Re: Adults with Henoch Schonlein Purpura(HSP)?

[Guest guest]

Hi, and welcome to the IgAN group! I am sorry you have been diagnosed with

probable HSP/IgAN.

I am an adult that has also been diagnosed with IgAN and HSP. For me, the

IgAN diagnosis came first, and the HSP came later. I had protein and

microscopic hematuria in my teens, hence the IgAN diagnosis before HSP. I had

IgAN

symptoms a good ten years before HSP symptoms came along with the occasional

abdominal pain, pancreatitis, occasional painful joints, but interestingly, I

escaped the rash part except for twice in last 15 years. Both times, my dark

rash

was gone within a month or so, but it was raised when I had it.

As far as treatment, ACE inhibitors are pretty standard due to both the renal

protective measure and lowering protein as well.

For the first probably 15 years or so, I was just monitored once or twice a

year, and that is it. I really had been pretty stable up until about 2000, at

which time I began my decline. I am still not on dialysis yet, but my

creatinine clearance is getting pretty far down there.

Welcome again,

In a message dated 3/8/2004 8:01:57 AM Pacific Standard Time,

tettnanger7@... writes:

> Hi all. I just recently posted this same question on the IgAN Cafe so

> apologies if you've already seen it. I was told that there were some

> people with HSP on the newsgroups so I decided to ask here as well.

>

> I'm curious how many adults out there have been diagnosed with HSP?

> From everything I've read it's pretty darn rare for adults to get it,

> but that if you do, the prognosis (long term at least) is not good

> (unlike kids where it goes away). I'm a 32 year old male and have not

> been officially diagnosed with anything yet, but the various doctors

> I've seen all say " it's very possible " that I have HSP and/or IgAN. I

> guess I'd be surprised if I didn't since I seem to have many of the

> HSP symptoms (recurring purpuric rash, abdominal pain, persistent mild

> hematuria, occasional mild proteinuria, occasional arthritic pain,

> etc). For those adults that have it, I'm wondeirng:

>

> * Does the purpura ever go away? So far, for the last 3 months, mine

> starts to fade but it comes back again before it completely goes away.

>

> * Do you have " palpable purpura " as its called? Mine are all of the

> small petichiae variety, mainly below the knees, and are almost never

> palpable (raised).

>

> * Did you have kidney, hematuria, or proteinuria issues prior to the

> appearance of the purpura? I got the rash first and found the rest in

> the subsequent urinalysis.

>

> I'm curious in comparing notes since the medical community does not

> seem to know a whole lot in general regarding HSP in adults. I'm sure

> lots of you have been there but it is very, very frustrating to

> possibly have a chronic disease and NOT have a definitive answer as to

> what is going on. I've seen a nephrologist once and so far he came

> back with the same " you could have HSP or IgAN " answer and said that I

> could come back and see him in 4-6 weeks which I plan on doing. My

> family doctor tells me nothing more than " you should probably have

> your urine checked once every 6 months or once a year " . My thought was

> are you crazy? I know that patience is definitely NOT one of my

> virtues but it would seem to me that it would make

> sense to be as proactive as possible in heading this thing off. Being

> that HSP and IgAN aren't curable I know there aren't any easy answers,

> but the doctors don't seem to have a plan of action other than to wait

> and see what happens. I seem to be doing all the research. I bring up

> trying prednisone just to see if it causes the rash to go away. The

> doctor's say " sure, let's give it a try " . I bring up using fish oil,

> and they say " sure, couldn't hurt, go to GNC and buy some. " Next time

> I see the doctor I'm going to ask whether it could hurt to try a

> low-allergen, low-gluten diet for a month or so to see if the rash

> goes away. I'm fully confident he'll say " sure, why not " !!!!!!

[Guest guest]

Hi, and welcome to the IgAN group! I am sorry you have been diagnosed with

probable HSP/IgAN.

I am an adult that has also been diagnosed with IgAN and HSP. For me, the

IgAN diagnosis came first, and the HSP came later. I had protein and

microscopic hematuria in my teens, hence the IgAN diagnosis before HSP. I had

IgAN

symptoms a good ten years before HSP symptoms came along with the occasional

abdominal pain, pancreatitis, occasional painful joints, but interestingly, I

escaped the rash part except for twice in last 15 years. Both times, my dark

rash

was gone within a month or so, but it was raised when I had it.

As far as treatment, ACE inhibitors are pretty standard due to both the renal

protective measure and lowering protein as well.

For the first probably 15 years or so, I was just monitored once or twice a

year, and that is it. I really had been pretty stable up until about 2000, at

which time I began my decline. I am still not on dialysis yet, but my

creatinine clearance is getting pretty far down there.

Welcome again,

In a message dated 3/8/2004 8:01:57 AM Pacific Standard Time,

tettnanger7@... writes:

> Hi all. I just recently posted this same question on the IgAN Cafe so

> apologies if you've already seen it. I was told that there were some

> people with HSP on the newsgroups so I decided to ask here as well.

>

> I'm curious how many adults out there have been diagnosed with HSP?

> From everything I've read it's pretty darn rare for adults to get it,

> but that if you do, the prognosis (long term at least) is not good

> (unlike kids where it goes away). I'm a 32 year old male and have not

> been officially diagnosed with anything yet, but the various doctors

> I've seen all say " it's very possible " that I have HSP and/or IgAN. I

> guess I'd be surprised if I didn't since I seem to have many of the

> HSP symptoms (recurring purpuric rash, abdominal pain, persistent mild

> hematuria, occasional mild proteinuria, occasional arthritic pain,

> etc). For those adults that have it, I'm wondeirng:

>

> * Does the purpura ever go away? So far, for the last 3 months, mine

> starts to fade but it comes back again before it completely goes away.

>

> * Do you have " palpable purpura " as its called? Mine are all of the

> small petichiae variety, mainly below the knees, and are almost never

> palpable (raised).

>

> * Did you have kidney, hematuria, or proteinuria issues prior to the

> appearance of the purpura? I got the rash first and found the rest in

> the subsequent urinalysis.

