Weaning pred question

[marta]

I had a feeling you'd jump on this one particular stat Phil, as we've had this discussion before. I don't just pull numbers out of a hat, the 30 - 40,000 is a number that kept coming up when I was doing the initial research on Wegener's.
Here are some links to studies and info that I have not personally authored. The numbers come out to somewhere in the 1 in 30 to 40,000 overall, but if you look at it from a yearly incidence rate it's much much higher than one in 40,000

Prevalence and incidence of Wegener's granul... [Arthritis Rheum. 2009] - PubMed - NCBI
The epidemiology of Wegener's granulomatosis... [Arthritis Rheum. 1996] - PubMed - NCBI
http://rheumatology.oxfordjournals.o...35/2/142.short
Full Text: Diagnosis of Wegener's Granulomatosis in the ANCA Era
Wegener's Granulomatosis | Doctor | Patient UK
Prevalence and Incidence of Wegener's granulomatosis - RightDiagnosis.com
Wegener's Granulomatosis: Incidence

Grab a calculator and give'er.

[pberggren1]

I have already talked to 3 different Rheumies in Regina and they all have between 20 to 40 Wegs patients. Regina is around 190,000 and of course has much more in surrounding area. These are just 3 Rheumies and said there are many other docs that have Wegs patients as well in Regina. And those are the ones that we know about. In Swift Current there are at least 4 Weggies and we have a pop of around 15,000. My doc even says that according to his practice back in the UK the prevalance of Wegs was around one in 5K.

[marta]

yioi!

Anyways, I'd love to hear if any of you have tried and if so had any success with adrenal boosters or anything else. I imagine even the natural ones might have some sort of steroid type something - I know, pretty technical and scientific.

Thanks for all of your help.

[Sangye]

Marta, I do not recommend using supplements for the adrenals until you get below 5 mg pred-- and then only with the guidance and supervision of a holistic physician. I've tried several times over the last few years to use adrenal support supplements, but even in tiny doses they caused the Wegs dog to spring to life. Since I've been on HC, I've been able to use VERY small daily doses of a particular supplement as I taper. But it is really dicey, as the Wegs dog is starting to wake up from the rtx sleep.

Assuming that it's not Wegs activity creeping up, your symptoms may be due to the pred taper or it may be that your recent exertion is the culprit. Holistically speaking, pred is deeply depleting to the body. On higher doses most people don't feel the depletion, they feel energized. But expending a lot of energy at that time causes you to crash later. I've seen this happen so many times in this group. I don't know how you can avoid overdoing it when your body doesn't tell you that you are. Not only does pred "give" you energy, but it masks pain from overexertion. Fortunately for me, higher dose of pred makes me feel weaker or I'd definitely do the same thing.

[Al]

Marta, as far as statistics are concerned, you could both be right: The widely published figures (30-40 per million) could easily be too low because of under diagnosing. Furthermore, there are true clusters, for unknown reasons (perhaps something about the plains of Saskatchewan...? That and a higher sensitivity about Regina diagnosticians....?).

At any rate, here's what I think is happening to you: Your body thinks its daily fix of steroids is about 7mg, say. Coming down from that would require your adrenals to be coming back to life, which has evidently not happened. No harm yet to that, other than the fatigue, but it would be serious if the adrenals remain inactive once you get below this amount.

The other factor is the fact that you have a lot on your shoulders. Much of that is self-imposed, of course, just because that is who you are. Also, young Hana is in your charge so much of the time. There is a reason that parenting is a young persons' sport: We are built to take the stress better in our 20s. As an older and much sicker Mama than most, the inherent stresses are going to do nastier things. A lot pf pred might mask this, but now they can't shield you.

Marta, do you feel unusually sleepy in the afternoon? If so, that's a sign that your body can't tolerate the lower dose. If it's just fatigue due to the pred taper it should ease up within a few days--less than one week.

For what it's worth, when I tried going below than 8 mg, it wasn't afternoon fatigue that did me in, but morning fatigue. Now, I am usually low IQ in the morning, but at that time, I would eat breakfast, then have to go back to bed. I wouldn't begin to function productively till late afternoon. This lasted until I wnt back to 10 mg. So we'll try this all again....

