Henoch Schonlein Purpura in Adults?

I have not been diagnosed with this but Ive been trying to figure out what I have for several years now. I have seen over 30 doctors with no results. I have not had the stomach pain but I have have bruise looking spots on front thighs joint pain in knees ankles and fingers and my hair falls out. Anyone else had hair loss?

Hi, I am also a patient of HSP and I have already been suffering from it for 8 years. As doctors do not have much to tell regarding this autoimmune disease, I myself tried to make observations about possible triggers of the rashes. I found that the rash got more serious and itchy on rainy and humid days. I am wondering if anyone has similar observation as mine?

I was diagnosed with HSP at the age of 15 and I have now had the condition for five years.

Still 5 years on I have flare ups of the rash and have had bad joints ever since, my kidneys are checked and are completely fine at the moment. I have learnt to control this condition very well , I know what I can and cant do at certain times with my body. The first treatment I had was acupuncture which was based on a immune boosting session I had three , one a month . My symptoms started disappearing very quickly , along side the acupuncture I was given a Chinese plant based drink which removed heat from the body . The hotter your body gets the more likely the blood vessels will burst. Exercise warms the body and pumps blood faster which results in the swollen ankles , knees ,elbows and wrists.

Diet has made the biggest difference in my health , any food which heats the body will trigger the symptoms such as alcohol , caffeine , ginger , chilli , sugar and the biggest problem being dairy. Autoimmune diseases all come back to the same thing.. stay clear of dairy products. If you have the time read the china study which goes into greater detail.

But my advice for this illness is to live a healthier lifestyle and really look into what you are eating .

Hi there! I'm Asian and I was diagnosed when I was 19 years old in college. It makes me feel better to get to read about people with the same condition as me and actually relate.

The first symptom I experienced was that I seemed to have cough that persisted for 2 weeks, after consulting a pulmonologist, I was diagnosed with asthma (Nov 2011). Then after a few months (Jan 2012), I had severe upper abdominal pains, had gone through an endoscopy and was diagnosed with GERD at the age of 19. By that time, I started to notice rashes on my lower limbs almost everyday. They started out as small spots and very few, but as time went, the numbers increased and they did not seem to stop from appearing even after a few months.

Bothered by it, I decided to consult an internist and had gone through so many test. I was even diagnosed with hyperthyroidism, but a second check at my hormones revealed that the imbalance resolved by itself. For some time, I started to feel much weaker, getting tired easier and just wanting to rest all the time. At first, I thought that was just how lazy felt (lol) but then I found out that I was experiencing fatigue caused by something that needs further research. Finally, I was referred to a dermatologist that specialized with abnormal skin rashes. She was keen on finding out what was causing my rashes, so she referred me to other doctors and prescribed me with prednisone, which I took for around a month or two, to ease the rashes and for the swelling joints.

On August 2012, I had a severe upper respiratory tract infection and had to rest for a week. Following the recovery, I resumed coming to class. When my class ended for that day, I started to feel weak. As I went home, I noticed that there were more and more rashes appearing, and that they seemed to be getting bigger with my legs starting to feel weaker and starting to feel pain with each step I took. By the time I got home, my lower extremities were almost completely covered with the painful rash. I called my friend who had vasculitis and joint pain, and asked her mother (who was a doctor) about pain meds. Even as I was sleeping, it was so painful so I had to take the celecoxib just to get some sleep.

The following day, I went to a rheumatologist. After an extensive history-taking, I was diagnosed with HSP. She advised that I stopped taking the meds (for the GERD, and also the prednisone) and just take celecoxib for the pain. I stopped taking all of the meds and have taken celecoxib only once. Since prognosis for HSP was good, she advised to keep a good disposition, follow a healthier diet and lessen activities that will put pressure on the lower extremities (ex, jogging, running, too much walking or standing). The tips have really helped, but the disease hasn't gone away as expected. It has been more than a year since the first appearance of the rashes, and it is becoming more and more difficult to control the appearance of the rashes, and specially the feeling of fatigue when the weather's bad.

For now, protein has been found in my urine in trace amounts and I am so afraid that it will persist more and would become worse. I find that eating beef makes the rashes appear more. I think that since beef is rich in immunoglobulins, they may have something to do with the body's reaction to it, hence the inflammation.

This disease is VERY frustrating, specially for someone who aims to become a physician. I am currently in medical school, and I try to keep a good disposition, balance studies, rest and eating healthy. For now, I think that this condition will be a great hurdle, but I believe will eventually be toppled and disappear.

