Hello

[Guest guest]

Hey Dana! Welcome to this great list! =

WOW! It sounds like the doctors aren't even giving one med a chance to work before switching you to another.

I was diagnosed January 1995 with dermatomyositis...cpk at 18,000+ at that time. I was immediately placed on Prednisone. Methotrexate was added six months later. My digestive system quit absorbing the Methotrexate, so I had to begin injecting the med once a week in November 1998. My cpk would fluctuate, but never stay low, so in January 1999 they added Cyclosporine to my list of meds. That was killer stuff...I didn't tolerate that drug well at all. I began suffering from Pleurisy and running high fevers, having night sweats, falling, and I just felt horrible on the stuff. So the Cyclosporine was stopped after 9 months. The Methotrexate made me feel horrible for about 2 days after taking it, and then I also felt icky about a day before I needed another dose. That stuff gave me major headaches and ulcers in my mouth.

The doctors had preached "don't exercise", then they learned that exercise was in fact good...you need to keep what muscle you have and/or build your muscle back up. Well, after 5 years of not exercising, I am definitely needing to build back up! = I have no strength, but it'll come. They do ask that I don't exercise a couple of days before I do blood work, as exercising for anyone, will show an increase in their cpk. They also don't want me doing so much in a workout that I am sore...take it slow and easy. So far, so good...I can do slow and easy.

But I did finally say enough is enough already with the meds...I stopped ALL meds March of this year. I feel so much better...I didn't realize how horrible Prednisone and Methotrexate were making me feel...but they kept me feeling wasted. I feel so much more spunkier, just not strong though.

The Prednisone was a pain for my brain, lack of concentration, thought, memories, I didn't sleep well at night because of it, and it also has hurt my bones. My bone density scans just got worse and worse with each passing year. The Methotrexate had already began it's damage on my liver, so with all of the negatives with the drugs, I decided it would be best to get off of the stuff for a while. I feel your body gets used to them and they no longer work. Luckily, so far, so good. I am tired and weak, but not icky feeling from the meds. My major symptoms aren't showing up, so I believe that is a good thing. At the time I was diagnosed, I had a rash in my eye, arthritis in my hands and Reynaud's too, psoriasis on my hands, elbows, and knees, my jaw was popping like crazy, I was so weak and tired, I could absolutely lay down anywhere and fall asleep at any time of the day, my right thigh felt like I had a huge bruise, but there wasn't one there, and I itched like crazy in a few various spots. Off hand, that's all I remember. The itching, arthritis and a touch of psoriasis is back. I can deal with that. I am used to pain and I have a high tolerance for pain, so I don't mind it much. When it does get too bad, I do take a Vioxx though.

Luckily, I only needed a cane twice since I've been diagnosed. Both times are when my hips were giving me fits and hurt like the dickens...but other than that, I manage on my own little shuffle. =

Just my opinion, but I would stick with the water aerobics for now...add weights as you are able, but until you are a bit more stable on land, don't take a chance of falling and hurting yourself exercising.

By the way, I am 36 years old, I'll be 37 this year.

Take care and welcome to this great list. =

*karen*

dm

..

[Guest guest]

Hi .... boy, I guess I missed that part about you getting off all

your meds...thats great! I can relate to the Prednisone though. I'm

down to 2mg today and tomorrow I'm going down another 1/2 mg. My

insides feel so much better. They thought my lungs would start to swell

again but I can say that since I've been on the Enbrel it has also

helped with my breathing. Hope it continues that way.

Vicki-PM

[Guest guest]

Hey Vicki,

Well, it was my choice, without my doctors concent to stop all meds.. I was sick and tired of putting all of that toxic junk into my body. I kept saying "We want to have children, when will I get off of this stuff?"...the answer, they increased the meds! Sooooooooooo....I said, enough is enough. I quit the Methotrexate March 6 and I cancelled my appointments with my Dallas doctor for both the March 29 and the April 17 dates. On April 3 I stopped taking the Prednisone and everything else. I did see my local doctor on May 2 and told him that I had stopped all meds, he understood and supported me on my decision. He said had he been my primary doctor, he would have stopped them for me as well. I have been on heavy doses for over 5 years and it's not helping.