>

> I'm curious in comparing notes since the medical community does not

> seem to know a whole lot in general regarding HSP in adults. I'm sure

> lots of you have been there but it is very, very frustrating to

> possibly have a chronic disease and NOT have a definitive answer as to

> what is going on. I've seen a nephrologist once and so far he came

> back with the same " you could have HSP or IgAN " answer and said that I

> could come back and see him in 4-6 weeks which I plan on doing. My

> family doctor tells me nothing more than " you should probably have

> your urine checked once every 6 months or once a year " . My thought was

> are you crazy? I know that patience is definitely NOT one of my

> virtues but it would seem to me that it would make

> sense to be as proactive as possible in heading this thing off. Being

> that HSP and IgAN aren't curable I know there aren't any easy answers,

> but the doctors don't seem to have a plan of action other than to wait

> and see what happens. I seem to be doing all the research. I bring up

> trying prednisone just to see if it causes the rash to go away. The

> doctor's say " sure, let's give it a try " . I bring up using fish oil,

> and they say " sure, couldn't hurt, go to GNC and buy some. " Next time

> I see the doctor I'm going to ask whether it could hurt to try a

> low-allergen, low-gluten diet for a month or so to see if the rash

> goes away. I'm fully confident he'll say " sure, why not " !!!!!!

[Guest guest]

Hi, and welcome to the IgAN group! I am sorry you have been diagnosed with

probable HSP/IgAN.

I am an adult that has also been diagnosed with IgAN and HSP. For me, the

IgAN diagnosis came first, and the HSP came later. I had protein and

microscopic hematuria in my teens, hence the IgAN diagnosis before HSP. I had

IgAN

symptoms a good ten years before HSP symptoms came along with the occasional

abdominal pain, pancreatitis, occasional painful joints, but interestingly, I

escaped the rash part except for twice in last 15 years. Both times, my dark

rash

was gone within a month or so, but it was raised when I had it.

As far as treatment, ACE inhibitors are pretty standard due to both the renal

protective measure and lowering protein as well.

For the first probably 15 years or so, I was just monitored once or twice a

year, and that is it. I really had been pretty stable up until about 2000, at

which time I began my decline. I am still not on dialysis yet, but my

creatinine clearance is getting pretty far down there.

Welcome again,

In a message dated 3/8/2004 8:01:57 AM Pacific Standard Time,

tettnanger7@... writes:

> Hi all. I just recently posted this same question on the IgAN Cafe so

> apologies if you've already seen it. I was told that there were some

> people with HSP on the newsgroups so I decided to ask here as well.

>

> I'm curious how many adults out there have been diagnosed with HSP?

> From everything I've read it's pretty darn rare for adults to get it,

> but that if you do, the prognosis (long term at least) is not good

> (unlike kids where it goes away). I'm a 32 year old male and have not

> been officially diagnosed with anything yet, but the various doctors

> I've seen all say " it's very possible " that I have HSP and/or IgAN. I

> guess I'd be surprised if I didn't since I seem to have many of the

> HSP symptoms (recurring purpuric rash, abdominal pain, persistent mild

> hematuria, occasional mild proteinuria, occasional arthritic pain,

> etc). For those adults that have it, I'm wondeirng:

>

> * Does the purpura ever go away? So far, for the last 3 months, mine

> starts to fade but it comes back again before it completely goes away.

>

> * Do you have " palpable purpura " as its called? Mine are all of the

> small petichiae variety, mainly below the knees, and are almost never

> palpable (raised).

>

> * Did you have kidney, hematuria, or proteinuria issues prior to the

> appearance of the purpura? I got the rash first and found the rest in

> the subsequent urinalysis.

>

> I'm curious in comparing notes since the medical community does not

> seem to know a whole lot in general regarding HSP in adults. I'm sure

> lots of you have been there but it is very, very frustrating to

> possibly have a chronic disease and NOT have a definitive answer as to

> what is going on. I've seen a nephrologist once and so far he came

> back with the same " you could have HSP or IgAN " answer and said that I

> could come back and see him in 4-6 weeks which I plan on doing. My

> family doctor tells me nothing more than " you should probably have

> your urine checked once every 6 months or once a year " . My thought was

> are you crazy? I know that patience is definitely NOT one of my

> virtues but it would seem to me that it would make

> sense to be as proactive as possible in heading this thing off. Being

> that HSP and IgAN aren't curable I know there aren't any easy answers,

> but the doctors don't seem to have a plan of action other than to wait

> and see what happens. I seem to be doing all the research. I bring up

> trying prednisone just to see if it causes the rash to go away. The

> doctor's say " sure, let's give it a try " . I bring up using fish oil,

> and they say " sure, couldn't hurt, go to GNC and buy some. " Next time

> I see the doctor I'm going to ask whether it could hurt to try a

> low-allergen, low-gluten diet for a month or so to see if the rash

> goes away. I'm fully confident he'll say " sure, why not " !!!!!!

[Guest guest]

Jack,

I am a member of this group and occasionally read some of the groups

emails - usually the ones with an eye catching headline.

I am like yourself, had a big rash/ burn below the knee down the to the heel

of my foot after feeling very ill (flu/virus symptoms). I also had very dark

blood in my urine. This obviously was a concern and after spending a month

in hospital the Strep/ HSP managed to disappear after a long course of

Antibiotics (drip fed). To this day I am confused, I have high blood

pressure - usually ok some weeks other times in the 140/95BP. My only

thoughts as to how these " attacks " happen is either hygiene - playing a lot

of rugby and getting Athletes Foot which I had noticed on both occasions,

cuts to the leg - normal rugby injury or insect bites - Flies (Not that I

knew they bite) Mosquitoes.

I have been clear of these attacks for over 2 years and back to playing

Rugby. However, still taking BP tablets and have the occasional Arthritic

pain in my ankle which requires a walking stick.

I look forward to retiring soon!!!!

Regards

Ian aged 30 and living with one eye open in London!

Adults with Henoch Schonlein Purpura(HSP)?

> Hi all. I just recently posted this same question on the IgAN Cafe so

> apologies if you've already seen it. I was told that there were some

> people with HSP on the newsgroups so I decided to ask here as well.