For all the adults here who have HSP, let's not let it get the most out of our lives. I think that disposition plays a very big role in having a better prognosis. Don't let it stop you from doing what you want and love. If you start feeling tired, just rest a bit, keep in mind that you can manage it well and that this is not the worst.

Let's all hope for the best, live healthy lifestyles and keep a close look on our kidneys! Good luck to all of us!

So, about a month ago, I posted a summary of my wife's situation after she was admitted to the hospital and doctor's couldn't figure out exactly what was wrong. Long story short... she had been diagnosed with HSP about 8 years ago. There were clear signs of other consequences of the HSP such as protein in the urine,IGA deposits, etc. but none of this was ever brought to her attention. Signs began to appear as her blood pressure increased, headaches became common, dramatic weight loss occurred, and fatigue came on. This all began to make sense as doctors looked back at the old records from when she had HSP. From there, they determined that her kidney's were severely damaged and was diagnosed with end stage renal disease (aka Stage 4-5 Kidney Disease). They have already taken steps to get her on a transplant donation list and plan to perform the transplant sometime this year. I share this story in hopes that no one else has to go through this. It all could have been prevented/stalled had doctors done their due diligence and warned her of her very real danger of developed chronic kidney disease.

Hi, I'm a 21 year old female Uni student and have only just been diagnosed as HSP last month after having 5 different diagnoses in 2 days. Looking back through my medical history the doctors have determined I've suffered from this since I was 10 years old.

In my case it seems I suffer only lightly between each attack, for which I'm hospitalised, unable to drink, eat or move and in constant pain and being continuously sick. The doctors were unable to tell me much about it other than its caused by a little infection somewhere in my body to which my body fights back and then starts fighting itself and that it should go in a month, it's carrying on strongly and the rash is developing everyday. I was told if I got worse they would have to use the last resort they have, steroids.

On this discussion people have mentioned the contraceptive pills, I have been on several and the implant but none can be liked to causing a flare up of HSP in myself.

I have found Germaline with anaesthetic to help a lot with the rash, especially when it becomes itchy. I can see that I'm definitely not as bad as some of you lovely people and am sorry that we're all in this awful unknown.

I just hold my head up high and take it. If people stare at the rash, it's their issue not mine. If I'm asked what it is I'll tell. All my friends and family have been incredibly supportive, none having any issues with it at all and I feel incredibly lucky for it but I'd still like to know more about HSP.

DEBBIE B.

Hi all, my 20 year old daughter was diagnosed with HSP last November after suffering from a throat infection and was treated with antibiotics. It took 3 visits to the GP and 2 to A&E before it was finally diagnosed - we were concerned that she had meningitis and most relieved when told that it was not life threatening.

She had all of the symptoms decribed in the earlier blogs but by far the worst for her was the pain in her ankles and she was unable to walk and in a wheelchair for 6 weeks and had to have weekly blood tests to establish if her kidneys had been affected - all was clear for this thank goodness. Happily it did clear up after about 4 months and she has had several short term recurrances of the rash since but a couple of days ago the rash came back and is quite severe and she's got the stomach pains, headache, aches and pains and general tiredness to go with it.

Prior to her throat infection coming out and getting diagnosed with HSP she had been back and forth to the GP's with a series of minor aches and pains and general feeling of being unwell. We have been back to the GP's this week and he's precribed her some antihistamine liquid which is what he gave her when initially before she was diagnosed with HSP - not sure if he feels that she's over reacting or not!

She has the contraceptive implant and I'll mention to her the comments that I've seen in the earlier blogs about this.

Its good to see this forum as we had no idea what HSP was when she was diagnosed and so to know that others have had this experience is reassuring for us.

JILLIE M

Hi everyone!

May I just say how refreshing and great it feels to see other people going through the same thing and being able to help each other out! Obviously, I would not wish such a frustrating illness upon anyone, but it's nice to see that I'm not as alone as I first thought!

It's been around 18 months since I was diagnosed with HSP and still not clear of it. Like most of you, the rash was at its most severe 1-4 months into contracting this. I experienced intense stomach pains that made me vomit on and off for a month and a bit, with the only pain relief being paracetamol.

Since April 2013, I have had a kidney biopsy informing that while the functioning of them is of no concern, I have IgA Nephropathy and prescribed Ramipril & Simvastatins due to high blood pressure.

The rash has settled, and only tends to flare up in certain occasions (exercising, alcohol and eating certain foods) it is no way near as bad as when I was first ill. I still feel unwell at times, I get bad headaches and dizziness as well as abdominal pain that makes me nauseaous.

I was just wondering whether or not everyone suffers the same frustration as me when it comes to check ups with the Doctors. My Renal doctor seems to understand how i'm feeling and how frustrated I am when it comes to my disease and therefore sympathises me, along with my original GP, who is on maternity leave.

