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

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I am 22 year old female from Ireland.I have been suffering with the horrible disease of HSP for 2 months

This is my story...

On the 28TH of February this year I woke up with abdominal pain i thought nothing of it at first but as the day progressed it got worse and worse so bad it was unbearable and I couldnt even walk straight it wasnt the type of pain either that gave you a break it was everlasting and very weakening.2 days later when I couldnt bear it any longer I attended the A AND E Dept in waterford Regional Hospital where Im from in Ireland.They Told me that it was infact a ''knotting of my stomach'' and the prescribed me with medication.I had infact at the time of my examination already developed signs of a rash on my legs and feet.

2 days later from that and no better I got very sick during the night,at this stage I was vomiting and the rash had got much more agressive covering my legs and also the end of my back which was the worse of all.My family became very concerned so during the night I travelled to a care doc.

The care doc was puzzled as to what was wrong and could not find anything wrong with my stomach on examination so gave me different medication and told me to go home and have a hot choclate!

Days dragged on and I was feeling worse and worse I was sweating one minute and cold the next I got so weak I could not move from my bed.The third time a doctor was called.

The doctor took my blood pressure and was astonished as to how high it was for my age,she examined me and on examination she called for my parents to call an ambulance straight away..she diagnosed me with mengicocal menengitis and gave me 3 injections of anti biotics..the ambulance rushed me to hospital where I spent a week and where they confirmed it was not menengitis but a viral infection.They killed the pain with painkillers and told me there was nothing else for what I had only that it had to go by itself.I was left out the following week as the rash had faded and I was in no more pain but felt very weak.

It wasnt long I was home and the rash started up again folowed by the abdominal pain,as the days went on I deteriated once again and another doctor came as I could not move from the house as this time my joints had become inflamed and my knee was twice its size.

It was only this time that the doctor that visitied diagnosed my disease for what it really is.HSP.He recognised it by the rash and asked me if it has started at the end of my back,which it did.

He said that I needed to be hospitalised in order for the pain to be controlled and I needed Steroids as a last resort.However he said that I did not need to go there till the next morning as the only worry was my kidneys with this disease and that in itself would take years if they were to be affected.

The next mornin I returned to hospital again along with the doctors letter and its only then they confirmed that I had this disease.

They sent me home with a small dose of steroids but the following week the dermatologist took me off them as symptoms were dying down.

The following week to no surprise I woke up during the night with rash on my legs and stomach pains I tried my best to leave it go by itself with painkillers but it just got worse and worse and ANOTHER doctor was called.The doctor took my blood pressure and said that it was dangerously high and called another ambulance.

all that night in the hospital i was vomiting I hadnt slept in days and i thought id never sleep again the pain in my stomach was so bad and nothing would take it away.I could not go to the loo without the aid of someone with me as i was so weak shakey and dizzy.However I was greatful the swelling had not come back.

After 3 days of no sleep and constant nausea a doctor was called to my bedside suring the night I was sweating so bad and blood pressure had risen again I could not eat or drink without aid of a drip,the doctor decided to try the steroids again through an injection.No sooner had he done so when the abdominal pain left.I was never so relieved in all my life,it felt like he was god!!!!!

i could sleep first time in i couldnt even remember!!

The morphine had been very good for killing pain all along but knwoing it was gone without a painkiller was something else!

The next day I was left home and symptoms had all gone.....for a week..

I woke up not being able to lift my head with the pain in my head and my neck,It was such a fright I began to panic so bad and it was clear i needed another doctor.

The doctor arrived and on seeing how much distress i was in called the hospital who informed her to call another ambulance and have me straight out.

My consultant was waiting for me as I arrived at the hospital as the symptoms pointed towards menengitis they were worried and I was brought down for a CT scan and also a lumber puncture(one id like to forget) and i was giving a room in isolation.It took several hours for the results to be confirmed that I did not have menengitis.However I was kept in isolation for the next few days and treated with painkillers and anti biotics..before being told I could go home.

That has been 3 weeks ago, I still have scars from the rash of my HSP..i still get the regular headache..the odd pain..but do feel weak all the time..I havent been the same since i got this disease.

The hospital have been bringing me out for check ups and there is still signs of protein and blood pressure is still very high..

is there an end to this disease??it has left me traumatised.

I would be glad to hear from anyone who feels the same its great to talk to someone who knows what ya have been through..

