newly diagnosed

[Guest guest]

Welcome to the group. There is a wide range of ages and severity of disease

in the group. Not everyone with IgAN has severe blood pressure problems, but

I certainly am among those who have had pressures like the one you state. No

wonder you had headaches. There is a lot of information available. You can

search and browse the message archives, and you can access Files and

Bookmarks. In addition, there are many people here in similar circumstances.

For what it's worth, I started to have severe BP problems about a decade

ago, and I'm now about 1-2 years away from needing dialysis. It's very, very

important to get your BP under control and keep it there.

Pierre

newly diagnosed

> In august I was diagnosed with IGAN via biopsy. at that time I was

> experiencing headaches x 1 month. My creatinine was 4.3,24hr urine

> showed 2.5gms of protein.My blood pressure reached 240/138 before

> treatment. My dr states if i control my BP and watch my diet,I could

> preserve my kidney function for 5-10yrs. I am 32 yrs old female

> without any children yet. I'm not sure what I am looking to find out

> but would appreciate hearing from someone that is going thru the same.

> thank you

>

>

>

>

[Guest guest]

Welcome to the group. I'm a 24 year old female, and was diagnosed

back in April of last year, also via biopsy (just 4 months prior to

you). What tablets have you been placed on for your BP? Many members

of this group are on ACE Inhibitors as part of their treatment for

their BP. I'm on enalapril, which seems to control mine fairly well

(although I was diagnosed with hypertension when I was 17 - long

before I had any symptoms of IgAN). I also don't have any kids yet,

although I would like to once I'm married. It sounds as though your

kidney function isn't fantastic, as your creatinine is quite high,

but I hope that your kidney function can be preserved for as long as

possible. Anyway, all the best, and if you think of anything you'd

like to ask, feel free to, as I'm sure someone will try and help you

with an answer.

> In august I was diagnosed with IGAN via biopsy. at that time I was

> experiencing headaches x 1 month. My creatinine was 4.3,24hr urine

> showed 2.5gms of protein.My blood pressure reached 240/138 before

> treatment. My dr states if i control my BP and watch my diet,I

could

> preserve my kidney function for 5-10yrs. I am 32 yrs old female

> without any children yet. I'm not sure what I am looking to find

out

> but would appreciate hearing from someone that is going thru the

same.

> thank you

[Guest guest]

Welcome to our group. Your blood pressure was very high indeed.

Preservation of good BP is crucial in the management of IGAN, so I am

pleased that your Dr is aware of this. We are all in relatively the

same boat here, i.e IGANer's. My own is experience is that up until

last week my BP was quite low, but last week it was 180/100, and it

looks likely that I will now have to go on medication for it. I see my

GP tomorrow for a further check, but I do have other health issues, that

can affect my BP.

Once again welcome to our group.

newly diagnosed

In august I was diagnosed with IGAN via biopsy. at that time I was

experiencing headaches x 1 month. My creatinine was 4.3,24hr urine

showed 2.5gms of protein.My blood pressure reached 240/138 before

treatment. My dr states if i control my BP and watch my diet,I could

preserve my kidney function for 5-10yrs. I am 32 yrs old female

without any children yet. I'm not sure what I am looking to find out

but would appreciate hearing from someone that is going thru the same.

thank you

[Guest guest]

You're welcome Rachal.

I certainly think knowledge is important, but, I don't think there's

anything wrong with people not wanting to no more. Just different

personalities and everybody has their own way of dealing with things.

In answer to your questions:

Dealing lightly with IgAN - Yes, it's very, very common. We have to realise

though, that when someone is diagnosed with mild IgAN glomerulonephritis,

it's not really a big problem for most people at that moment. Doctors don't

like to be alarmists when they don't have to. Of course, that's not to say

that IgAN won't become a bigger problem in the future. They actually used to

deal with it even more lightly, because it was considered not to be a very

serious condition.

There is no real norm for fish oil. Even the Mayo clinic study that current

prescribing of fish oil is based on clearly states that optimum dosage

remains to be established. That having been said there is sort of a norm at

the moment: what matters is not the number of capsules you take, but what

the content of the fatty acids EPA and DHA is. It should be about 1.9 g of

eicosapentanoic acid (EPA) and 1.4 g of docosahexanoic acid (DHA). You can't

just go by number of capsules anymore, because different brands contain

different concentrations.

I don't know anything about birth control pills, but as far as I know,

Prozac shouldn't be a problem, except as stated below by the manufacturer:

QUOTE

Because Fluoxetine is subject to hepatic metabolism, lower doses, such as

alternate-day dosing, have been recommended in patients with significant

hepatic impairment. Similar recommendations, because of renal excretion,

have been made for patients with mild to moderate renal failure (where the

glomerular filtration-rate is 10 to 50 ml per minute)- it should not,

however, be used at all in patients with severe renal failure (glomerular

filtration-rate of less than 10 ml per minute).

