Re: Elisabeth

[Guest guest]

Hi beth,

I am sorry you have arthritis on top of IgAN too. Thank you for being so

open about your journey as also has. It always helps to hear personal

experiences from those who have been there.

Your posts are always compassionate and it is evident that you understand.

I wish your Pred taper was not causing the arthritis to flare up.

In a message dated 1/4/2005 6:37:28 PM Pacific Standard Time,

scalanosh@... writes:

> Dear Amy,

>

> I agree with that normal labs do not mean that you don't have some

> form of arthritis that's causing your pain. The problem in rheumatology is

that

> they have to go by clinical exam, not labwork. It can be difficult to get a

> firm diagnosis.

> Don't get me wrong- I 'm hoping that you don't have anything else like RA.

> I'm just saying normal labwork does not exclude it, and in the meantime the

> pain is still there. A good rheumatologist will go by your symptoms, and

> treat you.

> Arthritis, ect are steroid dependent. They get better with prednisone and

> flare up as you taper. Especially any taper from 10 mg down is just plain

> difficult. It just hurts. I keep coming up with the image of a barnacle

being

> scraped off a rock. This image cracks me up as I try to deal with my own

> taper (currently stuck at 6mg!)

>

> As for venting, it is much easier to do here than in front of your family.

> Especially with chronic pain. People who do not have it just plain don't get

> it, even when they really care about you. And in my experience knowing

> about my kidney disease frightens my family even more. Alot of people hear

> kidney disease and think death sentence, even though that's so far from the

truth.

> My first neph even acted that way, and scared me to death- when I'm sitting

> pretty with almost all my kidney function intact, that's ridiculous.

> The kidney disease is peanuts compared to having some kind of arthritis!

> Arthritis just plain hurts.

>

> OK, enough venting. I would definitely encourage you to get the referral to

> a good rheumatologist once your new insurance kicks in. A good one will

> listen to you and treat the pain, at least.

> (You hear anything like " it's all in your head " or anything similar, just

> get out of there fast and get a second opinion. Depression doesn't cause low

> grade fever or cause you to walk with a limp, even though some doctors seem to

> think so!)

>

> Best wishes,

>

> -beth

> (who has a good rheumatologist now)

[Guest guest]

Hi beth,

Yes, my antibody test is part of my transplant evaluation work up. I am

hoping for a preemptive transplant.

In a message dated 1/7/2005 10:02:01 AM Pacific Standard Time,

scalanosh@... writes:

> I'm glad you're back on here and seem to be doing better- you mentioned

> getting an antibody test... is this for a kidney transplant?

> Best wishes,

>

> -beth

[Guest guest]

Dear ,

Thank you so much for your kind words!

I never thought that " compassionate " would be a word to describe me, but

although usually a little blunt I do care and am glad that's coming through.

Having run into obstacle after obstacle with my health these past years, I just

want it to be easier for others in the same boat.

I'm glad you're back on here and seem to be doing better- you mentioned getting

an antibody test... is this for a kidney transplant?

Best wishes,

-beth

[Guest guest]

If the Lisinopril is going to lower your protein spill, it should do so

within the first month or so.

In a message dated 1/12/2005 4:10:00 P.M. Pacific Standard Time,

wahoske12@... writes:

Thank you,

I did start on a low dose and my doctor just up'd it. So this should be

interesting, I have another 24 hr culture next month so I'm curious to see if

it

helps, How fast can it work? ( If it does work). Thanks

>

[Guest guest]

Thank you,

I did start on a low dose and my doctor just up'd it. So this should be

interesting, I have another 24 hr culture next month so I'm curious to see if it

helps, How fast can it work? ( If it does work). Thanks

>

>

> Date: 2005/01/12 Wed PM 05:40:27 GMT

> To: <iga-nephropathy >

> Subject: Re: Went to the doc.

>

>

> Dear ,

>

> I can't speak for Lisonopril as the only ACE inhibitor that I tried was

Enalapril.

> Pierre is right- they've done so many studies with these drugs (we're talking

over 10,000 patients) and overall they were found to be safe.

>

> I was one of the few patients that did have a problem with Enalapril.

> But several things were done wrong by my doctor that could explain this. I

was quickly weaned from Labetolol (another BP med) in 3 days. This is a

betablocker that works by slowing down your heart. Your heart slows down and

this lowers your BP.

