Are you still getting rashes till date?? Even after all this years. I suffered from Hsp since the May of this year and after almost 8 months, my rashes won't go away. I can exercise. My leg starts to hurt bad and red rashes spread around my legs and hands. So will I have to live with these rashes, not being able to exert myself?
As a parent you are entitled to complete an MHRA yellow form to report a possible adverse reaction. Put in all the details, including dates, batch numbers (they should be on the vaccine record you were given after he had the jab).
Have a look at some of my posts - we've had some success with some treatments.
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
My son is 10 and has been suffering with HSP for 4 months. Yes he experiences arthritis pain. I hope it gets better and I am scared that he will always suffer this pain.
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.
Hi Aine
I'm so sorry to hear about everything you've gone through but it's very similar to me.
On the Monday I went the drs feeling very fatigued tired, unwell so they sent me for blood tests.
The Tuesday my stomach swelled with the worlds worst cramps, Wednesday morning I went to a&e and they told me I was constipated and to take ducal.
Thursday I developed a rash on my hip which spread all down my legs to my feet, attackig my feet the worst. I went back to a&e again worried I had meneigitis, they confirmed I didn't and gave me 30mg of prednisone and sent me home. That night my wrists and hands swelled so bad I couldn't use my fingers and I ended up back in a&e so they doubled the dose and again sent me home. Two days later I ended up with swollen knees and ankles and couldn't walk and my rash had become inflamed and created Ulsers all around my ankles and I ended up hospitalised for 2 days.
I had no blood in my urine or kidneys and all bloods are normal.
4 weeks later my rash has calmed down, my legs are still ulcered and I feel terrible, I have terrible head ache and just want to sleep all the time, I just feel so low In energy and rubbish, did anyone else experience this?
I'm a 26 year old personal trainer so usually fit and well, and this is really getting me down now. I just want it to be over with as it's effecting my life so much
Hi Aine
I'm so sorry to hear about everything you've gone through but it's very similar to me.
On the Monday I went the drs feeling very fatigued tired, unwell so they sent me for blood tests.
The Tuesday my stomach swelled with the worlds worst cramps, Wednesday morning I went to a&e and they told me I was constipated and to take ducal.
Thursday I developed a rash on my hip which spread all down my legs to my feet, attackig my feet the worst. I went back to a&e again worried I had meneigitis, they confirmed I didn't and gave me 30mg of prednisone and sent me home. That night my wrists and hands swelled so bad I couldn't use my fingers and I ended up back in a&e so they doubled the dose and again sent me home. Two days later I ended up with swollen knees and ankles and couldn't walk and my rash had become inflamed and created Ulsers all around my ankles and I ended up hospitalised for 2 days.
I had no blood in my urine or kidneys and all bloods are normal.
4 weeks later my rash has calmed down, my legs are still ulcered and I feel terrible, I have terrible head ache and just want to sleep all the time, I just feel so low In energy and rubbish, did anyone else experience this?
I'm a 26 year old personal trainer so usually fit and well, and this is really getting me down now.
I have had this 18 years now and am still having flare ups . Going through a bad one now rash from head to foot making breathing and swallowing painful. Mine seems to be driven by hormones. Every period would cause a flarge up. Now after hitting the menopause and missing periods for a few months I have had the week from hell as a period started out of the blue . No amount of medication is helping to even hold it even right now.
It's a horrible painful invasive illness that is leaving me unable to walk at times. The rash is not the problem for me it's the pain that comes with it .
As a parent with a daughter who had HSP when she was 8years old and is now 12 years old, it seems that she has never recovered her health and I wonder if this has happened to others who have had a history of HSP. Her proteins were clear after a year, but she has had continual ongoing chronic fatigue, nausea, headaches, and very poor sleep or recovery from sleep. The illness itself was horrendous but according to the urine and blood tests she is clear of the HSP itself. The CFS/ME clinic here say she does not fit their usual profile for ME, but her health is so debilitated after four years of no recovery of her energy .. she has not grown as one would expect for her age as she has absolutely no energy to engage, struggling with constant pain and fatigue, always getting viruses that last longer than they do for others. She is underweight and her height barely keeps to her projected chart, often dipping for awhile. I am being told there is no ongoing immune reaction issue post HSP, but I am really doubting that when I see her struggle.