>

> I'm curious how many adults out there have been diagnosed with HSP?

> From everything I've read it's pretty darn rare for adults to get it,

> but that if you do, the prognosis (long term at least) is not good

> (unlike kids where it goes away). I'm a 32 year old male and have not

> been officially diagnosed with anything yet, but the various doctors

> I've seen all say " it's very possible " that I have HSP and/or IgAN. I

> guess I'd be surprised if I didn't since I seem to have many of the

> HSP symptoms (recurring purpuric rash, abdominal pain, persistent mild

> hematuria, occasional mild proteinuria, occasional arthritic pain,

> etc). For those adults that have it, I'm wondeirng:

>

> * Does the purpura ever go away? So far, for the last 3 months, mine

> starts to fade but it comes back again before it completely goes away.

>

> * Do you have " palpable purpura " as its called? Mine are all of the

> small petichiae variety, mainly below the knees, and are almost never

> palpable (raised).

>

> * Did you have kidney, hematuria, or proteinuria issues prior to the

> appearance of the purpura? I got the rash first and found the rest in

> the subsequent urinalysis.

>

> I'm curious in comparing notes since the medical community does not

> seem to know a whole lot in general regarding HSP in adults. I'm sure

> lots of you have been there but it is very, very frustrating to

> possibly have a chronic disease and NOT have a definitive answer as to

> what is going on. I've seen a nephrologist once and so far he came

> back with the same " you could have HSP or IgAN " answer and said that I

> could come back and see him in 4-6 weeks which I plan on doing. My

> family doctor tells me nothing more than " you should probably have

> your urine checked once every 6 months or once a year " . My thought was

> are you crazy? I know that patience is definitely NOT one of my

> virtues but it would seem to me that it would make

> sense to be as proactive as possible in heading this thing off. Being

> that HSP and IgAN aren't curable I know there aren't any easy answers,

> but the doctors don't seem to have a plan of action other than to wait

> and see what happens. I seem to be doing all the research. I bring up

> trying prednisone just to see if it causes the rash to go away. The

> doctor's say " sure, let's give it a try " . I bring up using fish oil,

> and they say " sure, couldn't hurt, go to GNC and buy some. " Next time

> I see the doctor I'm going to ask whether it could hurt to try a

> low-allergen, low-gluten diet for a month or so to see if the rash

> goes away. I'm fully confident he'll say " sure, why not " !!!!!!

>

>

>

>

> 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]

Jack,

I am a member of this group and occasionally read some of the groups

emails - usually the ones with an eye catching headline.

I am like yourself, had a big rash/ burn below the knee down the to the heel

of my foot after feeling very ill (flu/virus symptoms). I also had very dark

blood in my urine. This obviously was a concern and after spending a month

in hospital the Strep/ HSP managed to disappear after a long course of

Antibiotics (drip fed). To this day I am confused, I have high blood

pressure - usually ok some weeks other times in the 140/95BP. My only

thoughts as to how these " attacks " happen is either hygiene - playing a lot

of rugby and getting Athletes Foot which I had noticed on both occasions,

cuts to the leg - normal rugby injury or insect bites - Flies (Not that I

knew they bite) Mosquitoes.

I have been clear of these attacks for over 2 years and back to playing

Rugby. However, still taking BP tablets and have the occasional Arthritic

pain in my ankle which requires a walking stick.

I look forward to retiring soon!!!!

Regards

Ian aged 30 and living with one eye open in London!

Adults with Henoch Schonlein Purpura(HSP)?

> Hi all. I just recently posted this same question on the IgAN Cafe so

> apologies if you've already seen it. I was told that there were some

> people with HSP on the newsgroups so I decided to ask here as well.

>

> I'm curious how many adults out there have been diagnosed with HSP?

> From everything I've read it's pretty darn rare for adults to get it,

> but that if you do, the prognosis (long term at least) is not good

> (unlike kids where it goes away). I'm a 32 year old male and have not

> been officially diagnosed with anything yet, but the various doctors

> I've seen all say " it's very possible " that I have HSP and/or IgAN. I

> guess I'd be surprised if I didn't since I seem to have many of the

> HSP symptoms (recurring purpuric rash, abdominal pain, persistent mild

> hematuria, occasional mild proteinuria, occasional arthritic pain,

> etc). For those adults that have it, I'm wondeirng:

>

> * Does the purpura ever go away? So far, for the last 3 months, mine

> starts to fade but it comes back again before it completely goes away.

>

> * Do you have " palpable purpura " as its called? Mine are all of the

> small petichiae variety, mainly below the knees, and are almost never

> palpable (raised).

>

> * Did you have kidney, hematuria, or proteinuria issues prior to the

> appearance of the purpura? I got the rash first and found the rest in

> the subsequent urinalysis.

>

> I'm curious in comparing notes since the medical community does not

> seem to know a whole lot in general regarding HSP in adults. I'm sure

> lots of you have been there but it is very, very frustrating to

> possibly have a chronic disease and NOT have a definitive answer as to

> what is going on. I've seen a nephrologist once and so far he came

> back with the same " you could have HSP or IgAN " answer and said that I

> could come back and see him in 4-6 weeks which I plan on doing. My

> family doctor tells me nothing more than " you should probably have

> your urine checked once every 6 months or once a year " . My thought was

> are you crazy? I know that patience is definitely NOT one of my

> virtues but it would seem to me that it would make

> sense to be as proactive as possible in heading this thing off. Being

> that HSP and IgAN aren't curable I know there aren't any easy answers,

> but the doctors don't seem to have a plan of action other than to wait

> and see what happens. I seem to be doing all the research. I bring up

> trying prednisone just to see if it causes the rash to go away. The

> doctor's say " sure, let's give it a try " . I bring up using fish oil,

> and they say " sure, couldn't hurt, go to GNC and buy some. " Next time

> I see the doctor I'm going to ask whether it could hurt to try a

> low-allergen, low-gluten diet for a month or so to see if the rash

> goes away. I'm fully confident he'll say " sure, why not " !!!!!!