Al

[marta]

Thanks Sangye. I knew you'd have the right answer on this. My gut was telling me no, but I'm grasping at straws and it seemed like a good idea when Bri brought it up. I'll stay away and talk to my doc next time I see her - it'll be end of May but I think I might be singing this song for a while. Thanks for the note too. <3 U - like the young kids type.

Al, did you just call me old? Ha ha ha - it's OK though, I can take it cuz I'm pretty unreal for an old, sick mamma (we need to have a knee slapping emoticon - I would insert it here if we did.) We (my mom and I) joke about child rearing being a young person's sport often. She had me when she was 18, and I had my daughter when I was 40 - slight difference. There is also a huge difference in how much attention the kid gets - she's got me wrapped around her tiny little finger, whereas when I was a kid, well, it was 'old school'.

My doc told me that the adrenals usually don't start waking up until 5mg, so mentally I was prepared to suck it up until there, but now I'm thinking there will need to be extra sucking it up. I've been quite ready for the 'hit by the truck' feeling, having read many other tapering woes, but yesterday was particularly bad, and I also read someone post the same experience at 2.5mg, and I panicked thinking that this will go on for at least as long as I was pregnant, and it freaked me out completely. I was pretty non functioning yesterday. My IQ level never seems to get up to par any more, and I too wake up tired. I seem to get my best sleep in the late night/early morning and if I could sleep in that would be best for how my body operates, but that is just not feasible right now - well it is RIGHT NOW because it's spring break.

[Al]

Hey, Marta, I would never be so insensitive as to call you "old"--or so disingenuous, given my own age. I called you older. Moreover, note, please: I left that comparative hanging. However, I will observe that my mother turned 40 just after I was born, and I know that I gave her far more grief than she needed. However, I further observe that she lived into her 90s, with her marble collection intact and even growing.

I, too, hate it when my mind goes foggy. This mostly happens in the morning. Funnily enough, around about bedtime--that is, when the lights go off, the brain goes sproing! But, oh--those pred dreams as dawn sets in!

It is a good sign that you can still write in your characteristically babbly style. Yet your nagging "cold" concerns me. This is not a good thing for a Weggie. Garlic soup is my own recommendation--that and rest, if that is possible during spring break.

Al

[marta]

Al, I know that you wouldn't, I just couldn't resist because of earlier conversations we've had. It was a nudge nudge wink wink kinda thing. Your momma sounds like a cool cookie after my own heart.

I know exactly what you mean. Yesterday I literally couldn't walk from one side of my house to the other (and I live in a 780ft square house, so not a whole lot of distance) without feeling like I've ran a race, I went to bed with a body fully exhausted and couldn't fall asleep because my brain just wont stop going - got up and watched TV for a few hours. Here I am tonight, tired and at 11:13pm typing away.

Babbly indeed, I don't think the Wegs Dog could ever knock that out of me. I honestly try to keep it short, but it seems to be an impossibility.

Lastly, mmmmm... garlic soup. Recipe please. I eat a lot of garlic, Eastern European background and all, but I've never had garlic soup. Tell me more.

Rest, I'll work on. I promise.

m

[Al]

My mother was pretty amazing, Marta, continually re-inventing herself, even in her last months. Quite the example.

Here's how I make garlic soup: I use a low-sodium yellow curry paste (this is hard to find; you can use the saltier stuff if you need to), heated in some sesame oil with minced garlic to taste. When hot, I cut it with "Lite" coconut milk and low-sodium vegetable broth, letting it come to a near-boil, whisking often. (I buy these at Trader Joe's in quantity; the prices are very good there, but you can make your own, of course.) If I am in the mood for more protein, I throw in some tofu slices. Then I squeeze in some fresh lime. That's all! But I add some toppings: sliced green onions, cilantro, and slightly roasted peanuts or cashews. Easy and delicious! My wife loves it, which is a good for my domestic tranquility. It does make my head sweat, but, somehow or other, I have managed to avoid all colds and such for more than a year. You know, garlic is not good for dogs; maybe it will keep the Wegs fella from getting too frisky.

Al

[marta]

I'm trying it out tomorrow. That sounds delicious. Thanks.

Of course your momma was pretty amazing, look at the son she raised. No nudging nor winking on this statement.

Good night brotha. Now I'll try and go to sleep.