After I stopped my meds, I learned how to meditate and that helps tremendously with the pain. My cpk went from 3500 on Feb.14 to 7300 on May 2, the meds just never kept it below the 3200 range for the past year. The doctor I saw in Tulsa, OK who is supposedly a specialist in myositis said that he doesn't concentrate on the cpk anyway...

At this point, I am ready to buck their system and ways of doing things and do my own. I'm not getting any younger, we have no children and have wanted children sooooooooo much. We want to have a chance to give it a try on our own and if we cannot have them, we will want to adopt. And we need to get a move on it too since I'll be 37 this year and my husband just made 42. =

I go to see my local doctor again on June 5...I'll keep you all posted with what goes on then. =

*karen*

dm

..

[Guest guest]

oh toot! I meant to say...I am sooooo tickled you are getting so low on the Prednisone!!! yippeeeeeeee!

=

*karen*

dm

Re: Hello

Hi .... boy, I guess I missed that part about you getting off allyour meds...thats great! I can relate to the Prednisone though. I'mdown to 2mg today and tomorrow I'm going down another 1/2 mg. Myinsides feel so much better. They thought my lungs would start to swellagain but I can say that since I've been on the Enbrel it has alsohelped with my breathing. Hope it continues that way. Vicki-PM

..

[Guest guest]

Dear Dana,

What a rough road you've been on. My prayers are with you. Right now I

am on Prednisone and Methotrexate injections. The Methotrexate hasn't wiped

me out, but I know some people who have had that experience. I hope your

new treatment is successful. Keep your chin up! (Actually, we know that

getting--or keeping--ANYTHING up when you're flared is an adventure )

Ann-Marie

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

--

Fun facts to know and share--I'm 36 also. I turn 37 next month.

1963 must have been a good year

Ann-Marie--MCTD/PM

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Hi ... I think you did the right thing for the right reason. I

think if you just take it easy and eat right you have a good chance at

getting pregnant. Also, your cpk level is just to show that you have

inflammation in your muscles. I do hope you tapered off on the

prednisone though. Going to fast can be very harmful for an individual.

As of this morning I'm now down to 1.5mg of prednisone....HEE HAW

Have you picked out an OBGYN that knows about your condition? And, last

question, did your doctor tell you when it was a good time, as far as

getting all the drugs out of your system, to get pregnant?

Ok now, don't forget that PRACTICE makes perfect....LOL... so practice,

practice, practice....!!!

Vicki-PM

[Guest guest]

Hey Dana,

I have heard of myositis in dogs too. There is a dog that I know of via the internet that has dermatomyositis. His has been treated and brought into remission with the Prednisone...lucky guy!

When I was on the Cyclosporine, I was on 200 mg daily. 100 mg in the morning and 100 mg in the evening. It was killer stuff to me. YUCK! I was given permission to stop taking it this past December.

Hey Vicki,

Yes, I realize that going off of the Prednisone too fast is not a good thing, but I dropped from

20 mg daily to 0 mg daily. I was just fed up with it all. It upset my Dad (he's a physician) and my local doctor greatly, but since I handled it all right, what could they say. = Well, they did call me a 'bad girl'.

I have a wonderful OBGYN. She has been my doctor forever. I wanted the best and she is the best here and also a high risk pregnancy doctor. She is also the one who I went to when things didn't seem right for me...ie: the rash in my eye, arthritic hands, psoriasis, feeling bruised on my muscles, jaw popping, sleeping everyday during the day for at least two hours...she is the one who ran all sorts of test and then made an appointment for me to see an Internal Specialist. She saw the red flag and acted rather quickly. I see her July 21. Maybe she'll be able to give me the go ahead then...I just don't know.

