any other adult females with HSP??? pls reply

Hi,

I'm a 26 year old female with what is probably HSP - the closest I've got to a diagnosis is a rheumatologoist saying 'it looks like a HSP type vasculitis'. I thought I'd share my experiences so far.

I first noticed the rash on my legs in Oct 2010 and its appearance conincided with me having a cold. I went to the GP several times over the next few months but was met with much disinterest. One of the doctors told me to wear trousers if I didn't like the rash! The rash came and went repeatedly but I had no other symptoms. I felt silly continuing to go to the doctor so I put up with the rash and just hid my legs.

Several months later I had visible blood in my urine and returned to the doctor. They did blood and urine tests and this time referred me to a nephrologist. I had blood and protein in my urine but all my others test results were normal. When I went to the nephrologist the rash wasn't present and although I took photos the doctor wasn't very interested in connecting the two. I was told to have six monthly blood/urine tests and only go back to the kidney people if my tests were outside a particular range.

Over the next six months the rash continued to come and go but it never went beyond my legs. It was made worse by alcohol. Then it started to get less obvious and eventually stopped about 18 months after it started. I thought that was the end and I remained rash free for about a year.

But now it is back.

The rash returned in mid January and I suspect was bought on by stress (I had a bad few weeks moving house and facing redundancy). This time it was much worse, in amount, size and appearance, and I had abdominal pain too. Then my ankles got swollen and I could barely walk. I had a skin biopsy done but it didn't show anything useful.

The rash continued to get worse and new flare ups were caused by any exertion (even going up a flight of stairs). The rash spread to my arms and hands and because I wasn't achieving much at the GP I took myself to A&E. I was admitted to a ward and had tests done. Again, apart from the blood and protein in the urine, everything was normal. However, the amount of blood and protein in my urine had increased. They put me on 40mg prednisolone to try and get the rash under control. By chance the consultant on call was a rheumatologist and I got an appointment with him for two weeks later.

The steroids did initially seem to reduce new flare ups of the rash although they did not stop it. I'm reducing the dose by 5mg a week and the rash seems to be ramping up again now I am on 30mg. Unfortunately I have a two month wait until my next appointment and I'm really worried I'll soon be covered in the rash again. My legs are easy to hide but my arms and hands are causing a problem and I'm dreading the rash spreading to my face.

I am able to control my abdominal pain by not drinking alcohol and I don't have any other symptoms so I know I am in a far better state than a lot of other people. But it is horrible not having a definitive answer and not knowing when/if I will get better. I was active before this flare up but now do as little as possible so as to reduce rash flare ups.

Has anyone else experienced steroids not doing much? The rheumatologist seemed surprised they were having so little effect.

I've read several comments on how HSP might be linked to the contraceptive pill. I've been on one or another since I was about 17 and am wondering if changing it last October could have led to this new flare. I'm doubtful because of the three months in between but maybe hormores take that long to settle? I will be asking my GP for details on when I changed between the different pills and see if I can find a link with the first occurance.

Any similar stories or advice on reducing the rash would be appreciated!

Katherine

Im a 37 yr old female with HSP, I was diagnosed in 2001, i had all the symptoms, severe doubled over abdominal pain, rash on my legs and arthritis in all my joints forcing me to use a cane for 6 months because the pain in my ankles and knees were so bad i couldnt put much weight on them. they diagnosed me with HSP after a kidney biopsies. because it affected my kidneys they had a kidney doc follow me to this day. its great to have a doctor that knows your case and the disease to treat you because im sick of having regular or all other doctors ask me what HSP is. I end up educating them on it and that doesnt help me out at all. After being severely sick with the kidney failure my disease became very aggressive so they put me on a 2 year chemo therapy treatment program. they did this because HSP is a severe cousin to Lupus, its the same symptoms so they treated it the way they would Lupus with Chemo. The treatment was so harsh on my body i quit Chemo after 4 months and i stopped taking the steriods too because it was affecting me so badly! i also was told to take fish oil for my kidneys which also has the benefit of giving you great levels in your cholesterol, my good cholesterol is 90 when the normal is 60 so the fish oil i still take. I have been told by all doctors that there isnt a cure and they only thing they can do is pain management thru the hospital with morphine.Thats to hard on my body so i smoke marijuana and that helps all my symptoms and its all natural verses the chemicals in pain meds. Ive had this disease for over ten years now and it was in remission for many years but my arthritis is still here on the cold days and recently ive been very sick since December and were doing all kinds of tests to see whats wrong, EGD, colonoscopy, blood work and its my hsp thats causing this sickness. its very disheartening to know this disease will always be with me and affect my daily life. Im disabled unable to work because of this. this is the first time ive found a group of adults that have this same disease and its great to be able to have peoples support that knwo my pain with this.

