Re: HSP/IgA newcomer, 27 y/o

[Guest guest]

Neoral is cyclosporine, for those who may not know. It's an immune

suppressant drug, and a mainstay in preventing the rejection of kidney

transplants (even though it can itself be toxic to the kidneys). I'm not

sure about HSP, but it may not be for life in that case.

Pierre

HSP/IgA newcomer, 27 y/o

> Hi, I was diagnosed as HSP which is similar to IgA, 3 years ago, and

> am on my 3rd year of Prednisone and 2nd year of Neoral. When I

> relapse I get joint pains, abdominal pains and leaky kidneys

> (proteinuria & hematuria). I started out on 150mg/day of Neoral and

> 30mg/day of Pred, but have managed to gradually reduce the dose to

> 75mg/day Neoral and 5mg/day Pred. I think turning my vegan and eating

> mostly raw foods has helped in reducing dependence on the drugs. I

> have heard that once you're on Neoral, it's for life, but remain

> optimistic about weaning off it in the future. I wonder if anyone has

> similar experiences, or any comments on this?

>

>

>

>

>

[Guest guest]

Hello Grace,

Interested to hear you have HSP, were you diagnosed with that because you

have systemic symptoms?

I would be interested to know what your non kidney symptoms are, if you

wanted to tell us.

Sally

HSP/IgA newcomer, 27 y/o

Hi, I was diagnosed as HSP which is similar to IgA, 3 years ago, and

am on my 3rd year of Prednisone and 2nd year of Neoral. When I

relapse I get joint pains, abdominal pains and leaky kidneys

(proteinuria & hematuria). I started out on 150mg/day of Neoral and

30mg/day of Pred, but have managed to gradually reduce the dose to

75mg/day Neoral and 5mg/day Pred. I think turning my vegan and eating

mostly raw foods has helped in reducing dependence on the drugs. I

have heard that once you're on Neoral, it's for life, but remain

optimistic about weaning off it in the future. I wonder if anyone has

similar experiences, or any comments on this?

[Guest guest]

Hi,

I presented with edema and proteinuria, and soon after a kidney

biopsy my neph told me I had IgAN or HSP. I am kept in remission by

taking medication, but when I relapse I exhibit all the symptoms of

HSP: joint pain or swelling, purpuric lesions on my feet and ankles,

severe abdominal pain akin to colic, and proteinuria with hematuria.

I read somewhere that my prognosis isn't good because I presented

with all the symptoms - apparently 50% of such cases need dialysis

within 10 years, and this is my 3rd year... Still it's impossible to

be pessimistic because my kidney and liver function tests,

haematocrit counts, etc are all so nice. Except during relapses of

course, but that's another matter.

I am something of a case study for my neph, as I am a raw vegan on a

salt, sugar and oil-free diet. I adopted this diet after being

diagnosed, as I felt better. She has noted some things about me that

differ from others, and I think that's part of the reason why she has

stopped fussing overmuch if my potassium slightly exceeds the normal

level, or if levels of other things deviate slightly from the normal.

I have also observed things about myself that are different from

other patients, in particular the side effects of medications, which

don't seem to plague me as much. Maybe it's too early to tell though,

as I've only been on them for a few years. She thinks I am doing

well, and has left the rate of tapering the Neoral dose to my

discretion, also adjusting my medication dosage higher if need be, if

I relapse. So far so good...

> Hello Grace,

> Interested to hear you have HSP, were you diagnosed with that

because you

> have systemic symptoms?

> I would be interested to know what your non kidney symptoms are, if

you

> wanted to tell us.

> Sally

> HSP/IgA newcomer, 27 y/o

>

>

> Hi, I was diagnosed as HSP which is similar to IgA, 3 years ago,

and

> am on my 3rd year of Prednisone and 2nd year of Neoral. When I

> relapse I get joint pains, abdominal pains and leaky kidneys

> (proteinuria & hematuria). I started out on 150mg/day of Neoral

and

> 30mg/day of Pred, but have managed to gradually reduce the dose to

> 75mg/day Neoral and 5mg/day Pred. I think turning my vegan and

eating

> mostly raw foods has helped in reducing dependence on the drugs. I

> have heard that once you're on Neoral, it's for life, but remain

> optimistic about weaning off it in the future. I wonder if anyone

has

> similar experiences, or any comments on this?

>

>

>

>

[Guest guest]

Welcome to the group Grace. I am another one who has been diagnosed with

both IgAN and HSP. I also get the systemic symptoms with severe abdominal

pain and joint pains, but, interestingly enough, I don't get the purple rash.

Never have had that for some reason. As an attempt to encourage you, I have

had this since I was a teenager, and I am now 42 and still going strong. As

I have said to many in this group, live life to the fullest and don't let

your diagnosis dictate your life!