Hey Ann-Marie,

What a GREAT year you were born in too! =

the MDA stands for Muscular Dystrophy Association. They are supposedly there to help myositis patients too. I just haven't seen any help from them personally. :'(

Don't get too bummed out over the moon face...hopefully soon enough you will be able to come down off of the stuff and begin seeing bone structure again.

=

Hi ,

I hate to hear about your x-rays...that sounds rough. Hang in there and nap as much as you need to! The 'specialist' in Tulsa, OK told me to get at least 10-12 hours of sleep each night and a 2 hour nap during the day. I told him there isn't a problem there...I sleep like that already. =

Please keep us posted on your blood work and how things go for you.

Take care everyone.

*karen*

dm

..

[Guest guest]

Dear Everyone,

Hi! I am home and West Virginia was great! We had terrific weather! My

only " faux pas " was hiking a little too long--we both felt like we were

about to keel over, but nothing that a little Diet Coke and air conditioning

couldn't cure. We then rode the ski lift UP the mountain (and back

down)--what a view! When we got to the top a woman asked if we had hiked

up--I don't think so!!!!!!!

When I got home I had good news waiting--my CPK is down to 206 so I get to

cut back my Prednisone to 20 mg. My CPK hasn't been this low in over 2

years--I am dancing a jig. I see my rheumatologist again at the beginning

of July, so I am hoping to be able to keep tapering. On a more philosophical

note--the love/hate relationship with Prednisone is so real. I hate the

side effects, but it DID manage to bring my CPK from 3300 to 206 in 4

months--not bad...

Have a good day!

Ann-Marie

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

Ann-Marie...so glad to have you back and that you enjoyed yourself.

That is wonderful about your CPK.... I guess we can call you a normal

gal now...lol

Vicki-PM

[Guest guest]

Cari

Have a great time here in sunny Orlando. I will be at Sea World on Sunday.

Going to try and do it without the wheelchair this time. Will just take it

slow I guess !!! Give me a buzz if ya get a chance.

You Can Never Have Peace.......

Until You Have All The Pieces

[Guest guest]

Hi all

Well, I overdid and have been in hibernation

for awhile with a real ATTITUDE!!....not

helped by the fact that my daughter & son

in law were here for a few days and I had

to cook.....bummer!!......beginning to feel

human again so thought I would pop in

and say hi to everyone.....have a good

weekend

Teddi

[Guest guest]

,

We will be a the contemporary resort from Aug. 8th -

Aug. 13th. We have evenings free and if it would be

at all possible to get together, that would be great.

I would love to meet in person! Our hotel number is

and the reservation is under me, Cari

Dorsey. Call me if you can!

Cari

--- catzmeowz@... wrote:

> Cari

> Have a great time here in sunny Orlando. I will be

> at Sea World on Sunday.

> Going to try and do it without the wheelchair this

> time. Will just take it

> slow I guess !!! Give me a buzz if ya get a chance.

>

> You Can Never Have Peace.......

> Until You Have All The Pieces

>

>

>

__________________________________________________

[Guest guest]

Hi Teddi...I'm so glad your on the road to recovery... I can't believe

you, of all people, get an attitude.....lol Hope your doing much better

today and have a restful weekend planned.

Take care,

Vicki-PM

[Guest guest]

Hi,

Please let us know your name, it's nice to be more personal.

Right now you will be having a sad and difficult time; going through

lots of emotions with many questions and unknowns. Trust that we have

all been through it so we are right here with you. Any questions, please

don't hesitate to ask. You will find the internet a valuable source of

information and especially this support group. We have some well

informed individuals who are going through differing stages of this

disease and you will be feeling better about this in due time.

I imagine right now your biggest question is what does the future hold,

and how soon will I find out. You will learn very quickly that everybody

is different and our responses to treatment are different so therefore

there really is not one answer for everyone. But one of the things I

have learnt from this support group is that there is no need to be

afraid of kidney failure and dialysis. Sure, it takes time to adjust and

get used to the whole idea, but you will and you can continue to live

your life with some restrictions depending on your treatment and

frequency.

