Hsp/iga vasculitis

[Ravi35]

Hi all I'm new to this, is there anybody out there with hsp/iga vasculitis? I've looked in here but posts are very old over a year ago.

[hamble99b Volunteer]

hi and welcome Ravi, I don't but, hopefully, some people will be on in the coming days who have.

if you click on this link

vasculitis.org.uk/

it should take you to our main site.

if you search for the "route map to vasculitis" it should lead you to the online version and you can find excellent info on all aspects of vasculitis in there.

regards,

hamble.

[Ravi35 in reply to hamble99b]

Thank you

[loobylou55]

Hi Ravi - I had/have HSP. I'm actually off to the doctor today to see if the inflammation markers have gone down now. It started in Dec 2013 with a red dotty rash and developed during January into awful ulcers on my legs and feet. They've all healed now but it's still been lingering inside...

[Ravi35 in reply to loobylou55]

Hi hope it goes well with your appointment, I have had this since may 2014, only found out this year what type of vasculitis I have, I find seem to be going into remission, taking steroids etc.

[Alisa1]

Hi I was diagnosed with HSP in 2009. I'm on Dapsone every day and have been for 2 years. To be honest I'm so frustrated with the info I had from hospital. Very vague apart from the diagnosis after months of tests. Every part of my body was covered apart from my head and neck! The rash was sore and itchy and only keeps away because of Dapsone. I worry for the long term effects but what choice do I have. I have regular blood and urine tests at docs but feel alone in dealing with it apart from that. I feel my doc doesn't really understand it anyway so can't offer support. That's why I joined this site I'm hoping someone can shed more light!!

[Ravi35 in reply to Alisa1]

What hospital do you go and see? Are they rheumatology, or vasculitis specialists?

[Alisa1 in reply to Ravi35]

I went to kings mill in mansfield near where I live. I went to dermatology department!

[Ravi35 in reply to Alisa1]

You need to push to be seen by a rheumatology or a vasculitis specialist, the top one is called addenbrooks it's far though. It's not just about the rash, there a lot that can go on in the inside too. Speak and push your gp. I had to research mine and tell my gp as most gp do not know much about vasculitis.

[Alisa1 in reply to Ravi35]

I will try thank you. I was in remission for 2 years then it came back in 2012 and hasn't gone since. If I stop taking dapsone the rash comes straight back. Just lately I'm aching and when I get up in the morning it takes me a while to Un stiffen!! I know I turned 40 this year but I'm not past it yet!! It's v frustrating because as you say the rash is on the outside so what's the cause on the inside. Do you still get the rash or ever had rash?

[Ravi35 in reply to Alisa1]

I get it some times last one was in the beginning of au gob my chest, my problem is more with the inflammation inside my body, abdominal pain I was hospitalised for a week in June, having a kidney biopsy in sept, the rash started first on my legs and swelling.

[jackiec43]

Hi Ravi I have Hsp have had it for several years & like you found it hard to find people with the same diease, & i think finally i have x

[Ravi35 in reply to jackiec43]

Hi, it's quite rare in adults and doesn't look like people or medical professionals get it either. Are you in remission?

[loobylou55]

My dermatologist told me it'll go - I was hoping I was on the mend?! I still have some inflammation showing in blood tests but it's steadily reducing. My kidneys haven't been affected - that sounds awful Alisa, I'd thought my stiffness was age at first. The rheumatologist discharged me and now the derm has too - just left with about 20 scars on feet & lower legs x

[jackiec43]

Hi Ladies & i also took Dapsone for a long time then they stopped them & gave me steroids & lots of other medication, my kidneys seem to be ok @ the moment all thought they do find blood in my urine when i do a test, It is true that lots of people dont know about this diease, when i was admitted to stepping hill the nurses on the ward didnt know anything about it so one of them took the time to look it up on the internet & she put notes in my records, My local hospital doesnt know anything i have to explain it to them, which can get annoying when you are telling several people one after the other, My Gp always sends me to see the consultant because he doesnt know enough about it, I also suffer from stiffness in my joints which is very painful some times, & like you looplou50 i have lots of scars on my legs which i hide with maxi dresses, Can i say it is nice to have other people with this condition to talk to, Ravi i think we have spoken on Facebook love x

[Ravi35]

I have joint pains too, so hot all the time, getting out if breath so easily , they too keep finding blood and protein in my urine, now hoping for a kidney biopsy, last time they cancelled righty up to the point I was in the ward with a drip on. I can feel my body going down hill and am do scared it's going to crash down in me again like on June on my sons birthday, luckily I had done all the party etc for him, them suddenly the abdominal pain got so bad I thought I was going to die, stayed In hospital for a week, been off sick from work since. Back into 20mg pred, myco, omeprazole. I really feel like my to is coming and this condition will take me, I am losing hope in ever getting into remission. But I know I must be strong for me kids & hubby.

[kaitlyn14 in reply to Ravi35]

That sounds exactly like me. My doctors have seemingly diagnosed me with IgA but then they don't know what's going on. every time my rash gets bad my ankles automatically swell up. Every time I think I go into remission it comes back. The abdominal pain is unbearable {I had my doctor write a note to the school saying that I could miss for abdominal pain but they still give me unexcused absences which can send me to court for truency}. No one seems to get the disease one of my doctors, and I quote said. "You probably know more about this than I do." I also have protein and blood in my urine but they are not sure what it's from. I've been in the hospital on iv because i've randomly passed out an have been in pain. I am 15 and I swear that I can't even wear a dress or a skirt anymore without being made fun of for rashes being on my leg. Sometimes i have to wear long sleeve shirts because it spreads to my arms, even in the summer.