I've experienced other doctors whilst my GP is away and I cannot stand to go see them. Most of them are uneducated in the disease and therefore often tell me "HSP should only really last around 3-4 weeks", which has once resulted in me crying in the office because they aren't listening to my problems.

They make me feel like a spoilt child who is demanding for something unreasonable. When in reality, I just want some form of hope that in the end I will be alright. I have done endless amounts of research on it, because I often have nights where I become so fed up with being different that I feel like I must find some way to stop it.

Does anyone else suffer with IgA Nepropathy from HSP?

Zoe x

Shocked by hsp symptoms

I am a 45 yr old latina who was diagnosed with hsp about 18 months ago after a rash that cover my legs, feet , stomach, arms. Family doctor had no idea of what it was so he sends me to a dermatologist and after 3 skin biopsy, diagnosed me with hsp but did not gave me any information about the disease. She refers me to a rheumatologist who did not give me information either, he put me on prednisone and checked my kidney and there were o k. What I lean about the disease I did from the internet and this support group. I was in shock to learn how serious this disease was and all the symptoms that can occur. I had ankle and knee pain, abdominal pain, and this week I was in the emergency room with a horrible pain on my right side which they diagnosed as flank pain. They did a lot test but could not find the source of the pain. So they came to the conclusion that it was a flair up of the hsp. I see the rhemalogist this Tuesday hoping that the months that I was not checked, my kidneys did not get affected. I had no idea how serious this disease was and how much can affected your life.

Hi everyone,

I am Ramona from Romania and I am also a former HSP patient...fortunately I had the disease only once. I am shocked by many other posts especially because the doctors you saw couldn't diagnose you from the very beginning.

I had HSP when I was 15 years old after a respiratory infection. Now I am 30. I reached hospital with all possible HSP sympthoms. They put me on steroids...although they told me about the side effects. After 1 month in hospital I had an abdominal surgery because I accumulated blood and liquid inside my abdomen. After 3 months in hospital, I was completely recovered and I had never had HSP. I do a lot of sport and travel.

Although I took Prednisone for about 2 months, I don't have any health problems but some very insignificant arthritis...and I treat it by making sport. In fact, although I am not a doctor, I am convinced that many of you experience kidneys problems, hearth side effects, etc. because the HSP was not treated at all. I just can't imagine how you feel after having years and years this disease. For me it was the worst thing ever happened to me and I really hope it will never come back. And I was sick for 3 months!

My advice for those who still suffer from HSP is to seek for a good doctor, no matter how much it will take.Someone who has experience in treating HSP, who had many patients and know how to deal with the sympthoms. This disease is not a joke, it can in fact shorten your life.

Now my biggest concern about HSP is that I am pregnant in 20 weeks. I wonder....will the pregnancy be an immune shock for my body? Will my baby experience HSP? My doctors don't know the answer...

Thank you very much for your stories and I really hope that the scientist will find one day the treatment for everyone!

Ramona

Hi Everyone (and Zoe),

I was diagnosed with HSP in January of 2012. I had turned 27 a month before that. I am living in the US and thank G'd in a city with the best hospitals in the world. (Don't get too excited, they still don't know much about HSP!) for the weeks, maybe a a whole month, prior to my diagnosis I felt a lot of pain under one of my feet, then later under booth. My husband who happens to be a physician told me it could be Plantar Fasciitis but I thought it was weird because I am not a runner and don't jog. One day I realized there were some bruises on my legs and thought maybe I had shaved myself badly. But the next day there were more bruises... And my hand and elbow were swollen (couldnt wear a watch) as well as my ankles. My husband got worried and we went to see a doctor, who wasn't sure what it was, and sent us to a dermatologist who took a skin biopsy that confirmed HSP. I started with steroids right away because my ankles were terribly swollen and I couldn't move.. On top of other symptoms. I have 3 little kids and cant just lay down all day! I researched about HSP online and saw that everywhere it says that HSP goes away in a month (yeah, right). It took at least four months for me to start feeling normal and not having to wear only crocs. But HSP never completely went away. It comes and goes when it wants. Sometimes I wonder if stress may tigger it. At the beginning, my kidneys were not involved. But a month or six weeks after my diagnosis, I felt terrible stomach pain - worse than having a baby. Is though I was going to die. After suffering for two nights, I went ended up in the ER and CAT scan showed that my intestines were involved, and blood wasn't flowing in. I could lose my intestines like that. So I started IV steroids for a few days and it fixed the problem. BTW, I had a lot of arthritis on top of the regular symptoms and swollen ankles, bruises that ulcerated sometimes, etc. About three or four months after my diagnosis, I found out my kidneys were starting to show involvement... To make a whole story short, I suffered a lot. On and off steroids, caused me to ban and lose weight, which caused me gallstones and so I had my gallbladder removed (no need to say I was admitted back in the hospital with complications). I always had chronic tonsillitis, so two weeks after my diagnosis a reumatologist decided to take a throat sample and it was positive for strep, even though I felt nothing wrong. I had my tonsils removed three months or so after my diagnosis. Nothing changed, although some research says it can help the kidneys/HSP. My kidneys kept getting worse, slowly. In January of 2013, my nephrologist put me on a new trial treatment, a type of chemotherapy injections called Rituximab, for IGA Nephropaty. I had a few injections, but it didn't help with anything... So I continue with the steroids... Sometimes when protein level is like 9 grams, I am given IV steroids for a few days... Thank G'd my kidneys are still functioning, but the doctors can't tell what will be long term. I had two kidney biopsies so far, which showed inflammation and scarring... I started to take Cellcept (for the kidneys) in May 2013 (along with steroids) and it seems to be controlling the kidneys somewhat. I mean, the haven't gotten worse, and protenuria and hamaturia are "stable" ... The doctor said I will probably stop the steroids in a few months, but he'll keep me on the Cellcept for a few years. I take a lot of fish oil (for the kidneys) and medication to lower my blood pressure ( also for the kidneys) even though I blood pressure is already very low... Oh we'll. I hope this helps some of you out there, and I am so glad I found this forum! I am not the only one

