IS THERE AN END TO HSP EVEN AFTER ITS GONE???

I want to post this for those seeking help with HSP. I'm 32 and have battled this since I was 14. The key for me is fish oil and an ACE inhibitor for my blood pressure. By far, FISH OIL is the most important factor in helping with the rash, abdominal and joint pain. I typically take around 4-5 grams of fish oil. I select a fish oil with high EPA and DHA. About 1.5 grams of EPA and 1 gram of DHA. Depending on the brand of fish oil, that can be 3 or 4 pills, or as much as 10 per day. This has been very helpful for me, hope it can help you or your loved ones.

Hi I had/have hsp I don't believe it ever leaves sorry to say I think it goes back dormant and likes to remind u every now and then.

I was 5/6 was I first took I'll but that was 24 ish years ago, they didn't no what was wrong with me and put me on a ward with children who were given a short time, my mother thought I was dying. No1 new what the pains, swellings and spots were. Eventually my kidneys started to get damaged.

All sorts of drugs I had to take from doctors just didn't work.

After ending up in a coma someone or somehow new what was wrong with me, took time for me to start eating for my self and feeling sick all the time didn't help.

Having blood test and ultra sounds on my kidneys. They finally found away to help me. In my opinion I didn't not fully recover I would say 70% recovered. 25 years later I still get a strange feeling that I had as a child when I new it was just about to get bad, it's reminds me every now and then I'm a fighter and if I can anyone can.

It's frightening when u have more than a handful of episodes of hsp. I'm not sure how long I was in hospital with it but I do no I was there long enough to have to go to the hospital school.

Chin up as I say if I can anyone can

Hi I live up in the North of Ireland and I got very sick around the start of December I kept going to work and was just coming home and falling asleep it was awful I just thought that I had the flu. I went to the boxing day sales and was falling asleep in Boots chemist at 7.30am arrived home and kept going to work. On New year's eve I arrived home from work and my legs were very heavy and I had a sore head. I said to my hubby that I was going for a bath and I took my trousers off to discover my legs were plastered in a rash. He took me straight to hospital and my blood pressure was so bad I had IV antiboitics and injections. That was on a Thursday I got moved to a ward on Friday and was just been given pain killers. I started to be sick on the Monday and my knees and elbows were in so much pain that I could not walk. On the Tuesday the doctor came in and said that he wanted me to go and see the skin specialist the following morning. So I was sent down to them and they drilled into 2 parts of the rash for biopisy. I was wheeled back up to the ward and the consultant came in and told me I could go home but I had to rest. The following day it was confirmed that it was HSP and that they would have to keep check on my kidneys. I have been eaving samples in every 2 weeks for the past 6 months and so far there has been no blood in them but 2 infections. My joints would still get very sore but thankfully I have not been in as much pain. I don't think people realise how dangerous it really is. I hope everything clears up for you and I am always here if you want to chat x

Hi, my name is Helen, 18 y.o.. and I'm from Indonesia. Several months ago I got HSP. So at the first time i felt pain at foot joint. I went to the local hospital. The doctor said it was joint inflammation. and then he gave me anti biotics, and other inflammation medicines.

Several days after that, there were rashes all over my leg. Then i felt the abdominal pain till I felt like I was going to vomit. (I lost a few kilos because of this) Then my mom took me to the bigger hospital outside the city. The doctor said that it was HSP, they gave me steroids and pain killers.

My mom and dad were really concern about the steroids. Then we went to Singapore for second opinions. i forgot the name of the doctors, but they said the same thing. I got HSP. Then i had my blood check there. It was positive.

After that they gave me steroids too, but in the smaller portions.

Well, I still feel traumatic with this disease, because at the same time I got HSP, I was having my national examination and practical exams (including sports) in senior high school. I had to rush studying what I had missed and it was so hard since I've just recovered.

I still have the rash prints on my legs till this day. But I'm very glad I've been through it. No. WE have been through it. Now I'm just hoping that it would never reappear.

Thank you.

Hello, I had been diagnosed with HSP about 10 years ago now. I am from Canada and currently 18 years old (I am also a female). I have never spoken to anyone else who has had the disease, I've never actually spoken about it at all besides with my parents..

The first thing to hit me was the crippling arthritis pains which was followed by the rash and soon after kidney failure. The bowel symptoms was never something I had suffered from, and by the looks of everyone's experiences I've read here I am grateful. The kidney failure though, was something not every 8 year old is happy to hear about, especially when you hear your mother crying and praying every night for a kidney to magically appear for you. And every morning driving to the hospital to drop off your urine sample and how "today we're going to find out you're fine" as I held a red tinged container in my hand. I wasn't sure if she was trying to reassure me or herself. Sometimes I think she took the disease harder than I did..

After being put on a strict diet ( I don't know if it's still around but I was perscribed this awful green grainy canned drink that made my stomach churn everytime I cracked the top open, I had to plug my nose as chug). My symptoms began to clear after a few months(maybe 8) and my kidneys began to function properly again. Everything had gone away except for my arthritis pains. Of course I've had the occasional flare ups from time to time and I will get pains in my kidneys which is when I know it's time to head to the doctor. I don't usually worry about the red tinged urine anymore since I am a woman it is usually followed by a certain monthly "gift". The disease really depends on who you are, some people will contract the disease and never have another episode again. If you're like me you may have the occasional flare up if there is still active disease in your system.