> On the fourth day she had me go straight to Enalapril 10 mg . With Enalapril

my heart went from 58 beats a minute to 96 beats a minute. I had extreme

fatigue, eye twitching, muscle weakness , palpitations. Doctor said to stay on

it. I was on for 3 days. Then I developed a massive headache that didn't go

away, even when I stopped the drug.

>

> What's known? ACE inhibitors can cause an underlying connective tissue

disease to flare up. Neph did blood tests for all that before hand that came

back negative. It doesn't mean you don't have it.

>

> What would I have done differently? As soon as the first time I took it I had

problems. I should have stopped it right then and there, and not 3 days later.

Listen to your own body. Also I would have started at a much smaller dose just

to make sure I could tolerate it.

>

> What's the good news? I am now on an ARB drug, Benicar. It's working for my

BP and i've had no problems with it. After my experience with Enalapril, I

thought that would be impossible!

>

> Was Enalapril responsible for me getting the connective tissue disease? Not

completely. It triggered it. The rest is genetic- you're susceptible to it or

not. If Enalapril hadn't triggered it, something else would have.

Unfortunately there is no way to know until you take it. Most people have no

problem with it. Any medicine can cause a bad reaction. The way to deal with

it is to stop the drug.

> A good way to see if you can tolerate it is to start with a small dose and

then gradually work it up.

>

> -beth

>

>

>

>

>

[Guest guest]

Hi beth,

First, sorry I misspelled your name in the last post I'll take that

fantastic news on your kidney labs! Those are fantastic numbers. You are

another

success story with Prednisone use. I am so glad you do not have to worry

about that.

n a message dated 2/3/2005 10:01:29 A.M. Pacific Standard Time,

scalanosh@... writes:

Hi ,

I'm sure I'll adjust to the MTX. On a real positive note, my kidney labs

were great: my creatinine was 0.7 and BUN 15. Thank you prednisone and

Benicar

! It's so nice to not worry about that.

Best wishes,

-beth

[Guest guest]

Hi ,

Thank you so much! And, do not worry about how to spell my name- it's just the

French version of " " - I always say elisabeth with an " S "

Cheers,

beth

[Guest guest]

Hi ,

Thank you so much! And, do not worry about how to spell my name- it's just the

French version of " " - I always say elisabeth with an " S "

Cheers,

beth

[Guest guest]

Hi ,

Thank you so much! And, do not worry about how to spell my name- it's just the

French version of " " - I always say elisabeth with an " S "

Cheers,

beth

[Guest guest]

beth:

(sorry I misspelled your name earlier )

I am glad that you are doing better with the MTX. I didn't know that

Plaquenil intensified the effects, that is a good thing to know. Thanks

for telling me about that. My rheumatologist told me that it is ok to

split the mtx dose as long as you get it all in within 24 hours. However,

I'm with you, at 7.5 mg, that is about the size of a half dose anyway.

Look for them to slowly increase that amount until you get control of

your symptoms.

For Rob, it took about 2 months to start seeing a difference. For me, I

started seeing a difference in about 6 weeks. This summer I went off my

MTX (another long story) and I was off about 3 months before I had a

nasty flare again and had to go back on.

I feel for you having to deal with Iga and still's. They originally

thought Rob had IgA, because it is linked to ankylosing spondylitis, but

it turned out to be Alport syndrome.

Rob is doing well right now. His Cozaar appears to be controlling his

hematuria and proteinuria. Enbrel had made a significant difference in

his joint pain. He goes back to the rheumatologist in June. His hips and

knees still bother him quite a bit, but he is significantly better than

he was this time last year, that is for sure. So we are pleased and

thankful for that.

Best wishes to you too! I am so glad that you are on this board.

Take care, and do keep me posted on how it is going with the meds.

, mom to Rob, 15

On Sat, 5 Feb 2005 08:57:12 -0500 " beth "

writes:

Dear ,

Thank you for sharing your experience with MTX. Today is my second time

and it's going alot better- don't have such a problem! I'm also on Folic

Acid daily.

One thing I will do though is not take Plaquenil tonight- that's the

other one that I'm on. Plaquenil intensifies the effects of the

Methotrexate, and it was hard to get to sleep a week ago.

