New here and Re: Adults with Henoch Schonlein Purpura(HSP)?

[Guest guest]

Hi Rob,

Welcome to the group. There are a number of us here with HSP and IgAN,

myself included.

Your experience is pretty typical. Once you get your first flare up, they

seem to go hand in hand with subsequent viral illnesses, and especially with any

type of respiratory illness. I am sorry you have IgAN and HSP.

Unfortunately, there is not much proactively you can do, other than to take

ACE inhibitors and/or fish oil both of which seem to have some renal protective

measures. As far as what caused it, nobody knows what brings it on, but

commonly first symptoms appear around the time of viral illnesses. The things

that seem to help me are exercise, and getting enough rest. I really had to

learn to slow down and listen to my body. I need so much more sleep now than I

ever used to, and that takes some adjusting to.

Feel free to ask any questions you may have. I also always recommend to new

members that they look through our sister site, www.igan.ca because there is

lots of information there presented from a patient's perspective.

Welcome again!

In a message dated 4/20/2004 9:59:39 AM Pacific Daylight Time,

rbayahoo@... writes:

> Like Jack and Ian I've wondered what might have caused it and what I

> can proactively do to help, but I guess nobody really knows. I know

> a year ago there was nothing wrong on urine tests. In the months

> before the rash I had three bad lots of tonsillitus. Similar

> infections seem to now trigger the flare ups and I seem to be very

> prone to those infections.

[Guest guest]

Hi Rob,

Welcome to the group. There are a number of us here with HSP and IgAN,

myself included.

Your experience is pretty typical. Once you get your first flare up, they

seem to go hand in hand with subsequent viral illnesses, and especially with any

type of respiratory illness. I am sorry you have IgAN and HSP.

Unfortunately, there is not much proactively you can do, other than to take

ACE inhibitors and/or fish oil both of which seem to have some renal protective

measures. As far as what caused it, nobody knows what brings it on, but

commonly first symptoms appear around the time of viral illnesses. The things

that seem to help me are exercise, and getting enough rest. I really had to

learn to slow down and listen to my body. I need so much more sleep now than I

ever used to, and that takes some adjusting to.

Feel free to ask any questions you may have. I also always recommend to new

members that they look through our sister site, www.igan.ca because there is

lots of information there presented from a patient's perspective.

Welcome again!

In a message dated 4/20/2004 9:59:39 AM Pacific Daylight Time,

rbayahoo@... writes:

> Like Jack and Ian I've wondered what might have caused it and what I

> can proactively do to help, but I guess nobody really knows. I know

> a year ago there was nothing wrong on urine tests. In the months

> before the rash I had three bad lots of tonsillitus. Similar

> infections seem to now trigger the flare ups and I seem to be very

> prone to those infections.

[Guest guest]

Hi all,

I'm new here and thought I would introduce myself. I am 35 from

England. I've been reading the past posts, but the one from Jack

below more or less describes my exact situation.

I have not been formally diagnosed, (no biopsy), but based on

symptoms the suggestion is HSP/igaN.

Last October I got a rash on my legs and then arms, and also aching

joints. There was signs of protein and blood in the urine. The

hospital kept me in for a week while they figured out what was

wrong. I felt fine and like a fraud.

In December I had a first " flare up " with a small amount of rash.

This last week I've had a second flare up, this time with no rash

following a throat infection.

The results from the hospital were apparently borderline for a biopsy

(I think it was 300mg protein and fairly normal creat). I should

find out more on Thursday when I see my neph for a follow up

appointment and get the results from a couple of 24 hour

collections. Dipstick tests generally show + for protein

(occasionally ++), and instantly go off the scale for blood. Blood

pressure is generally good.

Like Jack and Ian I've wondered what might have caused it and what I

can proactively do to help, but I guess nobody really knows. I know

a year ago there was nothing wrong on urine tests. In the months

before the rash I had three bad lots of tonsillitus. Similar

infections seem to now trigger the flare ups and I seem to be very

prone to those infections. It's a coincidence I guess based on age

and playing sport, but a bad toe infection, probably athlete's foot,

was the one thing whilst in hospital I received treatment for.

All the best to everyone,

Rob

> > 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]

Welcome to the email group, Rob.

Pierre

New here and Re: Adults with Henoch Schonlein Purpura(HSP)?

> Hi all,

>

> I'm new here and thought I would introduce myself. I am 35 from

> England. I've been reading the past posts, but the one from Jack

> below more or less describes my exact situation.

>

> I have not been formally diagnosed, (no biopsy), but based on

> symptoms the suggestion is HSP/igaN.

>

> Last October I got a rash on my legs and then arms, and also aching

> joints. There was signs of protein and blood in the urine. The

> hospital kept me in for a week while they figured out what was

> wrong. I felt fine and like a fraud.

>

> In December I had a first " flare up " with a small amount of rash.

> This last week I've had a second flare up, this time with no rash

> following a throat infection.

>

> The results from the hospital were apparently borderline for a biopsy

> (I think it was 300mg protein and fairly normal creat). I should

> find out more on Thursday when I see my neph for a follow up

> appointment and get the results from a couple of 24 hour

> collections. Dipstick tests generally show + for protein

> (occasionally ++), and instantly go off the scale for blood. Blood

> pressure is generally good.

>

> Like Jack and Ian I've wondered what might have caused it and what I

> can proactively do to help, but I guess nobody really knows. I know

> a year ago there was nothing wrong on urine tests. In the months

> before the rash I had three bad lots of tonsillitus. Similar

> infections seem to now trigger the flare ups and I seem to be very

> prone to those infections. It's a coincidence I guess based on age

> and playing sport, but a bad toe infection, probably athlete's foot,

> was the one thing whilst in hospital I received treatment for.

>

> All the best to everyone,

>

> Rob

>