My reasoning for reaching out finally is that for me, from the waist down I have been suffering from arthritis for the past 10 years. After reading extensively into medical journals and about other people living with HSP, no one ever mentions if they still have symptoms of arthritis besides myself. I am curious to know if any of you (children, friends or family) that have suffered from the disease still experience arthritis pains after the other symptoms have gone away? Just to to know if this is actually more common than I am lead to believe...

 

Hi Aine,

Unfortunately there is no end to this condition, you just have to manage it. I am currently on prednisone and Imuran which have been helping a lot. I have been told by my rheumatologist to avoid antibiotics and don't get any vaccinations (my flare was caused by a typhoid injection). It's really not fair that we have to suffer with this and it's very hard to deal with but you will be able to manage this and get by, it just takes time and getting to know what works for you.

I had it over a year already and I hate it. It also killed my kidneys a month after I got the disease meaning I need dialysis..I hate life right now, it's hard to stay positive

Hi. I am a 13 year old female.

I got diagnosed with HSP when i was 7 after i developed a rash on my legs.

I rarely got abdominal pain my pain was mainly in my joints and my legs.

One night the pain got so unbearable that i couldnt walk, the next morning the pain had gone but i still had the rash so my mum took me to the doctors where i saw my usual nurse. She examined tge rash and didnt know what had caused it so she called in a doctor who also examined the rash. He suspected HSP but sent me to the hospital for further examinations. There they took my blood presure and blood tests which then confirmed i had HSP. After being diagnosed with HSP i had to have my blood presure checked weekly so to stop me having to miss school i had a nurse that cane into my primary school every week to check my blood presure.

After two years of the pain and having my blood presure checked i went to the hospital for my check up where they checked my blood presure and did blood tests and they then gave me the news that i no longer had HSP.

I still get the pain in my legs sometimes but not as bad or as often.

Its good to know that there are other people out there who have suffered the same thing as me.

Hello i am a 19 year old from USA ive had HSP for the last 3 years.

At first i started treating a cold/flu with an anti biotic i had never taken before. Soon after a chicken pox looking rash showed up on my knees, feet, and elbows. About a month went by and every doctor i saw was baffled at the sight of my condition. I was even kicked out of school because of the suverity of my condition. The rash turned into something exactly like shingles. I literally looked like a burn victim. I could not walk. I was in a wheelchair for a few months. When no doctor could diagnose me I decided to go to the emergency room where nurses came in wearing hazmat gear when they saw my feet. The next day i was diagnosed with HSP. I was discharged a week or so later on bed rest. The rash eventually went away and the scars healed. But I still suffer from joint pain everyday. And everytime i get cold/flu symptoms the rash and nausea comes back. Never as severe as the first time i had it but it still is very difficult to go through.

Hello, my daughter is 4 years old she has had hsp for 2 years now, she hasn't gained weight, she don't have the rash but she comes out in bruises everywhere, she has swelling to her face, hands, legs, feet and tummy, she is always crying that her tummy hurts,

I actually hate hsp they say it's only meant to last 6-8weeks hers has been 2 years now and still she struggles daily.

There's days like today when she can't even move her own body.

I check her urine daily and she has protein and blood in her urine .

How can I help her x as a mum I feel like total let down as I can't take the pain away x thank you c

I think realistically it stays there. Iam pretty much pain free now, had it 5-6 years back, apparently from all likelyhood a bite while in Angola. it lasted about 7 months. The most horrible , painful scary experience of my life. Nowadays, although more relaxed, I'm always scared of it coming back. I have the odd breakout of rash, usually feet or shins after a long haul flight, but evenings where I am standing long, and drinking lager!...I get a bit of rash! nothing bad just a bit weird.

During the ilness at it's hight, I was in the bath 2-3 times a night to ease lower back pain, the rash coming in bouts on in about 4 day cyles. THe bowel pain was immense. It did however all receed, I think the mental scars will always be there.

I'm now a long way away from the joint pain that still gives me shudders thinking of it, my pain started hours after the innitial rash, then by the days end I had to be lifted from a wheelchair to a hospital bed as I couldnt move my legs or arms.Thankfully I was given Steroids which in all likelhood saved my kidneys(touch wood)

I don't believe I will ever be confident It wont happen again, but take some solace in the fact I, myself feel 200% better these days and pretty much lead a normal life.

 

Hi,

I'm 27 years old right now and I had HSP in January of 2015 (5 weeks duration). The abdominal pain was very intense in the hospital. There was no kidney problem, just the skin rashes and pain associated with inflamed bowel. Now I'm with intense abdominal pain again (2 months duration), with no kidney problem but without skin rashes. I did an endoscopic capsulo exam and my bowel is injured with some eruptions. One doctor said that it seems to be a visceral HSP and other said it could be HSP or Crohn. Anyone got a similar problem? I do not have diarrhea, vomit or other symptoms of Crohn and my colonoscopy is normal, just the middle of the bowel is injured. Thank you I hope a good recovery for us all.