>

>

>

>

> 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]

Jack,

I am a member of this group and occasionally read some of the groups

emails - usually the ones with an eye catching headline.

I am like yourself, had a big rash/ burn below the knee down the to the heel

of my foot after feeling very ill (flu/virus symptoms). I also had very dark

blood in my urine. This obviously was a concern and after spending a month

in hospital the Strep/ HSP managed to disappear after a long course of

Antibiotics (drip fed). To this day I am confused, I have high blood

pressure - usually ok some weeks other times in the 140/95BP. My only

thoughts as to how these " attacks " happen is either hygiene - playing a lot

of rugby and getting Athletes Foot which I had noticed on both occasions,

cuts to the leg - normal rugby injury or insect bites - Flies (Not that I

knew they bite) Mosquitoes.

I have been clear of these attacks for over 2 years and back to playing

Rugby. However, still taking BP tablets and have the occasional Arthritic

pain in my ankle which requires a walking stick.

I look forward to retiring soon!!!!

Regards

Ian aged 30 and living with one eye open in London!

Adults with Henoch Schonlein Purpura(HSP)?

> Hi all. I just recently posted this same question on the IgAN Cafe so

> apologies if you've already seen it. I was told that there were some

> people with HSP on the newsgroups so I decided to ask here as well.

>

> I'm curious how many adults out there have been diagnosed with HSP?

> From everything I've read it's pretty darn rare for adults to get it,

> but that if you do, the prognosis (long term at least) is not good

> (unlike kids where it goes away). I'm a 32 year old male and have not

> been officially diagnosed with anything yet, but the various doctors

> I've seen all say " it's very possible " that I have HSP and/or IgAN. I

> guess I'd be surprised if I didn't since I seem to have many of the

> HSP symptoms (recurring purpuric rash, abdominal pain, persistent mild

> hematuria, occasional mild proteinuria, occasional arthritic pain,

> etc). For those adults that have it, I'm wondeirng:

>

> * Does the purpura ever go away? So far, for the last 3 months, mine

> starts to fade but it comes back again before it completely goes away.

>

> * Do you have " palpable purpura " as its called? Mine are all of the

> small petichiae variety, mainly below the knees, and are almost never

> palpable (raised).

>

> * Did you have kidney, hematuria, or proteinuria issues prior to the

> appearance of the purpura? I got the rash first and found the rest in

> the subsequent urinalysis.

>

> I'm curious in comparing notes since the medical community does not

> seem to know a whole lot in general regarding HSP in adults. I'm sure

> lots of you have been there but it is very, very frustrating to

> possibly have a chronic disease and NOT have a definitive answer as to

> what is going on. I've seen a nephrologist once and so far he came

> back with the same " you could have HSP or IgAN " answer and said that I

> could come back and see him in 4-6 weeks which I plan on doing. My

> family doctor tells me nothing more than " you should probably have

> your urine checked once every 6 months or once a year " . My thought was

> are you crazy? I know that patience is definitely NOT one of my

> virtues but it would seem to me that it would make

> sense to be as proactive as possible in heading this thing off. Being

> that HSP and IgAN aren't curable I know there aren't any easy answers,

> but the doctors don't seem to have a plan of action other than to wait

> and see what happens. I seem to be doing all the research. I bring up

> trying prednisone just to see if it causes the rash to go away. The

> doctor's say " sure, let's give it a try " . I bring up using fish oil,

> and they say " sure, couldn't hurt, go to GNC and buy some. " Next time

> I see the doctor I'm going to ask whether it could hurt to try a

> low-allergen, low-gluten diet for a month or so to see if the rash

> goes away. I'm fully confident he'll say " sure, why not " !!!!!!

>

>

>

>

> 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]

Ian,

Thanks for the response. I too am at a loss as to what exactly the

triggering event was and is for me. I did not feel ill and did not

have any sort of upper resp infection beforehand. In fact, I was off

work for about 2 weeks for Xmas break and was about as stress free as

I could get (although I initially did wonder if excess

drinking/partying had anything to do with it!)

The athletic angle is interesting. I came home one evening after

playing 2+ hours of very competitive wallyball in a league. Usually I

only play an hour but we had a double-header. As I was getting ready

for bed I first noticed the rash. Exercise may have triggered it the

first time but now it just seems to leave and come back every 4-5

days. It is nowhere near as intense as it was the very first time but

it persists. Hmm, I also get athlete's foot on occasion. I wonder if

there's a link. So far I haven't had high blood pressure and my

hematuria was microscopic.

Everything I've read about HSP (and IgAN for that matter) says the

course it takes is highly variable. I guess everyone is different.

Did the docs ever officially diagnose you with HSP? Did they ever

biopsy the kidney and/or skin for IgA deposits, etc? What about

abdominal pain? I have that more often than arthritic pains.

thanks...

> Jack,

> I am a member of this group and occasionally read some of the groups

> emails - usually the ones with an eye catching headline.

> I am like yourself, had a big rash/ burn below the knee down the to

the heel

> of my foot after feeling very ill (flu/virus symptoms). I also had

very dark

> blood in my urine. This obviously was a concern and after spending a

month

> in hospital the Strep/ HSP managed to disappear after a long course

of

> Antibiotics (drip fed). To this day I am confused, I have high blood

> pressure - usually ok some weeks other times in the 140/95BP. My

only

> thoughts as to how these " attacks " happen is either hygiene -

playing a lot

> of rugby and getting Athletes Foot which I had noticed on both

occasions,

> cuts to the leg - normal rugby injury or insect bites - Flies (Not

that I

> knew they bite) Mosquitoes.

> I have been clear of these attacks for over 2 years and back to

playing

> Rugby. However, still taking BP tablets and have the occasional

Arthritic

> pain in my ankle which requires a walking stick.

> I look forward to retiring soon!!!!

>

> Regards

> Ian aged 30 and living with one eye open in London!

>

>

> Adults with Henoch Schonlein Purpura(HSP)?