I am sorry for writing without reviewing, but i havent got the time right now. Forgive any typing mistakes. Feel free to ask any questions I might be able to answer.

Wishing you all a speedy and full recovery.

Hi,

I posted back in April and wanted to give an update on my condition.

In February and March I had heavy rash over my arms, hands and legs, dreadfully swollen ankles and abdominal pain. I couldn’t walk up a flight of stairs without getting covered in a new rash. The 40mg prednisolone reduced the rash a bit and since then I have been able to do non-cardiac intensive exercise. I avoided alcohol for a few months and this stopped my abdominal pain.

Since April I have slowly come off prednisolone. My rash is generally now only on my legs but it is a bit worse than it was at high pred doses. However, the pred was giving me heart palpitations, making me gain weight and gave me a ‘moon face’. The last two were making me more self-conscious than the rash. I was also put on Azathioprine as an alternative to the pred. This had no apparent effect on my rash but made my hair fall out. After giving it a couple of months I eventually decided the hair loss was reaching a point where I couldn’t hide it anymore and because there had been no positive effects I came of the aza. Unfortunately, I am still experiencing hair loss two weeks after my last dose.

I gradually tested out small amounts of alcohol again and although it makes the rash worse I can have the occasional beer fairly safely. I do have some new symptoms though. I now have joint pain in both knees and in my hips. So far this has been manageable without painkillers and I am still active.

The combination of immunosuppressants and mini pill gave me quite severe acne so I have also come off the contraceptive pill. So far I have not noticed any benefit in terms of the HSP.

So currently I am on no treatment. I still have blood and protein in my urine so I am due to have a kidney biopsy in the next two months. I have badly ‘stained’ skin from when the rash was heavy but the rash is much better than it has been. My blood tests are still normal so I am a bit of a medical mystery to the doctors. I often get medical students coming to have a look at me! When I get reviewed in October I may be put on mycophenolate as an alternative to the aza.

For those currently going through a bad patch, stay strong! This disease goes in peaks and troughs and although far from cured I am much better than I was.

Katherine

Hi all,

My 21 year old daughter was diagnosed with this disease in April. Since then she has received no treatment but is being monitored every 5 weeks or so. The main features are a severe rash on her lower limbs and aches and pains in the legs. She has had a little abdominal upset but not much. She is unable to walk too far and standing for long periods is difficult. I have tried to research this condition and as far as I can see the advice is to hope it goes away and only treat with very strong drugs if the kidneys become involved. I have therefore become interested in alternative therapies. I have just read the book "The autoimmune epidemic' by Donna Jackson Nakazawa. This book suggests that many people have an unknown reaction to wheat which creates antibodies in their system which because their body tissues look very similar can be attacked along with wheat proteins. The book is very interesting and has a lot of other suggestions for improving the function of the immune system. I would be very interested to know if anyone has tried to heal themselves through diet and supplements and what success they have had.

Hi again

Just realised the book I quoted was my first read on the subject. The recovery plan I am interested in is discussed in this book:- The Immune System Recovery Plan, by Susan Blum. Has anyone read it or tried any of the suggestions?