I hope you find this site supportive and informative.

Leonie (Sydney, Australia).

Diagnosed Sept 2002, symptoms 2 years.

Hello

I am new here. I was just diagnosed with IgAN after a biopsy in mid

December 2002. My Problem was first noticed in October 2002 When my

family Dr. saw some results from my blood work he did not like.

According to my nephologists is is now in late stages for me. He

told me that I have only 27% use of my kidneys. Up until this point

I had no clue that I had a problem. I ate anything I wanted and now

I have to lose over 150 lbs. and watch what I eat. He says this will

help push back the time when I will have to go on dialysis. My

doctor has me on Atacand(blood Pressure), lasix(water Pill), Lopid,

lipitor, and now I think one called faslo(phosphorus). My biggest

problem is what in the world do you eat and be satisfied. I am

getting tired of eating the same thing because I have no clue on what

to do. I eat rice, chicken, turkey, some vegetables, some fruits,

and some pasta. This is what I eat over and over. Can anyone offer

suggestions or is anyone in the same situation.

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

home page:

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

Visit our companion website at www.igan.ca

[Guest guest]

--Thanks for the encouraging information so far. Sorry about

forgetting my name, it is Scot the other part of my identity is my

wife of 10 years Dee. In have 2 boys one 8 and the other 5. I am 35

years old and a large man. I am trying to locate a dietician in my

area but we are a very small rural area, my specialist is 2 hrs

away. I will surf the net for more information and I will check here

everyday that I can for tips and support. Thanks to all here.

Your New Friend,

Scot

[Guest guest]

Hi Scot.

If you have to be on a renal diet, there can be a lot of variety if you know

what you are doing and why, and can get used to cooking things from scratch.

I'll try to post more on this later.

Pierre

Moderator

Re: Hello

> --Thanks for the encouraging information so far. Sorry about

> forgetting my name, it is Scot the other part of my identity is my

> wife of 10 years Dee. In have 2 boys one 8 and the other 5. I am 35

> years old and a large man. I am trying to locate a dietician in my

> area but we are a very small rural area, my specialist is 2 hrs

> away. I will surf the net for more information and I will check here

> everyday that I can for tips and support. Thanks to all here.

>

> Your New Friend,

> Scot

>

>

>

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

> home page:

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

> Visit our companion website at www.igan.ca

>

>

[Guest guest]

Scot,

A good book on kidney diets is Living Well, Eating Well with Kidney Disease,

by Steve Schwab and Dorothy Bartholomay (from Duke Univ.), published in 1997

by Viking Press. It covers non-dialysis and dialysis diets regarding

protein, sodium, potassium, and phosphorus. It also talks about high quality

protein vs. low quality protein. You can probably order it online from

Amazon.com or and Nobles.

Betsy (Colorado)

On 1/10/03 5:23 PM, " Scot and Dee

wrote:

> I am new here. I was just diagnosed with IgAN after a biopsy in mid

> December 2002. My Problem was first noticed in October 2002 When my

> family Dr. saw some results from my blood work he did not like.

> According to my nephologists is is now in late stages for me. He

> told me that I have only 27% use of my kidneys. Up until this point

> I had no clue that I had a problem. I ate anything I wanted and now

> I have to lose over 150 lbs. and watch what I eat. He says this will

> help push back the time when I will have to go on dialysis. My

> doctor has me on Atacand(blood Pressure), lasix(water Pill), Lopid,

> lipitor, and now I think one called faslo(phosphorus). My biggest

> problem is what in the world do you eat and be satisfied. I am

> getting tired of eating the same thing because I have no clue on what

> to do. I eat rice, chicken, turkey, some vegetables, some fruits,

> and some pasta. This is what I eat over and over. Can anyone offer

> suggestions or is anyone in the same situation.