Aine

1 like, 50 replies

50 Replies

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  • aimee82712
    aimee82712 Guest

    Posted

    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 

  • aimee82712
    aimee82712 Guest

    Posted

    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.

    • Guest
      Guest aimee82712

      Posted

      Just wondering how you are now?  Have you had a HSP diagnosis?  
  • Steph1609
    Steph1609 Guest

    Posted

    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 .

  • Guest
    Guest Guest

    Posted

    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.    
  • agatha35087
    agatha35087 Guest

    Posted

    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... 

  • DadinTX
    DadinTX Guest

    Posted

    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.

    • Guest
      Guest DadinTX

      Posted

      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?   

  • donna_jhea2500
    donna_jhea2500 Guest

    Posted

    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

    • Guest
      Guest donna_jhea2500

      Posted

      Hello donna jhea,  may I ask which country you are from?  I read your post and am so sorry but you will need to ask a medic about the recurrence of HSP, I would think there must be statistics kept internationally as it happens to all populations.  I would think the answer will be yes, if your body faced another virus or as you say, you became very rundown again due to low haemoglobin, and arthritis is an inflammatory response, and the immune system has overreacted before, causing the vasculitis which HSP is, then yes that may very well happen again.  But I am not medical so this is just a common sense response.  My daughter was 8yrs when she had her episode and is now 13years and has not had an HSP recurrence, but she has failed to recover full health.  She has endless nausea, fatigue, headaches , sleep difficulties, possibly reactions to her adrenal system  and sinus post nasal drip.  It is such that she cannot attend more than part-time school and has to rest all the time. There are so many people with strange mixed symptoms that don't fit known biological markers but we all know that something is not right.  The ME/CFS forums are helpful as people there have faced the same lack of medical understanding for their debilitating symptoms.  I hope someone else on this forum can perhaps answer you more fully.  Don't give up asking doctors and seeking second opinions - some in the UK say that rheumatology is a very good place to ask about other symptoms as they are where a lot of rare conditions are recognised.       

    • donna_jhea2500
      donna_jhea2500 Guest

      Posted

      Hello...

      Thank u for ur response

      Im from philippines..here in the philippines i am the first and only one who diagnosed hsp that time ..if im not mistaken it was year 1991.

      Ive been consulted my dr..once a month but hes not my dr since ive got hsp..becoz the hospital is closed now and my doctor there got migrate in us..i dont have any files to show..so my doctor now,,suggest us to undergo many laboratories exam..so they will find out..but they told me that based on my experienced and the symptoms ive encountered now and based on their studies,they think it will attack again

  • donna_jhea2500
    donna_jhea2500 Guest

    Posted

    Hello...

    Thank u for ur response

    Im from philippines..here in the philippines i am the first and only one who diagnosed hsp that time ..if im not mistaken it was year 1991.

    Ive been consulted my dr..once a month but hes not my dr since ive got hsp..becoz the hospital is closed now and my doctor there got migrate in us..i dont have any files to show..so my doctor now,,suggest us to undergo many laboratories exam..so they will find out..but they told me that based on my experienced and the symptoms ive encountered now and based on their studies,they think it will attack again

  • mia09377
    mia09377 Guest

    Posted

    hello ive got hsp im 16 ive had it for 9 months now do you have any idea when it will go?

  • mia09377
    mia09377 Guest

    Posted

    ive had hsp for 10 months now and the rash is really getting me down any ideas on how to calm down the rash or any ideas how to hide it im 16 year old female can people who have suffered from this tell me how to cope with it and there experience also how long does it last as im very self contiouse of the rash

  • agatha35087
    agatha35087 Guest

    Posted

    Dear Everyone... how are you all?

    I posted 2 years ago... though doctor did mentioned is better stop conceiving after the HSP (I had my 1st born before I have HSP) but I was pregnant again in year 2018. Baby was born healthy and I am very glad... but everyday I am still worried that she might have the HSP since doctor mentioned it in my DNA since then... she is now 17 months old, and whenever she cried hard, i can see her face has broken blood vein spot... and i also notice she will get 2 or 3 red spot here and there from time to time... can anyone of u share with me if you have any experience with baby or toddler that carry HSP?

    I try not to think too much or was i being paranoid... so far she is doing alright, healthy and chubby little baby... 😃

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