Hi Aine, I am reading thru your long post and found some helpful information too. I am Agatha from Malaysia, now 35, I was diagnose with HSP early year 2015, with rash and joint pain all below my body... my toes, feet and fingers were swollen until i can't walk... it just came suddenly and all happens within hours.
It took me two weeks to get admitted and started treatment under HSP, the doctors who treated me inform me that they have not seen HSP patients, so I just rely on Google to find out what is happening to me... and make me feel that I am not alone...
I am a mother with 2 year old toddler that time and was planning to conceive for a 2nd child, but doctor has advise me to give up, my husband too agree to stop so i have to stop...
Then life goes on with on going Urinary tract infection, kidney infection and my days are full with pain and unhappiness, on and off rashes and join pain... for 2 years... every month also do urine test and ASOT blood test for every 3 months...
then i still experience swollen feet and face... but i change my diet with home cook food at least dinner with balance diet less meat, chose a non hectic job to cook and care for my son... took daily vitamin c and fish oil.. with slow exercise daily (I am patient of costochondritis hence no extreme sports) just to keep my fitness according to my own pace...
I must say, these rashes have not occur since the whole last year and my swollen condition has improved dramatically... I hope this can go on for as long as it can be...
I hope my experience can help others too...
Hiya, my dad just diagnosed few weeks ago with hsp Vasculitis as he also has rhematord arthritis, the rash and sore joints have calmed down he’s been in and out of hospital and in a hospital bed now starting to deteriorate, in wandering if there’s any tips to help kill the rash as it’s starting to spread again, we also live in Northern Ireland my dad is 57
How are you now? I hope you are well but I'm curious to know how long did it take to finally not feel the symptoms of HSP.
My 8y/o daughter was diagnosed of HSP last year May. She is much better now but we have restricted her physical activity. We are homeschooling her to avoid germs. It has been almost an year but even now when she goes to the park and play and play around she still gets rash.
Just want to know how long did the symptoms persist?
Thanks.
Hello DadinTx,
May I ask whereabouts you are living, is it the UK or other? I felt so relieved for your daughter to hear what you have done re home schooling, and taking care that she doesn't become overly exhausted or push herself too hard post HSP. Looking back, if I knew what I do now about Chronic Fatigue / ME I would have kept my daughter off school for a year at least, rather than the 3 months in which she was visibly ill. She was very very anxious about returning to school and when I look back, it was too harsh dragging her in day after day, and watching her just cling on with an iron-will because it was expected. For us, sadly, she has not got better yet, she went on through primary and into secondary, so now Year 8, with what has become a very reduced timetable and huge swaths of absence. She has not had the energy to develop more widely like her peers. There are others I have heard of who are more fortunate and they do fully recover and return to a full life.
I am continually trying to research what could possibly be causing her mix of symptoms and to get some sort of help for her medically. It is like her autonomic nervous system has been 'damaged' by the HSP or perhaps the virus that brought the HSP on, or perhaps she had an underlying issue that was not an issue until the HSP. The paediatrician suggested asking about as I have as there seems to be no ongoing follow up of HSP patients over time.
Does your daughter sleep well? Does she have headaches? Does she have tummy-aches on going? Is she far more physically anxious than she used to be? Does she have little episodes of shortness of breath suddenly out of no-where, not to do with exercising?
I wish I had taken care of my little girl as you are yours. Do let us know how long this goes on for with you and her, and if she does seem stronger and stronger over the coming months. What sort of rash does she get .. the actual purpua back, or more a bumpy red rash?
Just wondering how you are now? Have you had a HSP diagnosis?
Hello..ive been diagnosed hsp when i was 6 yrs old .they done blood transfusion,many laboratories tests..my neck gots bigger,i cannot walk for a month..and now i am 32 yrs old,my hemoglobin is always low and i always suffer from abdominal pain and arthritis..
I just want to know also,,if its possible to attack again