[sleepy60]

Hi I have been told I have had hsp, I am 53 and have several other issues, diabetes, hypothyroidism, pcos, fibromyalgia. Since being ill in october with sinus, throat issues which didnt go away had rash on both legs & feet, saw rheumy in march & all they did was look at my rash! Did bloods, chest x ray & sent me home. Not impressed! Went back end of july at gp request, ther were 3 rheumy & 1 immunologist in room. Obviously didnt see why I had returned! Said it couldnt be churg strauss as anca -ve. Even when I said not everyone has them, no reply, asked about new dry eye symptom, again not v interested. When iasked about lymph node under arm she said "whats it got to do with us" so much for telling them all your symptoms!As far as it goes im obviously over it & that is it. Have still got problems with legs & feet swelling/hurting, but no rash, so gp says not the vasculitis. I feel v neglected & all stuff on net refers to kids which doesnt make u feel as if u belong!

[jackiec43 in reply to sleepy60]

Hi Sleepy i am so sorry that your gp has made you feel this way, i would keep going back & ask to see someone else, It does say on the internet that this illness if a childs one but i am finding out more & more adults have it we just havent been looking the right places x

[Ravi35]

So very true not enough info fir adults with hsp , all the internet states it's more serious for adults!!!!!!!!

[PatriciaAnn]

Have you seen the HSP page on the V-UK website? vasculitis.org.uk/about-vas...

It does say that HSP mostly affects children under 10 but it does say that when it affects adults it can be serious. There are a couple of links on the page to papers on HSP or where HSP is mentioned.

I understand that there may be a new HSP page produced for the website, with more details about adult HSP, but I don't know when that is going to be - which doesn't really help at the moment I know.

PatriciaAnn

[Ravi35 in reply to PatriciaAnn]

Hi thank you, I have read so many articles on the vascy site & so many others on google it's the same thing quite common in kids more serious in adults, but then not any information for adults. Thank you for helping

[Sh071012]

Hello Ravi,

I was diagnosed with hsp/iga nephropathy in 2010. Almost a year had passed before I received a diagnosis, it was also confirmed through a kidney biopsy. I was given a high dose of prednisolone and mycophenolate sodium which was eventually tapered down over the years. It did go into remission for a good 18 months, even though I have experienced flare ups before this. However, very recently I have experienced yet another flare up and even now I still find it frustrating living with vasculitis. I have my good days and also bad days. My treatment has been increased because of my recent flare, but I find taking it easy and resting when I need to helps a great deal.

do you find anything in particular makes it worse?

I have noticed when ever I have pushed myself too much or have been stressed/run down doesn't help and can sometimes make my vasculitis worse.

I havent been on here for quite some time, but its nice to come across a post that I sometimes looked out for after receiving my diagnosis.

Take it easy

[Ravi35]

Hi, I find that too, if I over do things or stress a lot I get flares.

I'm on my third attempt at tapering fingers crossed I will beat it this time, they have increased my methotrexate and lowering the pred.

How are u feeling now?

I

From this whole experience I have learnt that I really can't over do things as it will make me I'll. Sounds silly but that's how j cope

[shelly6783]

Hello everyone......I am 31 years old and I was diagnosed with this horrible disease just last month. The rash started just after a 5 mile walk that I took to relieve stress and lose some weight. I went home and my legs were a little sore and I assumed that over did it with the power walking. The next day I had a few dots on my ankles that faded away in a few days and i really thought nothing about it. I started a new job as a runner at a local restaurant. A few days later, i noticed that I was getting more dots and they were spreading up my legs and it occurred after being on my feet for a few hours. I went to my primary doctor and she had the slightest clue about what was going on. She ran some blood test and it all came back good. I made an appointment with a dermatologist. A week later, I was hit by a car while walking to my car. The rash was everywhere the next day, I could barely walk. A week later I went to the dermatologist and he ran blood test for hep A-C, symphilis, ebstein bar, mono, strep, and all came back neg. Thank god! He also ran 2 biopsies which both resulted in hsp vasculitis. I was sent to a nephrologist who took a metabolic panel and a urine test. I had blood in my urine and my protein is a normal range. I a went to a gastrointestinal doctor but he was clueless and told me he would see me in to months.

This disease is horrible and I wish more was known about it. The rash is unsightly and the arthritis is unbearable. My knees, ankles, and hands swell up. The rash is on my legs, ankles, butt, elbows trunk, and sometimes appears on my feet.

Tramadol doesn't really help, I was up to 4 am last night with pain. I am taking nothing but the tramadol and tylenol for the pain.

Like so many of you said its not easy to find much information on this for adults. Though it's unforunate that you all are going through this, its nice to know I'm not alone.

[heloisesreshta]

Hello.

Its good to finally find people who have are going through the same thing.

20days back I started getting rashes on my leg assumed it was mosquito bites. Then learned its a form of vasculitis.

My doctor is still doing tests on me. The rashes keep appearing on like Thursday or Friday and reduces by Monday.

Now My ankle has started swelling. My doctor is not prescribed anything until my skin biopsy and other reports come in.

From which country are you guys from. Does anyone have any throat infections or any other.

The worst part of this sickness is event internet doesn't give a clear picture about this.