>

>

>

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

> home page:

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

> Visit our companion website at www.igan.ca

>

>

[Guest guest]

-Hello Betsy, Scot

I have checked Amazon they do not stock it, they suggest it is out

of print

-- In iga-nephropathy , Betsy Cabell

<bcabell@m...> wrote:

> Scot,

> A good book on kidney diets is Living Well, Eating Well with

Kidney Disease,

> by Steve Schwab and Dorothy Bartholomay (from Duke Univ.),

published in 1997

> by Viking Press. It covers non-dialysis and dialysis diets

regarding

> protein, sodium, potassium, and phosphorus. It also talks about

high quality

> protein vs. low quality protein. You can probably order it online

from

> Amazon.com or and Nobles.

>

> Betsy (Colorado)

>

> On 1/10/03 5:23 PM, " Scot and Dee <scotndee@y...> " <scotndee@y...>

> wrote:

>

> > I am new here. I was just diagnosed with IgAN after a biopsy in

mid

> > December 2002. My Problem was first noticed in October 2002

When my

> > family Dr. saw some results from my blood work he did not like.

> > According to my nephologists is is now in late stages for me. He

> > told me that I have only 27% use of my kidneys. Up until this

point

> > I had no clue that I had a problem. I ate anything I wanted and

now

> > I have to lose over 150 lbs. and watch what I eat. He says this

will

> > help push back the time when I will have to go on dialysis. My

> > doctor has me on Atacand(blood Pressure), lasix(water Pill),

Lopid,

> > lipitor, and now I think one called faslo(phosphorus). My

biggest

> > problem is what in the world do you eat and be satisfied. I am

> > getting tired of eating the same thing because I have no clue on

what

> > to do. I eat rice, chicken, turkey, some vegetables, some

fruits,

> > and some pasta. This is what I eat over and over. Can anyone

offer

> > suggestions or is anyone in the same situation.

> >

> >

> >

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

> > home page:

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

> > Visit our companion website at www.igan.ca

> >

> >

[Guest guest]

My aunt found a copy of the book at an odd lots store. I don't know

if they had many of them or not (this was almost two years ago when I

was first diagnosed), but it was the sort of place where all the

leftovers of everything from books to nuts to gardon hose was sent to

be sold. I think it was called OCean State Job Lot - or something

kind of like that in Massachusetts.

Good Luck finding it. Also, maybe a major library would have it and

you can copy it?

INgrid

> >

> > > I am new here. I was just diagnosed with IgAN after a biopsy

in

> mid

> > > December 2002. My Problem was first noticed in October 2002

> When my

> > > family Dr. saw some results from my blood work he did not like.

> > > According to my nephologists is is now in late stages for me.

He

> > > told me that I have only 27% use of my kidneys. Up until this

> point

> > > I had no clue that I had a problem. I ate anything I wanted

and

> now

> > > I have to lose over 150 lbs. and watch what I eat. He says

this

> will

> > > help push back the time when I will have to go on dialysis. My

> > > doctor has me on Atacand(blood Pressure), lasix(water Pill),

> Lopid,

> > > lipitor, and now I think one called faslo(phosphorus). My

> biggest

> > > problem is what in the world do you eat and be satisfied. I am

> > > getting tired of eating the same thing because I have no clue

on

> what

> > > to do. I eat rice, chicken, turkey, some vegetables, some

> fruits,

> > > and some pasta. This is what I eat over and over. Can anyone

> offer

> > > suggestions or is anyone in the same situation.

> > >

> > >

> > >

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

> > > home page:

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

> > > Visit our companion website at www.igan.ca

> > >

> > >

[Guest guest]

Sorry about that. You might try half.com. They are part of ebay and have

used books. I actually checked it out from our local library, so maybe you

could find it that way.