I'm on such a small dose of MTX (7.5 mg), that it's not a problem to take

it all at once, but thank you for your suggestion. If they up my dose,

I'll definitely split it in half over 2 days.

How long did it take for the MTX to start working for you?

Best wishes to you and Rob,

-beth

[Guest guest]

beth:

(sorry I misspelled your name earlier )

I am glad that you are doing better with the MTX. I didn't know that

Plaquenil intensified the effects, that is a good thing to know. Thanks

for telling me about that. My rheumatologist told me that it is ok to

split the mtx dose as long as you get it all in within 24 hours. However,

I'm with you, at 7.5 mg, that is about the size of a half dose anyway.

Look for them to slowly increase that amount until you get control of

your symptoms.

For Rob, it took about 2 months to start seeing a difference. For me, I

started seeing a difference in about 6 weeks. This summer I went off my

MTX (another long story) and I was off about 3 months before I had a

nasty flare again and had to go back on.

I feel for you having to deal with Iga and still's. They originally

thought Rob had IgA, because it is linked to ankylosing spondylitis, but

it turned out to be Alport syndrome.

Rob is doing well right now. His Cozaar appears to be controlling his

hematuria and proteinuria. Enbrel had made a significant difference in

his joint pain. He goes back to the rheumatologist in June. His hips and

knees still bother him quite a bit, but he is significantly better than

he was this time last year, that is for sure. So we are pleased and

thankful for that.

Best wishes to you too! I am so glad that you are on this board.

Take care, and do keep me posted on how it is going with the meds.

, mom to Rob, 15

On Sat, 5 Feb 2005 08:57:12 -0500 " beth "

writes:

Dear ,

Thank you for sharing your experience with MTX. Today is my second time

and it's going alot better- don't have such a problem! I'm also on Folic

Acid daily.

One thing I will do though is not take Plaquenil tonight- that's the

other one that I'm on. Plaquenil intensifies the effects of the

Methotrexate, and it was hard to get to sleep a week ago.

I'm on such a small dose of MTX (7.5 mg), that it's not a problem to take

it all at once, but thank you for your suggestion. If they up my dose,

I'll definitely split it in half over 2 days.

How long did it take for the MTX to start working for you?

Best wishes to you and Rob,

-beth

[Guest guest]

beth:

(sorry I misspelled your name earlier )

I am glad that you are doing better with the MTX. I didn't know that

Plaquenil intensified the effects, that is a good thing to know. Thanks

for telling me about that. My rheumatologist told me that it is ok to

split the mtx dose as long as you get it all in within 24 hours. However,

I'm with you, at 7.5 mg, that is about the size of a half dose anyway.

Look for them to slowly increase that amount until you get control of

your symptoms.

For Rob, it took about 2 months to start seeing a difference. For me, I

started seeing a difference in about 6 weeks. This summer I went off my

MTX (another long story) and I was off about 3 months before I had a

nasty flare again and had to go back on.

I feel for you having to deal with Iga and still's. They originally

thought Rob had IgA, because it is linked to ankylosing spondylitis, but

it turned out to be Alport syndrome.

Rob is doing well right now. His Cozaar appears to be controlling his

hematuria and proteinuria. Enbrel had made a significant difference in

his joint pain. He goes back to the rheumatologist in June. His hips and

knees still bother him quite a bit, but he is significantly better than

he was this time last year, that is for sure. So we are pleased and

thankful for that.

Best wishes to you too! I am so glad that you are on this board.

Take care, and do keep me posted on how it is going with the meds.

, mom to Rob, 15

On Sat, 5 Feb 2005 08:57:12 -0500 " beth "

writes:

Dear ,

Thank you for sharing your experience with MTX. Today is my second time

and it's going alot better- don't have such a problem! I'm also on Folic

Acid daily.

One thing I will do though is not take Plaquenil tonight- that's the

other one that I'm on. Plaquenil intensifies the effects of the

Methotrexate, and it was hard to get to sleep a week ago.

I'm on such a small dose of MTX (7.5 mg), that it's not a problem to take

it all at once, but thank you for your suggestion. If they up my dose,

I'll definitely split it in half over 2 days.

How long did it take for the MTX to start working for you?

Best wishes to you and Rob,

-beth