Henoch Schonlein Purpura in Adults?

rashes on my arms and back of my neck appered in last week. little discomfort of my stomach also upset my thoughts. My doctor is curing for disturbed stomach.

Does my problem sounds like HSP???

Should I ask my doctor to diagnose HsP???

pls advice me.

It could well be. If you apply pressure to the rash and does it go away and do you have joint pains, if it doesn't go away and your joinAs an update to my condition even though it's been nearly 5 months since I left the hospital I'm still getting new additions to the rash almost every day, joint pain especially in my hips, my feet are swelling too and discomfort in my stomach. I've been put under 6 months observation that restarts everytime I get a new rash and if it continues I'll have to see the kidney specialist.

For some reason my doctor has decided that he has to test for STD's to see if that's the trigger. Even though I am definitely free any, he won't take me being clear for an answer. It's starting to get really degrading.

I've not had much information about my HSP other than what I've gained off here and my own research. My doctor doesn't know how to treat me he's just following the same guide he's been given for a 9 year old also under his care that's been diagnosed with HSP 2 months ago.

I was happy when I was finally given a diagnosis after 11years but for now there's really nothing that can be done.

Debbie

Hi all

Having trawled the net for useful information I wanted to alert you all to the following website:-

Igan.russgeorge.net

Russ George claims to have cured himself of IgA nephropathy which is another presentation of Henoch Schonlein Purpura by having a tonsillectomy. His website is packed with useful information.

I had Tonsillectomy - did not improve IgA Nephropathy ...

I had Tonsillectomy - did not improve IgA Nephropathy ...

Hi all,

I'm a 32 year old male from Sweden who was diagnosed with HSP in the spring of 2010. At first my doctor told me this was no big deal, a year of prednisolone treatment would help and I would be fine. After a few months my test results showed increased blood och protein in my urine so I was tranferede to a kidney specialist. My HSP was tearing my kidney down and as of today I'm at 30-45% of my normal kidneyfunction.

As a result of this my doctor increased my prednisolone which made me swallow like a ballon in my face. It also caused insomnia and fysical stress. Every day from that day my highest dream in the world has been to be able to stop taking prednisolone.

In the end of 2012 I found an interesting study from England saying that HSP with kidneydamage also can be treated with CellCept. I asked my doctor for this new medicine, but he was not willing to give it to me at first (it was not standard in Sweden) so I demanded it, saying I would stop eating the prednisolone anyway and that it was up to him. Finally I started on CellCept and was able to shift down on prednisolone from 40mg each day to 7.5 mg each day.

This has been all the different in the world to me! Sure, I'm still a bit swollowed in the face but the insomnia and the fysical stress has stopped! My testresults shows thesame now as when I was on the 40mg each day prednisolone! I can work again, I have no other symptoms of HSP!

For all of you out there with HSP without kidneyfailure - CellCept is probably not for you since its a medicine protecting organs. But for you who struggles with kidneyfailure and high dodes of steroids, I recommend you to talk to your doctor about this!

Sincerely,

Jerry

(pardon my English...)

I am a 26-year-old male from the USA. My experience with HSP began at age 24 in July 2012, just a couple months before turning 25. Here's a long-winded version of my account.

I woke up in the middle of the night on a Wednesday in mid-July with some mild abdominal pain. I had not been previously sick, on medication nor received a recent vaccination, but had recently moved into a new place of residence. Throughout the following work day I didn't drink any coffee since I'd had similar feeling stomach pain from too much in a single day, but as the day wore on the pain only intensified, then went away that night. I went to the local Urgent Care center that Saturday after staying up all night that Friday with re-emerging, persistent pain. The doctor drew some blood and called a couple hours later telling me to go to the ER for a CT Scan because he suspected appendicitis. I headed there to get a scan, the results showing inflammation in the small intestine, so they discharged me with a prescription for a couple different antibiotics and a painkiller.

Over the next week or so, the pain, along with my appetite, came and went on alternating days as I took the meds, and early signs of the rash began to show, but only scattered little red dots on my feet. I returned to the ER about 5 days later with more intense abdominal pain, mild nausea, and bumps around my elbows and ankles. They admitted me, gave me IV antibiotics, and discharged me a couple days later as my appetite returned, leading all involved to believe it was some sort of foodborne illness.