Betsy

On 1/11/03 12:47 PM, " paul_holcroft "

wrote:

> -Hello Betsy, Scot

> I have checked Amazon they do not stock it, they suggest it is out

> of print

[Guest guest]

Hi Scot, while you are waiting try www.foodfit.com. Their recipes are quite

tasty and give you ALL the details you might need (sodium, potassium,

phosphorous, cholesterol, fat, protein etc). The iste alos provides general

eating and exercise tips.

"

Reply-To: iga-nephropathy

To: iga-nephropathy

Subject: Re: Hello

Date: Sat, 11 Jan 2003 13:55:48 -0000

--Thanks for the encouraging information so far. Sorry about

forgetting my name, it is Scot the other part of my identity is my

wife of 10 years Dee. In have 2 boys one 8 and the other 5. I am 35

years old and a large man. I am trying to locate a dietician in my

area but we are a very small rural area, my specialist is 2 hrs

away. I will surf the net for more information and I will check here

everyday that I can for tips and support. Thanks to all here.

Your New Friend,

Scot

_________________________________________________________________

MSN 8 with e-mail virus protection service: 2 months FREE*

http://join.msn.com/?page=features/virus

[Guest guest]

Hi VS.

It sounds like you're going to be in the " some kind of mild

glomerulonephritis " stage for a while. I was in that situation for many

years, a long time ago. At least you can take heart in the fact that your

serum creatinine is virtually normal. With diabetes though, you will have to

be doubly sure your blood pressure is very well controlled at all times -

and that high blood pressure doesn't creep up on you unawares. I also was

seen only yearly, as late as 1995, when my serum creatinine was already way

above normal, but still relatively stable.

Pierre

Hello

> I have been a passive reader of this site for about 3 months now and

> I can tell that its been a so informative. I would like to give my

> story here briefly.

>

> I am a 31 year old male and went for a routine blood/urine work in

> september. All along I havebeen generally healthy person with no

> complaints in the past. When the results came back, microscopic

> hematuria and proteinuria was found. GP ordered for IVP to find out

> more and luckily it came out normal. He then ordered for a 24 hour

> protein test. this came out to 950 mg/day. Serum creatinine was at

> 1.1 mg/dl. He asked me to follow up with a neph as well as a

> urologist(for blood in the urine). Urologist did cystoscopy and Urine

> cytology just to make sure and fortunately that came out normal too.

> He asked me to follow up with him six months later.

>

> In my first visit with neph, he did a complete check up and asked me

> to do a blood/urine work again. This time (two months from the first

> one), the serum creatinine came out to 1.3. I am about 174 cms and

> currently weigh around 134 lbs. A kidney ultrasound was also taken

> and that came out normal too.BP all along has been normal (around

> 120/80).Neph told me that this could be igA but ruled out biopsy as

> he felt it was not necessary at this stage.He told me to come back

> after a year as he said nothing more could be done now.

>

> I am not under any medications now. I have a family history of

> diabetes and I have a glucose intelorance. This shows up after meals

> where it hovers between 140 -170. However my fasting glucose level

> has been under good control(less than 109 mg/dl). I had lost about 15

> lbs since september because of keeping too strict on my diet due to

> glucose intolerance. Because of this (I am not sure though!) I am

> having a dull ache( like a muscle pull) around my right pelvis and

> hip area sometimes radiating to the butt muscles. Its gets bothersome

> but not unbearable. Bone x-ray was taken recently and that came out

> normal.

>

> I am not sure what all these means to me. Initially I was shocked as

> nobody in my immediate family has kidney related conditions. With the

> numbers I have presented, how long before I could expect esrd

> striking me ? Hope it does not. I really appreciate your help !

>

> Regards

> VS

>

>

>

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

> home page:

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

> Visit our companion website at www.igan.ca

>

>

[Guest guest]

Hi VS nice to have you post, passive reader is ok by us, but we welcome

messages all the same. You have had all the normal battery of tests

that I have had, except my Urology workup has revealed major problems

with my urinary tract and bladder, which is under control I hasten to

add. I am somewhat perplexed that your nephrologists has ruled out a

biopsy for another year, as this is the only real way to get a definite

diagnosis of IGAN. Far be it from me to challenge your Neph's decision

but I just found it strange, are you ok with this decision? If it were

me I would want this followed up properly, to include a biopsy. Make

sure you get your BP checked regularly ok, key in managing this

condition if indeed you do have it.