>

>

> > Hi all. I just recently posted this same question on the IgAN

Cafe so

> > apologies if you've already seen it. I was told that there were

some

> > people with HSP on the newsgroups so I decided to ask here as

well.

> >

> > I'm curious how many adults out there have been diagnosed with

HSP?

> > From everything I've read it's pretty darn rare for adults to get

it,

> > but that if you do, the prognosis (long term at least) is not good

> > (unlike kids where it goes away). I'm a 32 year old male and have

not

> > been officially diagnosed with anything yet, but the various

doctors

> > I've seen all say " it's very possible " that I have HSP and/or

IgAN. I

> > guess I'd be surprised if I didn't since I seem to have many of

the

> > HSP symptoms (recurring purpuric rash, abdominal pain, persistent

mild

> > hematuria, occasional mild proteinuria, occasional arthritic pain,

> > etc). For those adults that have it, I'm wondeirng:

> >

> > * Does the purpura ever go away? So far, for the last 3 months,

mine

> > starts to fade but it comes back again before it completely goes

away.

> >

> > * Do you have " palpable purpura " as its called? Mine are all of

the

> > small petichiae variety, mainly below the knees, and are almost

never

> > palpable (raised).

> >

> > * Did you have kidney, hematuria, or proteinuria issues prior to

the

> > appearance of the purpura? I got the rash first and found the

rest in

> > the subsequent urinalysis.

> >

> > I'm curious in comparing notes since the medical community does

not

> > seem to know a whole lot in general regarding HSP in adults. I'm

sure

> > lots of you have been there but it is very, very frustrating to

> > possibly have a chronic disease and NOT have a definitive answer

as to

> > what is going on. I've seen a nephrologist once and so far he came

> > back with the same " you could have HSP or IgAN " answer and said

that I

> > could come back and see him in 4-6 weeks which I plan on doing. My

> > family doctor tells me nothing more than " you should probably have

> > your urine checked once every 6 months or once a year " . My

thought was

> > are you crazy? I know that patience is definitely NOT one of my

> > virtues but it would seem to me that it would make

> > sense to be as proactive as possible in heading this thing off.

Being

> > that HSP and IgAN aren't curable I know there aren't any easy

answers,

> > but the doctors don't seem to have a plan of action other than to

wait

> > and see what happens. I seem to be doing all the research. I

bring up

> > trying prednisone just to see if it causes the rash to go away.

The

> > doctor's say " sure, let's give it a try " . I bring up using fish

oil,

> > and they say " sure, couldn't hurt, go to GNC and buy some. " Next

time

> > I see the doctor I'm going to ask whether it could hurt to try a

> > low-allergen, low-gluten diet for a month or so to see if the rash

> > goes away. I'm fully confident he'll say " sure, why not " !!!!!!

> >

> >

> >

> >

> > 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]

Ian,

Thanks for the response. I too am at a loss as to what exactly the

triggering event was and is for me. I did not feel ill and did not

have any sort of upper resp infection beforehand. In fact, I was off

work for about 2 weeks for Xmas break and was about as stress free as

I could get (although I initially did wonder if excess

drinking/partying had anything to do with it!)

The athletic angle is interesting. I came home one evening after

playing 2+ hours of very competitive wallyball in a league. Usually I

only play an hour but we had a double-header. As I was getting ready

for bed I first noticed the rash. Exercise may have triggered it the

first time but now it just seems to leave and come back every 4-5

days. It is nowhere near as intense as it was the very first time but

it persists. Hmm, I also get athlete's foot on occasion. I wonder if

there's a link. So far I haven't had high blood pressure and my

hematuria was microscopic.

Everything I've read about HSP (and IgAN for that matter) says the

course it takes is highly variable. I guess everyone is different.

Did the docs ever officially diagnose you with HSP? Did they ever

biopsy the kidney and/or skin for IgA deposits, etc? What about

abdominal pain? I have that more often than arthritic pains.

thanks...

> Jack,

> I am a member of this group and occasionally read some of the groups

> emails - usually the ones with an eye catching headline.

> I am like yourself, had a big rash/ burn below the knee down the to

the heel

> of my foot after feeling very ill (flu/virus symptoms). I also had

very dark

> blood in my urine. This obviously was a concern and after spending a

month

> in hospital the Strep/ HSP managed to disappear after a long course

of

> Antibiotics (drip fed). To this day I am confused, I have high blood

> pressure - usually ok some weeks other times in the 140/95BP. My

only

> thoughts as to how these " attacks " happen is either hygiene -

playing a lot

> of rugby and getting Athletes Foot which I had noticed on both

occasions,

> cuts to the leg - normal rugby injury or insect bites - Flies (Not

that I

> knew they bite) Mosquitoes.

> I have been clear of these attacks for over 2 years and back to

playing

> Rugby. However, still taking BP tablets and have the occasional

Arthritic

> pain in my ankle which requires a walking stick.

> I look forward to retiring soon!!!!

>

> Regards

> Ian aged 30 and living with one eye open in London!

>

>

> Adults with Henoch Schonlein Purpura(HSP)?

>

>

> > Hi all. I just recently posted this same question on the IgAN

Cafe so

> > apologies if you've already seen it. I was told that there were

some

> > people with HSP on the newsgroups so I decided to ask here as

well.

> >

> > I'm curious how many adults out there have been diagnosed with

HSP?

> > From everything I've read it's pretty darn rare for adults to get

it,

> > but that if you do, the prognosis (long term at least) is not good

> > (unlike kids where it goes away). I'm a 32 year old male and have

not

> > been officially diagnosed with anything yet, but the various

doctors

> > I've seen all say " it's very possible " that I have HSP and/or

IgAN. I

> > guess I'd be surprised if I didn't since I seem to have many of

the

> > HSP symptoms (recurring purpuric rash, abdominal pain, persistent

mild

> > hematuria, occasional mild proteinuria, occasional arthritic pain,

> > etc). For those adults that have it, I'm wondeirng:

> >

> > * Does the purpura ever go away? So far, for the last 3 months,

mine

> > starts to fade but it comes back again before it completely goes

away.

