ANCA booklet -- may answer many of our questions!

[KathyB]

Hi all -- As I have been continuing to research info on WG, I found this ANCA booklet (in .pdf file) from UNC. It's in a language I can understand and will use when discussing WG with my doctors. Here's the link!

http://www.unckidneycenter.org/vascbrochure_NoWGA.pdf

KB

[delorisdoe]

Most excellent!!!

[annekat]

A useful guide written in easy to understand language. But I question something I read there: it said that corticosteroids are similar to a hormone produced by the kidneys. I thought that hormone was produced by the adrenal glands. And I never heard of the kidneys producing any hormones (?).

Anne

[Al]

A useful guide written in easy to understand language. But I question something I read there: it said that corticosteroids are similar to a hormone produced by the kidneys. I thought that hormone was produced by the adrenal glands. And I never heard of the kidneys producing any hormones (?).

Anne

I think that is typo, Anne. But the kidneys do produce three hormones: Vitamin D, bradykinin, and erythropoietin (EPO). Vitamin D is important for a lot of cellular functions, including calciu, regulation. EPO tells the blood marrow to make red blood cells. Stressed kidneys present a bottlenck to these hormones, leading to anemia, for one thing. Failure of te kinin system has all sorts of implication for regulating body chemistry and blood pressure.

Al

[annekat]

I think that is typo, Anne. But the kidneys do produce three hormones: Vitamin D, bradykinin, and erythropoietin (EPO). Vitamin D is important for a lot of cellular functions, including calciu, regulation. EPO tells the blood marrow to make red blood cells. Stressed kidneys present a bottlenck to these hormones, leading to anemia, for one thing. Failure of te kinin system has all sorts of implication for regulating body chemistry and blood pressure.

Al Well, if it's a typo, it's a pretty big one.... seems like it should have been caught with a good proofreading. Interesting to know, though, that the kidneys do produce some hormones.

Anne

[KathyB]

I found another great explanation of the ANCA tests themselves and have learned more. Also increased number of questions I'll have with my specialists! ANCA Test | Vasculitis Foundation (http://www.vasculitisfoundation.org/ANCAtest)

KB

[Al]

I found another great explanation of the ANCA tests themselves and have learned more. Also increased number of questions I'll have with my specialists! ANCA Test | Vasculitis Foundation (http://www.vasculitisfoundation.org/ANCAtest)

KB

These are both good, accessible accounys, Kathy. Thanks for sharing the links! And it always helps to know this stuff when visiting the doctor!

Al

[maria garcia]

Thanks for sharing. I always learn something new.

[annekat]

I found another great explanation of the ANCA tests themselves and have learned more. Also increased number of questions I'll have with my specialists! ANCA Test | Vasculitis Foundation (http://www.vasculitisfoundation.org/ANCAtest)

KB Yes, thanks for sharing both helpful links. We need all the help we can get in understanding this thing we have.

Anne

[delorisdoe]

I did not even notice the kidney hormone reference but even still I find this to be one of the most straight forward explanations i have ever read.

[Nancy-S]

That is great. Thank you! I've only skimmed through it and can't wait to really read it.

[Nancy-S]

I just read it. Glad I did. See, this whole time I thought this antibody I had was similar to the antibody that people get with vaccines. My little brain had a hard time understanding that. As I understand it now, anti = against, fighting, healthy cells. Definitely different from what I was trying to comprehend.

[Kami]

Thank you! This is wonderful!!

[pberggren1]

I did not even notice the kidney hormone reference but even still I find this to be one of the most straight forward explanations i have ever read.

I might just have to read this then......lol.

[KathyB]

I'm not a science or math person (lame excuse I've used my whole life!), so simple and clear explanations sure help. I like visuals, too! Glad I could contribute to others who have been helping me!!

[Lightwarrior]

A useful guide written in easy to understand language. But I question something I read there: it said that corticosteroids are similar to a hormone produced by the kidneys. I thought that hormone was produced by the adrenal glands. And I never heard of the kidneys producing any hormones (?).

Anne

Since the adrenal glands sit on top of the kidneys, perhaps they were trying not to get too technical??

[Lightwarrior]

[QUOTE=KathyB;53786]Hi all -- As I have been continuing to research info on WG, I found this ANCA booklet (in .pdf file) from UNC. It's in a language I can understand and will use when discussing WG with my doctors. Here's the link!

Great resource, thank you for sharing.

[Sangye]

Good booklet, though I don't like the typical rosy picture it paints about going into long remissions after finishing the initial treatment. It isn't honest about the flare rate.

[annekat]

Since the adrenal glands sit on top of the kidneys, perhaps they were trying not to get too technical?? Are they connected to the kidneys in such a way as to possibly be considered part of them? Do they work together? Or do they just sit on top of them, having entirely different functions? I don't think it would be too technical to identify the adrenal glands correctly as the producers of the steroids/hormones we are talking about, since that's what we've all been hearing about as what shuts down when we take high dose pred for a long time, etc.

Anne

[vdub]

it said that corticosteroids are similar to a hormone produced by the kidneys
Cortisol. (http://en.wikipedia.org/wiki/Cortisol)...

I believe cortisol is the hormone they may have been referring to. I know a little about cortisol because of my no-pit situation.

The anterior pituitary produces a hormone called ACTH (http://en.wikipedia.org/wiki/Adrenocorticotropic_hormone). ACTH, in turn, tells the adrenal glands (which sit on top kidneys) to produce cortisol. Hydrocortisone is a synthetic replacement for cortisol, so I am on cortef (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000611/) for the duration of my time....

The reason we have to taper off from steroids is because, when we are on them, the adrenals sense that they don't have to make any more cortisol, so they sort of shut down. The taper period gives a wake-up call to the adrenals. Prednisone withdrawal: Why taper down slowly? - MayoClinic.com (http://www.mayoclinic.com/health/prednisone-withdrawal/AN01624)

Theoretically, when I am put on prednisone (if ever) and then taken off of it, I should not have to taper, because my adrenal glands are "essentially" toast and don't make any cortisol anyway. I say "essentially", because, in reality, my adrenals are fine -- they just don't have any ACTH to make them work, so they are effectively non-players.

[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? (http://www.csrf.net/dr_answers/question:_what_are_the_differences_between_hydroco rtisone_cortisone_acetate_prednisone_and_dexametha sone.php)

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

Cushing's (http://www.bing.com/health/article/mayo-MADS00470/Cushing's-syndrome?q=cushing%27s+syndrome&qpvt=cushings+disease) 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 (http://en.wikipedia.org/wiki/Hypocortisolism) 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 (http://www.differencebetween.net/science/health/difference-between-adrenal-medulla-and-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 (http://en.wikipedia.org/wiki/Hypocortisolism) -- My med bracelet says Pan Hypo Pit (http://en.wikipedia.org/wiki/Hypopituitarism)....

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 (http://en.wikipedia.org/wiki/Hypothyroidism) -- the under production or my case, no production of thyroid hormones.

Hypogonadism (http://en.wikipedia.org/wiki/Hypogonadism) -- little no production of testosterone (none in my case)

Diabetes insipidus (http://en.wikipedia.org/wiki/Diabetes_insipidus)-- no production of the antidiuretic hormone arginine vasopressin

Pernicious anemia (http://en.wikipedia.org/wiki/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!