I am 23(at the end of this month-November)year old female from waterford,ireland.I was one of the rare unlucky ones to get Henoch Scheinlein purpura,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..
Since My HSP I have bein getting tremendous amounts of UTI Infections.
I actually think that I am going mental form these recurring UTI'S.
Since Childhood I have always prone to kidney infections,i used get one at least twice a year.
Since that HSP has cleared up(for now) I have gotten so many UTIs!!
I also have very high blood pressure resulting from henoch scheinlein purpura and am currently taking medication for this(Isten and low centryl k tabs..
My concern is the sudden overload of UTI'S ,the space between one UTI and another used to be months...but since HSP especially the last two months Ive had 6 UTI'S!!!!(ive tried every anti biotic under the sun,none have worked the last 3mnths..have i become immune to anti biotics through the years????):(
I also suffer from frequent joint pain,get very tired and weak if I walk just a normal distance...
Ive been hospitalised 2 week ago as the pain came to a stage that was so unberable i thought my back would explode and I get this awful ''need to push feeling'' along with a ''fullness'' that just wont quit!!!
I am out of hospital two weeks now and returned to the doctor yesterday to be told I have ANOTHER uti!!!!The doctor gave me more anti biotics, and i have refused to even get them!!what is the point!!:mad:
I am currently also taking Macrodantin 100mg each night,this is a preventer of getting so many UTI'S but it doesnt seem to be working!
I have had a ultrasound scan,thankfully nothing was found but at the same time I have no closure!-Im waiting upon getting examined by a camera been inserted in my bladder to check out if anything is wrong-im waiting for this scan for months as there is waitin list
In the meantime I just have to bair the UTI's,all I've been told is that their is numerous infection present that anti biotics cant seem to kill :(
What Im trying to find out is that has Henoch scheinlein purpura brought on these recurrent UTI's or was it the UTI's all through the years threatning Henoch scheinlein purpura.....
Im very concerned as when i read up on Henoch scheinlein purpura it states the big concern is the kidney involvement,but it is rare.maybe i am one of the unlucky ones?????
anything from anyone who suffers from recurrent UTI'S or Henoch scheinlein Purpura would be much appreciated, would love to get in contact with either, it seems like im all alone in this
If you are reading this and suffer from Either I realy hope u recover soon and better still...FOR GOOD!