Hi my name is Debbie I am 33, I have been suffering from hsp since I was 8 months, when it 1st. Appeard the doctors did not no what it was this resulting in me being taken in to care for over a year I was returned with no apology. When I was 7 hsp returned the rash was all over my legs and the pain was that bad I couldn't walk and it had spread to my stomach is was hospitalised for two months. I have ever since came out in hsp every couple of years until 3 years ago it has been appearing every couple of weeks my stomach pains have been increasingly getting worse, the doctors and hospital have no explanation and to be honest they still don't no much about it and I feel I am not been taken seriously my biopsy results showd inflammation of the blood vessels but not conclusive I am back up to hospital this month, this condition has and still is causing a great deal of pain and embarrassment with the rashes I hope there is a cure for this. Thankyou for taking the time to read this and look faward to any feed back. Debbie x

I am 62, and was told I had hsp about 9 years ago. I had had a cold that I could not shake for a long period of time, than started hurting all over, and right after broke out all over my legs. My GP doctor didn't seem to know what it was, and I did research myself and figured that it was some kind of vasculitis and when to a dermatologist and got a biopsy, and he than sent me to an internist thinking himself that is was hsp, and he sent me to a Rheumatologist. I constant blood work, etc. and he put me on various suppressant drugs, most I was allergic to and got sick. He ended up having me on celcept and prednisone, The cellcept start marking me feel bad, so I went off of it too, than a little later was able to go off the prednisone too. I have had off lite breakouts for the last few years, although still have a lot of joint pain, leg swelling, and times of just not feeling well, until this last week when I broke out more than I had in a very long time. But than this is after I had had a very hard day that never seemed to end, and was sick the next day. I haven't seen a doctor in over 5 years for it, so have no idea where my kidneys, etc. stand right now, as when I was having trouble before, I did at time have blood and protein in my urine. I was hoping the hsp was going away, since it had been a while since having a breakouts, and was thinking maybe the arthritis problems was just old age, but I didn't have arthritis before all of this. Now every joint in my body hurts, and sometimes my feet hurt so much it is hard to walk. I am a dog groomer and work with horses, so it isn't like I am normally inactive. I love working with my horses.

So, about a month ago, I posted a summary of my wife's situation (in a different HSP thread) 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. I would encourage anyone with HSP to purchase a blood pressure test kit (very inexpensive) and test yourself often. Think twice about having children. If you do have children and are told in your third trimester that you have pre-esclempsia, be warned that this could be an HSP flare up.

So, about a month ago, I posted a summary of my wife's situation (in a different HSP thread) 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 prot

Well, I guess I should start out by saying that I'm a 38 year old American man. I was just diagnosed with what the doctors here call IgA Vasculitis. I'm really just hoping and praying for some kind of information about HSP/IgA vasculitis. I was diagnosed in mid October and was hospitilized for 5 days. I'm currently on Prednisone. This is my 2nd week on it. They also have me taking Gabapentin for the pain. It's not working. Does the pain ever get any better? I can hardly walk. I have ulcerated sores from my knees to the soles of my feet. I did have trace amounts of blood in my urine at the hospital. I don't know if there is any now that I am at home. The tiny red spots started over 6 weeks ago. How long can I expect this to take to heal completely? I am the sole provider for my family (married with 4 children!) Is there any treatment you have there that helps? Oh and on top of the HSP I also am a diabetic and have Hidradentis Suppurativa. And the steroids are making my blood glucose extremely high.

Oh and the doctors also have me taking Dapsone.

