out that they are indeed trying to work. The endocrinologist would only do the switch with Dr Seo's okay--- ie, if he confirmed that I didn't need pred to control Wegs.

I don't know about the water-weight thing, vdub. Pred does that pretty badly. I seem to have less swelling on HC. In general I feel much better on it.

[Al]

That is really too bad. I don't wish that situation on anyone. Did he also loose his sight?

No, in fact his vision got a lot better, once the pressure was off the optic nerve. And his gold game (he was a dentist) has improved at the same time. The downside is all that regulation the pit would ordinarily take charge of is now a matter of pharmocological guesswork.

Al

[vdub]

pharmocological guesswork

That's exactly what it is. I carry a tackle box full of different pills around with me and have another box of injectable stuff. I wasn't sure how the airlines would react to my drugs and syringes, but, so far, no one has questioned them or even asked to see my prescriptions....

My endo has done a real good job of balancing the drugs. I feel better now than I have in 4 years, but part of the previous "feeling bad" was undoubtedly due to the GPA. Sometimes it's hard to draw the line between what is getting-old, GPA, or panhypopit. I think GPA turns all of us into hypocondriacs....

[Dirty Don]

I think GPA turns all of us into hypocondriacs....

Agreed...well said...sometimes there is a point of too much awareness...scientists may believe the opposite at times, and most certainly some medical people speak 'over' us...so all the questions we remember when we get home go unquestioned till next time or an astute phone call to get further direction! Duck! As always, no absolutes here, just maybes & gray murky lines to cross...LOL!