The pelvic and bottom pain I have not heard of before, but it sounds to

me like you describe a muscle pain, remember you can get pain in areas

that are not affected, called referred pain, and back or spinal problems

are notorious for giving pain elsewhere. For instance I have

degeneration of the mid thorassic of my spine, yet I get pain in my

shoulder, neck and left leg and hip..a real nuisance like you say but

bearable.

Take care now, and if you have any further questions please ask.

UK Moderator

Hello

I have been a passive reader of this site for about 3 months now and

I can tell that its been a so informative. I would like to give my

story here briefly.

I am a 31 year old male and went for a routine blood/urine work in

september. All along I havebeen generally healthy person with no

complaints in the past. When the results came back, microscopic

hematuria and proteinuria was found. GP ordered for IVP to find out

more and luckily it came out normal. He then ordered for a 24 hour

protein test. this came out to 950 mg/day. Serum creatinine was at

1.1 mg/dl. He asked me to follow up with a neph as well as a

urologist(for blood in the urine). Urologist did cystoscopy and Urine

cytology just to make sure and fortunately that came out normal too.

He asked me to follow up with him six months later.

In my first visit with neph, he did a complete check up and asked me

to do a blood/urine work again. This time (two months from the first

one), the serum creatinine came out to 1.3. I am about 174 cms and

currently weigh around 134 lbs. A kidney ultrasound was also taken

and that came out normal too.BP all along has been normal (around

120/80).Neph told me that this could be igA but ruled out biopsy as

he felt it was not necessary at this stage.He told me to come back

after a year as he said nothing more could be done now.

I am not under any medications now. I have a family history of

diabetes and I have a glucose intelorance. This shows up after meals

where it hovers between 140 -170. However my fasting glucose level

has been under good control(less than 109 mg/dl). I had lost about 15

lbs since september because of keeping too strict on my diet due to

glucose intolerance. Because of this (I am not sure though!) I am

having a dull ache( like a muscle pull) around my right pelvis and

hip area sometimes radiating to the butt muscles. Its gets bothersome

but not unbearable. Bone x-ray was taken recently and that came out

normal.

I am not sure what all these means to me. Initially I was shocked as

nobody in my immediate family has kidney related conditions. With the

numbers I have presented, how long before I could expect esrd

striking me ? Hope it does not. I really appreciate your help !

Regards

VS

[Guest guest]

Hello lin,

Welcome to the home of the monster, I am just sorry that you have to be here. My name is Barbara R and I live in MS. I am 62, married and have 4 children and 6 grandchildren ranging in ages from 2 to 18.

If you have to have IPF I can tell you that this is the place that you want to be. There are some great people on here that have a lot of insight and who care about each other. I don't post often but I did want to let you know that we are out here and that we care. If you have questions post them and if anyone has an answer for you we will sure let you know. We are a praying bunch and always lift each other up in prayer and you will be counted among the ones that will be on my list.

You said that you have been sick for 10 years, but just recently had your OLB. Had they given you a diagnosis of IPF before you had the OLB. I was diagnosed in Jan 2003 and like everyone else I have had a lot of ups and downs but at this time I have stabilized and hopefully I will stay that way through at least June. My youngest daughter is getting married in June and I would like to be able to go to her wedding. She is marring a really great guy that she met on line in the spring of 2000 and she has been living with him in WI since July 2000. She has a 17 year old daughter from her first marriage and her feature husband takes good care of both of them. That is all a mother can hope for isn't it? That her children have happy lives.

Again welcome to this board.

Hugs and Prayers!

Barbara R IPF 1/2003See what's free at AOL.com.