> >

> > * Do you have " palpable purpura " as its called? Mine are all of

the

> > small petichiae variety, mainly below the knees, and are almost

never

> > palpable (raised).

> >

> > * Did you have kidney, hematuria, or proteinuria issues prior to

the

> > appearance of the purpura? I got the rash first and found the

rest in

> > the subsequent urinalysis.

> >

> > I'm curious in comparing notes since the medical community does

not

> > seem to know a whole lot in general regarding HSP in adults. I'm

sure

> > lots of you have been there but it is very, very frustrating to

> > possibly have a chronic disease and NOT have a definitive answer

as to

> > what is going on. I've seen a nephrologist once and so far he came

> > back with the same " you could have HSP or IgAN " answer and said

that I

> > could come back and see him in 4-6 weeks which I plan on doing. My

> > family doctor tells me nothing more than " you should probably have

> > your urine checked once every 6 months or once a year " . My

thought was

> > are you crazy? I know that patience is definitely NOT one of my

> > virtues but it would seem to me that it would make

> > sense to be as proactive as possible in heading this thing off.

Being

> > that HSP and IgAN aren't curable I know there aren't any easy

answers,

> > but the doctors don't seem to have a plan of action other than to

wait

> > and see what happens. I seem to be doing all the research. I

bring up

> > trying prednisone just to see if it causes the rash to go away.

The

> > doctor's say " sure, let's give it a try " . I bring up using fish

oil,

> > and they say " sure, couldn't hurt, go to GNC and buy some. " Next

time

> > I see the doctor I'm going to ask whether it could hurt to try a

> > low-allergen, low-gluten diet for a month or so to see if the rash

> > goes away. I'm fully confident he'll say " sure, why not " !!!!!!

> >

> >

> >

> >

> > 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]

Ian,

Thanks for the response. I too am at a loss as to what exactly the

triggering event was and is for me. I did not feel ill and did not

have any sort of upper resp infection beforehand. In fact, I was off

work for about 2 weeks for Xmas break and was about as stress free as

I could get (although I initially did wonder if excess

drinking/partying had anything to do with it!)

The athletic angle is interesting. I came home one evening after

playing 2+ hours of very competitive wallyball in a league. Usually I

only play an hour but we had a double-header. As I was getting ready

for bed I first noticed the rash. Exercise may have triggered it the

first time but now it just seems to leave and come back every 4-5

days. It is nowhere near as intense as it was the very first time but

it persists. Hmm, I also get athlete's foot on occasion. I wonder if

there's a link. So far I haven't had high blood pressure and my

hematuria was microscopic.

Everything I've read about HSP (and IgAN for that matter) says the

course it takes is highly variable. I guess everyone is different.

Did the docs ever officially diagnose you with HSP? Did they ever

biopsy the kidney and/or skin for IgA deposits, etc? What about

abdominal pain? I have that more often than arthritic pains.

thanks...

> Jack,

> I am a member of this group and occasionally read some of the groups

> emails - usually the ones with an eye catching headline.

> I am like yourself, had a big rash/ burn below the knee down the to

the heel

> of my foot after feeling very ill (flu/virus symptoms). I also had

very dark

> blood in my urine. This obviously was a concern and after spending a

month

> in hospital the Strep/ HSP managed to disappear after a long course

of

> Antibiotics (drip fed). To this day I am confused, I have high blood

> pressure - usually ok some weeks other times in the 140/95BP. My

only

> thoughts as to how these " attacks " happen is either hygiene -

playing a lot

> of rugby and getting Athletes Foot which I had noticed on both

occasions,

> cuts to the leg - normal rugby injury or insect bites - Flies (Not

that I

> knew they bite) Mosquitoes.

> I have been clear of these attacks for over 2 years and back to

playing

> Rugby. However, still taking BP tablets and have the occasional

Arthritic

> pain in my ankle which requires a walking stick.

> I look forward to retiring soon!!!!

>

> Regards

> Ian aged 30 and living with one eye open in London!

>

>

> Adults with Henoch Schonlein Purpura(HSP)?

>

>

> > Hi all. I just recently posted this same question on the IgAN

Cafe so

> > apologies if you've already seen it. I was told that there were

some

> > people with HSP on the newsgroups so I decided to ask here as

well.

> >

> > I'm curious how many adults out there have been diagnosed with

HSP?

> > From everything I've read it's pretty darn rare for adults to get

it,

> > but that if you do, the prognosis (long term at least) is not good

> > (unlike kids where it goes away). I'm a 32 year old male and have

not

> > been officially diagnosed with anything yet, but the various

doctors

> > I've seen all say " it's very possible " that I have HSP and/or

IgAN. I

> > guess I'd be surprised if I didn't since I seem to have many of

the

> > HSP symptoms (recurring purpuric rash, abdominal pain, persistent

mild

> > hematuria, occasional mild proteinuria, occasional arthritic pain,

> > etc). For those adults that have it, I'm wondeirng:

> >

> > * Does the purpura ever go away? So far, for the last 3 months,

mine

> > starts to fade but it comes back again before it completely goes

away.

> >

> > * Do you have " palpable purpura " as its called? Mine are all of

the

> > small petichiae variety, mainly below the knees, and are almost

never

> > palpable (raised).

> >

> > * Did you have kidney, hematuria, or proteinuria issues prior to

the

> > appearance of the purpura? I got the rash first and found the

rest in

> > the subsequent urinalysis.

> >

> > I'm curious in comparing notes since the medical community does

not

> > seem to know a whole lot in general regarding HSP in adults. I'm

sure

> > lots of you have been there but it is very, very frustrating to

> > possibly have a chronic disease and NOT have a definitive answer

as to

> > what is going on. I've seen a nephrologist once and so far he came

> > back with the same " you could have HSP or IgAN " answer and said

that I

> > could come back and see him in 4-6 weeks which I plan on doing. My

> > family doctor tells me nothing more than " you should probably have

> > your urine checked once every 6 months or once a year " . My

thought was

> > are you crazy? I know that patience is definitely NOT one of my

> > virtues but it would seem to me that it would make

> > sense to be as proactive as possible in heading this thing off.

