Re: starting medication :-(

[Guest guest]

So can any one tell me is that a side effect of ENALAPRIL to make people feel

tired/??????,,,because april takes that med as well,,and she stays so sleepy

all the time,,,,,,CRYSTAL

[Guest guest]

Bonnie,,,,april is age 11,,,she is on 5mg of that med,,,thanks for the

info,,,crystal

[Guest guest]

Bonnie,,,,april is age 11,,,she is on 5mg of that med,,,thanks for the

info,,,crystal

[Guest guest]

Hi Bonnie.

Thanks for the kind words.

I had the disease for a great many years, so I guess I just learned to live

with it, at the same time as I learned about it. It was so mild at first

that I never really had that initial shock of learning I had it, like many

others do. The shock came like 25 years later, when I finally had to start

dialysis.

In fact, now that I think about it, the real first shock was during an army

training course one summer, I think in 1989, when a medic checked my blood

pressure on a morning when I had a very bad headache and I had reported to

sick parade. He checked it, and rechecked it, and then he called over his

boss, a navy Chief Petty Officer who took it again himself. I'll never

forget what he said: " Sir, do you know you have very high blood pressure? I

was totally, and I mean, totally stunned, especially when he told me what a

normal BP would be. My BP was 220/120. They had me come in for a recheck the

next morning, rechecking it after having me lie down on a stretcher for half

an hour, and it was the same. A few weeks before, another medic, a corporal,

back at my home unit in a reserve battalion, had found my BP to be 185/110,

but at the time, I attributed it to the stress of running an army transport

company.

I honestly hadn't thought about this kidney disease thing for years until

then. I just assumed it was gone, since nobody seemed to care much about it

at the time. And, a few days later, back home, another shock came, when my

doctor phoned to say he needed to see me. All he had to say was that the

electrocardiogram he did a few days before showed what is called LVH (left

ventricular hypertrophy). This is a heart condition that is kind of risky in

terms of potential for heart attack. Until then, I didn't know I had

anything like that, and I didn't believe I truly had high blood pressure. I

thought I was too physically-fit to have things like that. That's the day I

got my first prescription for blood pressure medication, and I've been on

one medication or more every since.

But anyway, after that, I had a lot of time to get used to the idea. The

last 5 to 10 years, the progression was pretty obvious. Still, you're never

really on dialysis until you're on it. I mean, it's still a shock when the

time comes.

Why did I start the group (which I started first, with a lot of help from

, and also from , whom we don't hear from very often these days,

but still think about), and then the website? Well, there wasn't anything

like what I was looking for myself, so I just went ahead and started it. By

that, I mean as we state in the terms of reference for the group. I didn't

feel we were being well-served by websites that hung their hat on a single

issue or which suggest that nephrologists are hiding treatments from us, or

which didn't take what I and others think is a realistic approach to the

real world experience of being an IgAN patient in the medical world. Let's

just leave it at that, as this can get into some pretty contentious issues.

Pierre

P.S. I've mentioned and , but a great many other people

contributed, both in time and in money. Walt has been a great help, and more

recently Cy, , Connie, and even more recently, Amy. Many other people

who are not currently moderators also made contributions to keep the site

going from year to year, both as donations and in participation. I couldn't

possibly name them all.

Re: starting medication :-(

>

>

> > Pierre, just out of curiousity, after the angioedema with Altace, were

you

> able to take any other ACE I's? Total bummer about the Altace though.

> Angioedema is scary stuff. I have to go off Altace and Avapro tomorrow

and

> start Lisinopril. Way lower dose of Lisinopril, so I'm hoping my B/P

> doesn't sky rocket. I've heard it's a 4:1 ratio from Lisinopril to Altace

> (40 mg of Lisinopril = 10 of Altace) and I'm maxed out on Altace (20

mg/day)

> so I'm a little bit confused why they are starting quite so low on the

> Lisinopril at 17.5 mg/day, especially since I have to go off the Avapro

too.

> Any thoughts, other than just hoping I tolerate the drug OK? I go back to

> Mayo in 2 weeks so no biggie, and I am very comfortable calling them if my

> B/P sky rockets. Just hate to give up the Altace though, cause I've had

> nothing but good success, and very minimal side effects. But if the

research

> on Cellcept works, I'll be soooooo glad to help others who have Ig A and

> hopefully other folks will be

> > able to have this as an option for treatment. Bonnie

> >

>

>

>

> To edit your settings for the group, go to our Yahoo Group

> home page:

> http://groups.yahoo.com/group/iga-nephropathy/

>

> To unsubcribe via email,

> iga-nephropathy-unsubscribe

> Visit our companion website at www.igan.ca. The site is entirely supported

by donations. If you would like to help, go to:

> http://www.igan.ca/id62.htm

>

> Thank you

>

>

>

[Guest guest]

Count me in too for the fibromyalia connection. 's material

grandmother had fibromyalia.

Cy

Re: starting medication :-(

> In a message dated 6/21/2004 1:39:39 PM Pacific Daylight Time,

> wcrosby@... writes:

>

> > I have IGAN, my sister has fibromyalgia.

>

> Does make you wonder Walt. My sister has IgAN too, although a very very

very

> mild form that has not progressed at all in 30 years.

>

>

>

>

>