[Guest guest]

Grace,

I feel so bad that you are in a " flare up " as I call it. I know that is

perfectly miserable! I tell my husband when I have a flare up that

everything except my hair hurts. I also have trouble with edema and my

protein rising during these episodes, and I know that extra water retention

is awful to carry around.

I hope you bounce back very quickly, but in the mean time I will all you to

my prayer list too! This group keeps me busy :-)

[Guest guest]

,

You have no idea how much your words uplifted me. I'm actually in the middle

of a relapse right now, waiting for the medication to kick in and bring me

back into remission. I spent 2 weeks this month vomiting and purging and

couldn't hold down my Neoral very well, so it left me weak and sicker.

Actually being unable to go anywhere and do the outdoorsy stuff I usually

do, put me in front of the computer and I found you guys.

I am at the moment severely nephrotic, and have to sleep with my feet and

chest elevated. My usual weight is 45kg, but now I am 55kg so carrying

around that extra water is tiring, plus I have to watch my fluid intake and

blood pressure, which was 105/73 today (normal for me). I also have a little

pleural effusion (fluid leaking into my pleural cavity) so am feeling a bit

breathless, but it's not as bad as my worst relapse back in 2000 when I had

150 mls syringed out from each pleural cavity. I think the medication will

work by next week - I have a followup medical then. It is always a great

relief to see my proteinuria go down from 4+ to neg in a few days, once the

meds kick in, and once the proteinuria stops, my serum albumin levels go

back up, and I can see my palms turn pink again, and once my serum albumin

levels increase to the point where the osmotic pressure in the cells is

higher (or something like that, i forget), then the edema dissipates by

itself - I piss like crazy and get all nice and skinny and light again.

So I'm biding my time and planning for all the rock climbing and trekking

that begs doing once I get well...

grace

----Original Message Follows----

From: W4JC@...

Reply-To: iga-nephropathy

To: iga-nephropathy

Subject: Re: HSP/IgA newcomer, 27 y/o

Date: Mon, 26 Aug 2002 11:59:33 EDT

Welcome to the group Grace. I am another one who has been diagnosed with

both IgAN and HSP. I also get the systemic symptoms with severe abdominal

pain and joint pains, but, interestingly enough, I don't get the purple

rash.

Never have had that for some reason. As an attempt to encourage you, I

have

had this since I was a teenager, and I am now 42 and still going strong. As

I have said to many in this group, live life to the fullest and don't let

your diagnosis dictate your life!

[Guest guest]

Best wishes for an early rock climbing trip then. Sounds tough, but I hear

alot of strength in your words. I am sure you'll be fine.

Take care

Re: HSP/IgA newcomer, 27 y/o

> Date: Mon, 26 Aug 2002 11:59:33 EDT

>

> Welcome to the group Grace. I am another one who has been diagnosed with

> both IgAN and HSP. I also get the systemic symptoms with severe abdominal

> pain and joint pains, but, interestingly enough, I don't get the purple

> rash.

> Never have had that for some reason. As an attempt to encourage you, I

> have

> had this since I was a teenager, and I am now 42 and still going strong.

As

> I have said to many in this group, live life to the fullest and don't let

> your diagnosis dictate your life!

>

>

>

>

>

[Guest guest]

,

Thanks.

grace

----Original Message Follows----

Reply-To: iga-nephropathy

To: <iga-nephropathy >

Subject: Re: HSP/IgA newcomer, 27 y/o

Date: Tue, 27 Aug 2002 11:02:07 +0900

Best wishes for an early rock climbing trip then. Sounds tough, but I hear

alot of strength in your words. I am sure you'll be fine.

Take care

Re: HSP/IgA newcomer, 27 y/o

> Date: Mon, 26 Aug 2002 11:59:33 EDT

>

> Welcome to the group Grace. I am another one who has been diagnosed with

> both IgAN and HSP. I also get the systemic symptoms with severe

abdominal

> pain and joint pains, but, interestingly enough, I don't get the purple

> rash.

> Never have had that for some reason. As an attempt to encourage you, I

> have

> had this since I was a teenager, and I am now 42 and still going strong.

As

> I have said to many in this group, live life to the fullest and don't let

> your diagnosis dictate your life!

>

>

>

>

>

[Guest guest]

,

Thanks!

grace

----Original Message Follows----

From: W4JC@...

Reply-To: iga-nephropathy

To: iga-nephropathy

Subject: Re: HSP/IgA newcomer, 27 y/o

Date: Tue, 27 Aug 2002 00:45:27 EDT

Grace,

I feel so bad that you are in a " flare up " as I call it. I know that is

perfectly miserable! I tell my husband when I have a flare up that

everything except my hair hurts. I also have trouble with edema and my

protein rising during these episodes, and I know that extra water retention

is awful to carry around.

I hope you bounce back very quickly, but in the mean time I will all you to

my prayer list too! This group keeps me busy :-)