The day after I left the hospital for the second time, my body began to erupt in the rash. My feet and lower legs turned red and purple with hives-like spots and bumps, and red spots climbed from my elbows up to my wrists. Later in the night I had swelling in my testicles and it was painful to walk. The next day I woke up with no pain, but the rash persisted. Joint pain began the following day, and suddenly it was very difficult to walk up and down the stairs, and since I was given Cipro, I thought it was a side effect. The abdominal pain returned yet again late that night, so the following morning I returned to the hospital, where after all the blood tests, I was confirmed to have HSP. With a course of prednisone starting at 40mg, I was discharged for the final time as the rash began to subside.

For the rest of the summer I battled periodic flare-ups of the rash, swelling feet which forced me to go about my business wearing slippers, joint pain which made me walk with a limp, and the purple spots around my ankles began to blister, bleed and ooze, and getting to a lower prednisone dose led to another major flare-up in purple spots on my feet and arms, so I maintained 20mg daily. A followup appointment with a doctor affiliated with the hospital gave me some hydrocortisone cream, but the spots around my ankles continued to break leading to infected open sores. After more scripts for oral and topical antibiotics and a strict cleaning and wound dressing routine, I was referred to the wound care specialist at the hospital I had visited. I went to weekly debridement appointments from September until the very end of 2012 when my wounds had fully healed.

September saw my last instance of digestive issues. I never experienced pain after the initial hospital visits, but had stomach discomfort and appetite loss from time to time. Also in September I saw my family doctor who referred me to a rheumatologist for the blood and kidney tests. Each test showed results coming back normal. My 25th birthday was a happy one simply because I figured out there was a connection between alcohol/dehydration and rash flare-ups.

I began to wean off the prednisone throughout the fall and winter, experiencing bad anxiety, hair loss and terrible, embarrassing dandruff as my body readjusted. My final prednisone dose was late January of 2013. In late February of 2013 I came down with walking pneumonia, and with it, strangely, an end to the rash. After a course of antibiotics I was fine again and able to return to regular exercise and weight lifting without any sort of issues. Until the summer, when the very hot weather made for nasty scabbing purple spots on my legs and feet, which first looked and felt like mosquito bites. The lesions stopped after I moved out of the house I was staying in, but once again, I'd get the scattered rash. This revelation led me to believe the cause of the illness was a result of exposure to toxic mold, as I was living in an old house with a damp basement.

Which brings me to now. I still get the rash at times and the cause is far more ambiguous. My strength, appetite and weight have all been restored, I never have any joint issues, but I still get little red spots on my lower legs, feet and around my elbows. After a week of eating, drinking and being merry for Thanksgiving, I've found the alcohol/dehydration connection doesn't seem to hold true anymore, as I had another very small flareup last night, where I had no alcohol, spent the whole night drinking water, but was moving about and playing music.

So I feel watching diet is a very important thing to consider, as I did not eat very well last night, but so is your environment. For those still experiencing severe symptoms, your surroundings are something to consider, and yes it does get better. For those who say they have gotten over the illness completely I have to ask you, does the rash ever FULLY stop? The dermatologist I saw assured me it would, but could linger for up to a year after the worst of it is over, and I'm about at that point.

In the end I wish the initial Urgent Care doctor's hunch was correct, and that it was appendicitis. After a fairly routine surgical procedure, I would've been fine after a brief healing period. My thoughts and support go out to anyone who is or knows someone battling this hellish illness, especially to those who have experienced much worse long term effects. I wish you the best in your fight and if you would like to speak to me further, please feel free to message me.

Hey everyone

Thank god there is finally somewhere to talk about this condition, it is definitely reassuring to know I'm not the only one dealing with this. Like many of you have mentioned you can feel extremely alone when no oneseems to understand what you're going through.

After having had hsp twice as a child and told it would go away within 6 weeks I was so surprised to get a reoccurrence 9 years later after coming home from a 4 month trip in Canada. Having experienced hsp before I knew what it was and just hoped it would go away with time like it had before, however this was not the case as I suffered months of joint pain in my ankles and knees not to mention this terrible rash which did eventually spread all over my legs and stomach. I went to the doctors and explained my condition and was referred to a dermatologist, I had several blood tests and urine samples and they couldn't find anything wrong with me. They decided to do a skin biopsy which revealed I had a small vessel low grade vasculitis. I havebeen put on 20mg of predisolone and an immunosuppressant called dapsone. After months of tears and painful joints the rash disappeared almost straight away and I stopped getting pains in my ankles. I have been told to slowly reduce the steroids and although I am doing a lot better it worries me that the rash will come back after I'm off the meds. I am 19 years old now and the fear that the rash will develop again would be heartbreaking for me, for I spent months covering my legs after experiencing this all through the summer, I would struggle to walk for a long amount of time and even had to have 3 weeks off work because I couldn't stand for every long, the rash would just get worse and worse every time i did something a little toostrenuous. I am very active again now due to all my symptoms being cleared and so grateful to the dapsone for I was put on steroids a few months before and they didn't seem to be helping the rash or pain at all. I hope this helps anyone dealing with something similar! There is light at the end of the tunnel and I respect and sympathise with all of you because I know how terrible it is to live with, particularly how disheartening it is to think it's gone and have a reoccurrence again. Before I was put on medication I found that resting definitelyImproved the rash but I would start working again and it would come back. Especially with this condition you have to know you're limits and don't push yourself too much. It is devastating to read about all the stories and I sincerely hope there is a cure one day for this condition.