Being

> > that HSP and IgAN aren't curable I know there aren't any easy

answers,

> > but the doctors don't seem to have a plan of action other than to

wait

> > and see what happens. I seem to be doing all the research. I

bring up

> > trying prednisone just to see if it causes the rash to go away.

The

> > doctor's say " sure, let's give it a try " . I bring up using fish

oil,

> > and they say " sure, couldn't hurt, go to GNC and buy some. " Next

time

> > I see the doctor I'm going to ask whether it could hurt to try a

> > low-allergen, low-gluten diet for a month or so to see if the rash

> > goes away. I'm fully confident he'll say " sure, why not " !!!!!!

> >

> >

> >

> >

> > 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]

I also have HSP with IGA. (39 year old female) Right now I am taking an

ARB. I agree that it would be great to have a doctor who is proactive. When I

was first diagnosed I thought there would be some plan to prevent all the bad

possibilities from happening. I haven't found that to be the case. It is

mostly a wait and see approach.

I don't have the rash so I can't help there. I was at the doctor with my ten

year old yesterday. He had a med student with him. When he was going over

the family history he commented on how rare it was for an adult to have HSP.

He said it was even more rare to have renal involvement. He was explaining it

to the medstudent in enthusiastic detail when he turned to me and aksed if I

had the rash. I am afraid I profoundly disappointed him by not having the

rash. It was a shame he would have liked to show it to the medstudent.

[Guest guest]

I also have HSP with IGA. (39 year old female) Right now I am taking an

ARB. I agree that it would be great to have a doctor who is proactive. When I

was first diagnosed I thought there would be some plan to prevent all the bad

possibilities from happening. I haven't found that to be the case. It is

mostly a wait and see approach.

I don't have the rash so I can't help there. I was at the doctor with my ten

year old yesterday. He had a med student with him. When he was going over

the family history he commented on how rare it was for an adult to have HSP.

He said it was even more rare to have renal involvement. He was explaining it

to the medstudent in enthusiastic detail when he turned to me and aksed if I

had the rash. I am afraid I profoundly disappointed him by not having the

rash. It was a shame he would have liked to show it to the medstudent.

[Guest guest]

I wanted to add to my last post. It is possible to biopsy the skin where the

rash appears for a diagnosis of HSP. I would think that would be much

preferrable to a kidney biopsy.

[Guest guest]

I wanted to add to my last post. It is possible to biopsy the skin where the

rash appears for a diagnosis of HSP. I would think that would be much

preferrable to a kidney biopsy.

[Guest guest]

I wanted to add to my last post. It is possible to biopsy the skin where the

rash appears for a diagnosis of HSP. I would think that would be much

preferrable to a kidney biopsy.

[Guest guest]

Hi , thanks for the reply. So, you've never, ever had the rash?

I thought that was thee distinguishing characteristic of HSP in

everything I read. For it to be HSP I assume you must have some of

the other classic symptoms such as intermittent arthritic pain,

abdominal pain, etc?

As for renal involvement with HSP I'm surprised the doc would say

that. When kids get it they generally recover and do not have renal

involvement, but everything I've read about adults with HSP suggests

that there is eventually renal involvement. To what degree the

kidneys are eventually affected, who knows? Certainly not my doctor!

I'm assuming it is probably highly variable like IgAN.

So, just to compare notes, how long have you been diagnosed with HSP?

With IgAN? Did they diagnose both at the same time? Have things

progressed (creatinine, blood pressure, etc) since diagnosis or have

they stayed roughly the same?

Yeah, I'm going to ask the nephrologist next time I see him if it

would make sense to do a skin biopsy of the rash for IgA deposits.

Again I've read that's not a definitive diagnosis but it increases the

likelihood.

Take care.

BTW-What's an ARB?

> I also have HSP with IGA. (39 year old female) Right now I am

taking an

> ARB. I agree that it would be great to have a doctor who is

proactive. When I

> was first diagnosed I thought there would be some plan to prevent

all the bad

> possibilities from happening. I haven't found that to be the case.

It is

> mostly a wait and see approach.

>

> I don't have the rash so I can't help there. I was at the doctor

with my ten

> year old yesterday. He had a med student with him. When he was

going over

> the family history he commented on how rare it was for an adult to

have HSP.

> He said it was even more rare to have renal involvement. He was

explaining it

> to the medstudent in enthusiastic detail when he turned to me and

aksed if I

> had the rash. I am afraid I profoundly disappointed him by not

having the

> rash. It was a shame he would have liked to show it to the

medstudent.

>

>

>

>

>

[Guest guest]

Hi , thanks for the reply. So, you've never, ever had the rash?

I thought that was thee distinguishing characteristic of HSP in

everything I read. For it to be HSP I assume you must have some of

the other classic symptoms such as intermittent arthritic pain,

abdominal pain, etc?

As for renal involvement with HSP I'm surprised the doc would say

that. When kids get it they generally recover and do not have renal

involvement, but everything I've read about adults with HSP suggests

that there is eventually renal involvement. To what degree the

kidneys are eventually affected, who knows? Certainly not my doctor!

I'm assuming it is probably highly variable like IgAN.

So, just to compare notes, how long have you been diagnosed with HSP?

With IgAN? Did they diagnose both at the same time? Have things

progressed (creatinine, blood pressure, etc) since diagnosis or have

they stayed roughly the same?

Yeah, I'm going to ask the nephrologist next time I see him if it

would make sense to do a skin biopsy of the rash for IgA deposits.

Again I've read that's not a definitive diagnosis but it increases the

likelihood.

Take care.

BTW-What's an ARB?

> I also have HSP with IGA. (39 year old female) Right now I am

taking an

> ARB. I agree that it would be great to have a doctor who is

proactive. When I

> was first diagnosed I thought there would be some plan to prevent

all the bad

> possibilities from happening. I haven't found that to be the case.

It is

> mostly a wait and see approach.

>

> I don't have the rash so I can't help there. I was at the doctor

with my ten

> year old yesterday. He had a med student with him. When he was

going over

> the family history he commented on how rare it was for an adult to

have HSP.