Hi everyone,

My name is bianca I'm 30yo live in QLD Australia 5 weeks ago I had key hole surgery to the knee surgery went well then about 4 days later I was sitting out with a friend having a couple of quiet drinks catching up to then wake up the next day with a rash waist down abdominal pain and swollen ankles, I at first thought I had an allergic reaction to perhaps the Anapestic still in system with the alcohol. Or that I was sitting on the grass the night before and I had a reaction to grass seed. Well 5 doctor visits later the diagnosed it as hsp I've had it 5 weeks now and it seems almost everything I do is triggering the rash and does not seem to be going anywhere in a hurry, my blood tests, urine tests ect come back clean so I should be somewhat thankful ,except the frustration of not many answers on how to treat this. Was really happy to see I wasn't alone on this when I stumbled across this sight read a lot of helpful information and are coming to terms that this could b a life change and something I need to learn to live with.

I was diagnosed around 2000 and im 39 years old now. This disease is really hard on the body, I have almost the same symptoms as you, my knees are so bad now from the Arthritis that i have to have them both replaced. Its frustrating because my primary  doctor doesnt know enough about this disease to really treat it. It seems they just treat the symptoms which ever is flaring at the time and my kidney doctor doesnt offer much relief on how to treat it. Instead of taking many different medications I smoke medical marijuana to help and it does alot. I also found relief with my diet I eat mostly Organic foods now and I feel alot healthier from that. I dont really excerise because of my knees but i do walk alot and do yoga. I also take fish oil and multi-vitamins I have since my diagnosis the fish oil is good for your kidneys and it raises your good cholesterol. I was diagnosed with IBS last year because I was having so much stomach pain but I really believe it was a flare up of my HSP but my doctors dont know enough about this disease to really diagnosis properly. Its frustrating because I dont get any real answers from them. what kind of medications are you taking now?  

Hey all, I've been following this discussion for almost 2 years now.  It's crazy how long this road has been with HSP.  In fact, just last week, I donated my kidney to my wife who has suffered from HSP related complications...she had reached total kidney failure.  Our Nephrology doctors at Yale, New Haven hospital have shown a strong understanding of HSP and it's related issues with the kidneys.  I would happily recommend them.  Otherwise, I did find this link here which is very informative on the topic of HSP and CFD: http://kidney.niddk.nih.gov/KUDiseases/pubs/HSP/

It's a startling statistic to head:  Up to 40 percent of adults with HSP will have CKD or kidney failure within 15 years after diagnosis.

Hey everyone... another HSP adult here! I'm 30y.o.,and have had this for over 3 years now. Will need a kidney transplant... took everything under the sun (prednisone, cellcept, rituximab, prograf) and even had a tonsilectomy. No luck. It seems that nfortunately there is no known cure... I wish we could all get together for testing and research, but since HSP ina dults is so rare, there does not seem to be much attention given to it.

hi, I was diagnosed with hsp when I was 9. It affected my legs and walking ability most as I became very reliant on crutches. I went to the doctors when I started getting a rash that I was later told was the same as meningitis. My doctor was enthrawled by it and even got one of the other doctors to come in and look at my condition (with my permission of course). I eneded up with artheitis in both my kness that ended my abition to become a professional femal rugby player as I couldn't stand up in the scrum without it collapsing the scrum. It turned my world upside down. My family had planned that I would join the Royal Navy as a CIS or engineer, but that became unpractical because of my inability to run. I am currently in my last year of high school, aged 16 and hsp still affects my everyday life. In comparison to some other people with bowl disease and liver disease, but everytime I sit on the floor, I have to ask for help up because my knees can't support me correctly. They click and you can hear the bones grinding together which is thourily cringy. I hope to become a professional chef, even if I do have to stand up a lot, it isn't nearly as hard on my knees as Rugby or the Royal Navy ever would be.

 

Hi,

Has anyone had plasmapheresis as a treatment for HSP? I've been doing my own research and, although there are limited papers on it, there are some fairly positive results (in small sample numbers). Some people had significant improvement in their symptoms immediately and some even stopped having symptoms all together (at least within the period of the trial follow up, which was about six years). I'm going to ask my doctor about it but am guessing I won't get anywhere as I am not in a critical condition.