i am a 60 year old female diagnosed August 2013. I had bullous ( huge blisters) lesions on my legs leaving awful scars.

I was treated with Prednisolone & antibiotics. I am still suffering with extreme tiredness , arthritic ankles &

haematuria. Seeing dermatologist, nephrologist and considering rheumatologist!

I was just wondering if anyone else of my age is suffering with this?

I, like some in this forum am fashion conscious and was generally fit & well. It appears to be changing my life.

Hello , thank you that you shared your experiences. I did not read all the posts, because I read English pretty slowly. I am now a 26 year old male (I live in Finland) and I got the "first dots" of feet in November 2011.

They increased gradually and reached up to my face and palms in one month.

Christmas Eve 2011 , I was in the hospital because I felt bad and I was just full of red spots.

Spots were very much in the hands and feet, where they were spread out in part one.

I had to run before this in the hospital for almost ten times without success.

However, in January 2012, I was able to go to the "Skin and allergy hospital", where the diagnosis was confirmed to me Henoch Schönlein purpurea. Skin biopsy was taken from me and started immediately Prednisolone regimen ( 10x5mg = 50mg) . In normal hospital they were already found earlier analysis of blood and protein in the urine . Now, accurate readings were n.1,1g/day protein and blood in the urine dipstick + + + (highest level). However, the amount is so small that is not visible. Blood pressure was something like a 150/100. Also when the disease was at its worst, I was able to get plenty of petechiae, for example, beer, or from the cold.

With Prednisolone regimen helped to lower the level of protein - first 0.75 g/day and then 0.5g/day in a few months.

I read at that time , of course, a lot of the internet , because the disease was a strange and rare. I tried to self-administer a diets even though the doctor almost laughed at the idea .In the end, a few diets after I left my food out all of the milk protein ( casein ) . This and predisolon course (6 months) helped me to get rid of petechiae. Actually, petechiae disappeared almost in the middle of the curia, when I realized I left out of the dairy products.

However, nowdays I see very rarely as single red spots in my legs, for example, if I have slept a little bit / stressed. Also, the urine collection test ( every 6 months ), the amount of protein in the urine has remained approximately 0.5-0.6 g / day level. Blood pressure is around 125/60.

I believe that at the moment the disease is in remission, but it managed to cause me a mild IgA nephropathy..

I also believe that the emergence of Henoch Schonlein purpura is no just one cause, because it is the sum ofmany things. I have read that the body immune level is limited, and my opinion is that if it's a too burdened , it may be enough to go to a "failure mode ".

Before I got Henoch Schonlein purple, I had eaten and lived unhealthy(overseen a lot) for many years and I had a stressful work. Also for example I missed the dentist (bad teeth are the way bacteria into the bloodstream) . Since childhood I have had a large tonsils (linked to the body's immune system, killing bacteria). Tonsil also produce IgA , which is in communication with the disease. All of these are certainly common issues which have contributed least to my own situation negatively.

So what I want to tell you with this - is the fact that the lower the burden on the immune system is, the less it freaks out and acts against the self (immune system is simply too active). Example a number of HSPs outbreaks after the flu..

At the moment (2014 February), I feel very fine and I have found sport once again (which was my hobby at a younger age) and also I observe what I eat.

In conclusion; My tips to you "the fate of comrades":

-Take your teeth condition (no any holes or other problems).

-Eat well but healthly! (avoid prepared foods and unnecessary E-codes)

-Avoid milk protein in any food (allergens may of course be others, but this has worked well for myself. But yes, i can go sometimes to mcdonalds, but i order my burger without cheese )

-If the milk removal helps to you, eat calcium supplementation

-Magnesium supplement (good for the heart, kidneys and blood vessels)

-Vitamin D supplement (in sunny countries, the disease is almost unknown.

In wintertimes I'll take 100micrograms minimum)

-Eat a lot of fish oil where's lots of E-EPA (0.5-1g/day, effectively protects the kidneys)

-All sports! (Lowers blood pressure, and rebalance the body's immunity).