> He said it was even more rare to have renal involvement. He was

explaining it

> to the medstudent in enthusiastic detail when he turned to me and

aksed if I

> had the rash. I am afraid I profoundly disappointed him by not

having the

> rash. It was a shame he would have liked to show it to the

medstudent.

>

>

>

>

>

[Guest guest]

Hi , thanks for the reply. So, you've never, ever had the rash?

I thought that was thee distinguishing characteristic of HSP in

everything I read. For it to be HSP I assume you must have some of

the other classic symptoms such as intermittent arthritic pain,

abdominal pain, etc?

As for renal involvement with HSP I'm surprised the doc would say

that. When kids get it they generally recover and do not have renal

involvement, but everything I've read about adults with HSP suggests

that there is eventually renal involvement. To what degree the

kidneys are eventually affected, who knows? Certainly not my doctor!

I'm assuming it is probably highly variable like IgAN.

So, just to compare notes, how long have you been diagnosed with HSP?

With IgAN? Did they diagnose both at the same time? Have things

progressed (creatinine, blood pressure, etc) since diagnosis or have

they stayed roughly the same?

Yeah, I'm going to ask the nephrologist next time I see him if it

would make sense to do a skin biopsy of the rash for IgA deposits.

Again I've read that's not a definitive diagnosis but it increases the

likelihood.

Take care.

BTW-What's an ARB?

> I also have HSP with IGA. (39 year old female) Right now I am

taking an

> ARB. I agree that it would be great to have a doctor who is

proactive. When I

> was first diagnosed I thought there would be some plan to prevent

all the bad

> possibilities from happening. I haven't found that to be the case.

It is

> mostly a wait and see approach.

>

> I don't have the rash so I can't help there. I was at the doctor

with my ten

> year old yesterday. He had a med student with him. When he was

going over

> the family history he commented on how rare it was for an adult to

have HSP.

> He said it was even more rare to have renal involvement. He was

explaining it

> to the medstudent in enthusiastic detail when he turned to me and

aksed if I

> had the rash. I am afraid I profoundly disappointed him by not

having the

> rash. It was a shame he would have liked to show it to the

medstudent.

>

>

>

>

>

[Guest guest]

How could you do such a thing ?? Maybe next time we'll loan you some

stage makeup...

Dealing with docs is funny. MPGN is rare enough that docs really like us.

was rejected recently by a pediatrician who refused to take new

patients who weren't infants. A friend suggested that I call back and

explain that has MPGN. Just for a cheap hoot, I followed her

suggestion. All of a sudden they had no problem taking him on as a patient.

At that point, however, I was considering a different pediatrician.

Cy

Re: Adults with Henoch Schonlein Purpura(HSP)?

> I also have HSP with IGA. (39 year old female) Right now I am taking an

> ARB. I agree that it would be great to have a doctor who is proactive.

When I

> was first diagnosed I thought there would be some plan to prevent all the

bad

> possibilities from happening. I haven't found that to be the case. It is

> mostly a wait and see approach.

>

> I don't have the rash so I can't help there. I was at the doctor with my

ten

> year old yesterday. He had a med student with him. When he was going

over

> the family history he commented on how rare it was for an adult to have

HSP.

> He said it was even more rare to have renal involvement. He was

explaining it

> to the medstudent in enthusiastic detail when he turned to me and aksed if

I

> had the rash. I am afraid I profoundly disappointed him by not having the

> rash. It was a shame he would have liked to show it to the medstudent.

>

>

>

>

>

[Guest guest]

How could you do such a thing ?? Maybe next time we'll loan you some

stage makeup...

Dealing with docs is funny. MPGN is rare enough that docs really like us.

was rejected recently by a pediatrician who refused to take new

patients who weren't infants. A friend suggested that I call back and

explain that has MPGN. Just for a cheap hoot, I followed her

suggestion. All of a sudden they had no problem taking him on as a patient.

At that point, however, I was considering a different pediatrician.

Cy

Re: Adults with Henoch Schonlein Purpura(HSP)?

> I also have HSP with IGA. (39 year old female) Right now I am taking an

> ARB. I agree that it would be great to have a doctor who is proactive.

When I

> was first diagnosed I thought there would be some plan to prevent all the

bad

> possibilities from happening. I haven't found that to be the case. It is

> mostly a wait and see approach.

>

> I don't have the rash so I can't help there. I was at the doctor with my

ten

> year old yesterday. He had a med student with him. When he was going

over

> the family history he commented on how rare it was for an adult to have

HSP.

> He said it was even more rare to have renal involvement. He was

explaining it

> to the medstudent in enthusiastic detail when he turned to me and aksed if

I

> had the rash. I am afraid I profoundly disappointed him by not having the

> rash. It was a shame he would have liked to show it to the medstudent.

>

>

>

>

>

[Guest guest]

How could you do such a thing ?? Maybe next time we'll loan you some

stage makeup...

Dealing with docs is funny. MPGN is rare enough that docs really like us.

was rejected recently by a pediatrician who refused to take new

patients who weren't infants. A friend suggested that I call back and

explain that has MPGN. Just for a cheap hoot, I followed her

suggestion. All of a sudden they had no problem taking him on as a patient.

At that point, however, I was considering a different pediatrician.

Cy

Re: Adults with Henoch Schonlein Purpura(HSP)?

> I also have HSP with IGA. (39 year old female) Right now I am taking an

> ARB. I agree that it would be great to have a doctor who is proactive.

When I

> was first diagnosed I thought there would be some plan to prevent all the

bad

> possibilities from happening. I haven't found that to be the case. It is

> mostly a wait and see approach.

>

> I don't have the rash so I can't help there. I was at the doctor with my

ten

> year old yesterday. He had a med student with him. When he was going

over

> the family history he commented on how rare it was for an adult to have

HSP.

> He said it was even more rare to have renal involvement. He was

explaining it

> to the medstudent in enthusiastic detail when he turned to me and aksed if

I

> had the rash. I am afraid I profoundly disappointed him by not having the

> rash. It was a shame he would have liked to show it to the medstudent.

>

>

>

>

>