UNQUOTE

So, perhaps you should discuss this with your doctor. It looks like they are

advising lower dose or alternate day dosing for people with chronic renal

failure who have less than 50% kidney function. Prozac in alternate day

dosing may be enough to do the job, because it has such a long half-life. I

would bet my bottom dollar that most doctors who prescribe Prozac have never

read that.

Pierre

Pneumonia vaccine

> > > >

> > > >

> > > > > I recently had the flu vaccine and my GP has also recommended

> that

> > I

> > > > > have the pneumonia vaccine.

> > > > >

> > > > > Does anyone in the group have an opinion for or against have

the

> > > > > pneumonia vaccine for a person with IGAN?

> > > > >

> > > > > Derrick

> > > > >

> > > > > Sydney, Australia

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

my experience says yes! My " specialist " said much the same " only 5% go to

renal failure " is a phrase that sticks in mymind (as well as my throat now)

and that it was nothing out of the ordinary he didn't even tell me what I

had!! I think that some of them haven't caught up with the post early 90's

rethink and still consider igan benign

Pneumonia vaccine

> > > >

> > > >

> > > > > I recently had the flu vaccine and my GP has also recommended

> that

> > I

> > > > > have the pneumonia vaccine.

> > > > >

> > > > > Does anyone in the group have an opinion for or against have

the

> > > > > pneumonia vaccine for a person with IGAN?

> > > > >

> > > > > Derrick

> > > > >

> > > > > Sydney, Australia

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

Hi members,

I am a 43 year old female. I have very recently been diagnosed with

FM. I started having mild FM symptoms about a year ago after suffering

a back injury (herniated disc). I believe this is what triggered the

FM. Anyway, I began having all of these other s/s,muscle & joint

pains, trouble getting a good night sleep, feeling like someone beat

the %#%* out of me every morning, etc and I kept attributing all of

these other symptoms to my back injury, lack of exercise...whatever.

After doing all of the conservative therapies (PT, Chiropractic,

epidural steroids...) did finally have the back surgery about 2

months ago. After the back surgery, the FM symptoms became full-

blown. I have been going CRAZY. Wondering what the hell was wrong with

me. To make a long story short... I saw a rheumatologist this past

week and her preliminary DX is FM (although many of the usual blood

tests,RF,ANA,Lyme... results are still pending).She said that I have

all of the classic symptoms of FM including the " tender points " . I

have been reading all about FM this past week and I'm exteremely

depressed... one good thing is that NOW I know that I'm not going

CRAZY. Up until 14 months ago (when I hurt my back) I was a very

healthy, very active, busy person. My life has literally been turned

upside- down by all of this.

During my research on FM, I came across this site and figured that

I'd join (I'm not a " support group " sort of person and I feel really

uncomfortable even posting this). But I do think that it might be a

good idea to hear from others who are walking in the " same shoes " . It

has been very difficult dealing with the " but you LOOK great " comments

from people in my life.

Anyway... thanks for letting me vent!

[Guest guest]

Hello newbie, didn't get your name, but welcome to the group. I felt

the same way about " support groups " , but this is more of a family of

friends. You can vent here all you want, ask questions, answer

questions, and you'll never hear anyone hear say " but you look

good " . I guess I was lucky, didn't have the going crazy experience a

lot of fibromites had, when they didn't know what was wrong with

them. 4 years ago I hurt my arm working at a daycare, pitifully,

picking up the lightest toddler in the class!! The pain didn't go

away for about 6 months and the doctors never mentioned fibro. But

my grandma gave me a book on it soon after I hurt myself. I really

didn't think much of it, though I did ask the doctor I was seeing, he

blew me off, of course. But months went by and I'd develope more

symptoms and go back to that book. I've pretty much diagnosed

myself. It sucks, I still need a doctor, I don't have insurance.

I'm thinking after Christmas I can save enough to at least go in for

a diagnosis and some meds. Well, anyhow, welcome, I'm sure you'll

find this group very helpful.

>

> Hi members,

> I am a 43 year old female. I have very recently been diagnosed

with

> FM. >

[Guest guest]

Hiya Evacllhn,

Sorry but no name to call you hugs.... wow all that is a mouth full for sure... Welcome to the group and hope we can help you here to get to know what FMS is about and how you can deal with it and go on with your life. Hugs you for joining us, and for admitting the problems you are having, right now we are strangers to you but soon we all will be friends for you. Hugs you and hope you find what you need here, because I did and I know this group will be here for you. Again welcome

Huggles you lots

Sophia

-------Original Message-------

From: evacllhn

[Guest guest]

Hi Evacllhn (sorry don't know your name) Welcome to the group.. I wasn't a support group person either. But I got to the point.. I needed someone to talk to someone who understood. and knew I wasn't crazy.. This group has saved my life.. I finaly have a place I actualy belong.. You will find that everyone here is wouderful. very caring and always there to listen.. FMS has effected all of our live's.. and turning it up side down, inside out and every which way.. You have deffinatly done the right thing by joining this group.. Again Welcome.. Gentle Hug's Marie Marie A. Roomsburg pretty_n_cute2002@... marieava@...