I read the forum sometimes so if someone have the specific questions, just ask.

Take care of yourself!

-Juha

Hi everyone,

I'm coming towards the end of 6 months doctors observation of my blood pressure and urine. My blood pressure seems to be holding steady at perfect for my age. However my doctor is concerned because every urine test shows Blood, Protein, leucocytes and White Blood Cells but with every lab test they can see no cause.

This means that I'm off to see the Kidney Specialists. I've researched but I can't find out what the tests will Involve, does anyone know what will happen??

As well as Kidney issues the pains in my joints are still here and increasing, my hip and shoulder joints especially. However I'm struggling with painkillers because I'm still scared of being sick again because of the negative association I have with it. this is because the hospital forced me to take the tablets even though I was being sick everytime I had tablets.

Does anyone have any suggestions as to how to combat this fear or if anyone else has the same issue now after having HSP??

I'm not being prescribed anything for my HSP, I never have been over the last 11 years and there are currently no plans for me to be put on any medication to my knowledge.

I hope that everyone else is feeling fine and beating off the HSP

Debz xx

HI Debbie, I am a qualified nurse & midwife with HSP for the last 6 months. I too have haematuria and I am

waiting to see nephrologist. My joints are very bad too. I had bullous lesions(blisters where veins erupted)

and they have left awful scars, am also seeing dermatologist!

You will need a kidney scan and specialist bloods, the key is monitoring so they will need to be repeated

regularly. I am assured that haematuria (blood in urine) is of low interest in HSP but does need evaluating.

Protein & BP are important and are a marker for kidney disease.

Do you still suffer from the awful fatigue? I do, its debilitating.

How old are you?

I hope you feel better soon.

Kind regards

Hi,

Thank you for the info, it's the most I've gotten since I left hospital and even that was just a printout from the webMD site given to me by a doctor I never saw again.

I've been tested once a month for the last 8 months on my BP and urine, so they are definitely monitoring me. So it must be my urine tests that they are concerned about, but they don't seem to communicate with me at all.

I do still suffer with fatigue and my joint and stomach pains seem to come and go with the fatigue, which lasts for weeks then I'll be OK for a few days and then it's back again. I can sleep for a good 8-10 hours and still need a nap for a few hours later in the day.

I'm now 22, diagnosed in June (at 21) while in hospital for 14 days at which time the realisation by the doctors was that in fact I have been suffering recurrences of HSP since I was 10, 5 of which hospitalised me for lengthy periods of time, and an unknown amount that I was able to carry on almost normally with.

I hope you feel better soon too.

Regards Debz x

Hello, my name is Mitch I am 42 years old and I have suffered illness for over 20 years. Every time I would get ill the symptoms would be different, from breathing problems, a heart attach, swollen joints, to menigitis symptoms, and the Dr's would always tell me it was something else. Then in oct 2013 I had got so ill, It started with a swollen leg, then flu like symptoms, but when I had blood like spots all over my body and began to vomit blood they admitted me for 26 days. At that time I had lost 40 pounds in just over a month and was dehydrated, because I was unable to keep food or water down for about 3 weeks. The Dr's told me it would go away and would only last about 4 to 6 weeks. I have been unable to work for over a year now, and some days are good and some I just have trouble getting out of bed. I am at a loss here because I can not afford to see a Dr. every time it acts up (which is like always) and every post I read does not sound like it goes away. I am at a loss here and just want a light at the end of my tunnel

Hi Zoe, I have HSP and IGA nephropathy.

I am 30 but was diagnosed with IGAN / HSP when I was 19, having the rash all over my body except my face and neck, hypertension and blood and protein in my urine. At the time, my main concern was the rash however I was just told to get my skin out in the sun or wear stockings and to focus on my kidneys. ( I wouldn't recommend this but I went on sun beds hoping this would help).

I was also on the contraceptive pill at the time. I was prescribed 10g omega fish oil capsules per day and 20mg LISINOPRIL. My blood pressure was controlled and my rash eventually went. When I was 22 I switched to the implanon implant which I remained on for 6 years and had no rash and 1 year ago stopped all medication and had my implant removed. Since then the blood and protein in my urine as well as frequent throat infections have returned however I only get a few patches of the rash on my hips and my blood pressure remains normal. I have also recently been diagnosed with Polycystic overy syndrome. 1 GP has suggested my auto immune system is a factor in the PCOS too?

Let me know if there is any more info you want and I hope your symptoms have improved

Kerry