Discussions By Condition: Rare Disases

Anyone who has or had henoch scheinlein Purpura would realy like to get in contact!!!

Posted In: Rare Disases 8 Replies
  • Posted By: aineysmurfy
  • November 10, 2007
  • 06:20 PM

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!

Áine M.:confused:

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8 Replies:

  • My son had the exact same problem when about 5 years ago. Then, about two years ago he developed something that was named "cyclic vomiting syndrome", for which he landed in the hospital every two to three weeks, on i.v.'s for 8-10 hours each time. The diagnosis, to me, was ridiculously ambiguous, and the doctors not helpful, so I decided to look into it on my own.I eventually ended up at a medical doctor in Cleveland, Ohio named Derrick Lonsdale, who tested my son and determined he had a severe thiamine deficiency, and was insulin resistant. The thiamine issue was likely a transporter issue within the tissues, so vitamin B1 or thiamine would not be the answer in and of itself.We now do not eat any processed food because of the chemical additives and high fructose corn syrup, which likely set off the insulin resistance. He takes these supplements: allithiamine, a high dose multi vitamin, vitamin e and something called "GLA Forte". He also had developed an overgrowth of systemic yeast, so we are treating him with nystatin and diflucan for about three months with those products.By the way, it is possible that the remnants of HSP remained in his gut, but he has not vomited in about 8 months and I am really confident we got to the core of the problem that needed to be treated.You can look up Dr. Lonsdale at prevmedgroup.com, or google his name and find all of the articles he has written on similar dysautonomias.Good Luck and feel better!!
    Wammer 1 Replies
    • January 15, 2008
    • 00:23 AM
    • 0
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  • I have HSP as well..
    Anonymous 42789 Replies Flag this Response
  • Hello Áine, I see it's been a few months since this was posted. I hope things are looking better for you. I was only 4 years old when I had an extremely severe case of HSP. Since I was so young I don't remember much of it at all, from the stories my mother tells me it sounds like its a good think that I don't remember. After several weeks of being sent from doctor to doctor I was finally diagnosed with HSP. My mother was referred to a specialist in California, so we packed the essentials and moved there. I spent the next year in and out of the hospital. Doctors had used experimental treatments on me in hopes to get me in remission. I went through weekly chemotherapy treatments, several kidney biopsy's, and was kept on steroids (Prednisone). Eventually went into remission. Doctors say if the extreme treatment didn't work I would have needed Kidney Dialysis by the age of 10. Since then I have been very prone to UTI's. General UTI's are treated with a week or so worth antibiotic, but with me the UTI would just come right back once I finished the antibiotic. I am now kept on a low dose of antibiotic, which seems to be working for me. If you would like any more information let me know, I'm happy to help as much as I can. -Colleen.
    CDarcy 1 Replies Flag this Response
  • Hi Aine and everyone, I'm living in Vietnam, a coutry quite far from you.Thank to internet I know this forum and the topic you are discussing is really what happened with my sisiter who is 36 yearl old now. My sister is suffering horrible pain in her ankle, rash. Doctor also said that is HSP and give her high dose of antibiotic to cure the imflamatory which has deepened in her muscle but it seems not yet effect at all. We are so worried. Could you kindly inform us how the Doc in US give you the dose. I read your writing and see that this diese may due to the defficency of Vitamins such as B1 then I ask her to get some medicament of B1, C addtionally. Doc in Vietnam seems unexperienced in curing this diese, pls help us urgent by advising how your Doc treat this diese? By which medicament and at which dose. I thank you so much and looking for your feedback! Patient in Vietnam
    nguyenthuha 2 Replies Flag this Response
  • Hi Aine and everyone, I'm living in Vietnam, a coutry quite far from you.Thank to internet I know this forum and the topic you are discussing is really what happened with my sisiter who is 36 yearl old now. My sister is suffering horrible pain in her ankle, rash. Doctor also said that is HSP and give her high dose of antibiotic to cure the imflamatory which has deepened in her muscle but it seems not yet effect at all. We are so worried. Could you kindly inform us how the Doc in US give you the dose. I read your writing and see that this diese may due to the defficency of Vitamins such as B1 then I ask her to get some medicament of B1, C addtionally. Doc in Vietnam seems unexperienced in curing this diese, pls help us urgent by advising how your Doc treat this diese? By which medicament and at which dose. I thank you so much and looking for your feedback! Patient in Vietnam
    nguyenthuha 2 Replies Flag this Response
  • Hi, I am 59 years old and have had HSP for two years now and it is getting worse. The UTI infections which have plagued me since I was 6 years old bother me very little now. Just the opposite of your case. Good luck.
    Anonymous 4 Replies
    • October 4, 2008
    • 11:49 PM
    • 0
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  • I have had two attacks of hsp. THe first five years ago on a saturday morning I noticed a red rash on my arms that was tingling and spreading very fast.I looked at my stomach and saw the rash there as well and spreading.I went to the emergency room at the general hospital in my town.THe doctor on call there had seen this type of rash before and injected me with steriods and antibotices. I was sent home and the bursting of blood capileries continuted throught out the night.However i did not develop any of the other side affects associated with the HSP. I BELIVE THIS WAS DUE tO THE EARY USE OF STERIODS AND ANTIBOTICES AT THE HOSPITAL.Very important.The second time was a month ago this attact was not as server as tha first with the rash however My personal doctor did not wish to treat the HSP with steriods and antibotices. I do not think he knew what the diesese was.so i did have bleeding from the bowel and pain in the elbows and angles very painful. as well as swelling of the Knees.Right now iam seeking help from a professinol who knows HSP,AND PLANING A COURSE OF ACTION IF I GET ANOTHER ATTACK. THE PRESENT ONE STILL LINGERS.I belive that the faster you can get steriods and antibotices once the rash appeers the less the affects of HSP.So find a doctor that knows HSP and is willing to treat you as soon as the rash appears. THat is my plan anyway.good luck
    Anonymous 42789 Replies Flag this Response
  • I have HSP. First time rash appeared, I was about 8 - lots of outpatient care. Then at 18, serious bout - hospitalized for 10 days. Rash, abdominal pain, throat/neck pain, inflamed joints, etc. Had to withdraw from college for the year (It began in October) and unable to work until February. Dr told me that it also affects your immune system, and I would be very likely to get sick often as antibodies build up again. Since then, 2 more much milder bouts. All supposedly brought on by . . . . .allergic reaction to aspirin, and antibiotics (penicillin, ceclor, biaxin, cipro, etc)
    Anonymous 42789 Replies Flag this Response
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