23 yr old with HSP

• By barbwoldin
• Posted May 13, 2008 at 9:06 am

cmere58:

Have you been on the ectodermal hyperplasia website? They may be able to help.

http://www.nfed.org/

Barbara

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• By Gaff
• Posted May 15, 2008 at 4:57 am

Hi

I am a 35 year old woman and have been diagnosed with HSP this year along with Diabetes type 2 ( which i am told is not linked in any way!).

I suffer with a pupuric rash which is as per the photos you sent of your son but fortunately mine is not yet as vicious. However, the rash, swelling of my ankles, wrists, stomach and upper abdomen pains are as described by yourself.

I have been given a Autoimmune suppressent by the hospital, in one week I have had only 1 attack of the rash and not had the stomach pains or much of the swelling. However, I did experience bad stomach upsets last week and the dr confirmed it could have been the tablets.

As I understand HSP is a reaction to something in your system, could be food, insect bites, medication etc... i have been keeping a food diary and found that dairy, alcohol and some fish cause me to have a bad reaction. I also find that when my monthly cycle is due the rash goes fpr a few days ( it does leave orange scars on my legs and arms though).

I would love to hear from people with this condition, to seek advise and see if there is anything else we can do to help with this horrible disease.

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• By camae
• Posted May 19, 2008 at 8:26 pm

I've posted this in a few other places I think it helps to gain an understanding of what the outward physical symptoms can look like

I tried posting photo's of Mik's condition before but couldn't figure out how to do it . I hope this link works.

http://cmere58.winkflash.com

I've set this up so it should be public. I'm still hoping to hear from an
other adult who has experienced this deisease and would like to share their story.

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• By SCOTLAND
• Posted June 1, 2008 at 3:59 am

I am a 43 year-old female that has had this condition for the last 3 years, as soon as a purpuric rash appeared I was admitted to a renal ward for over a week, during that time I had a biopsy that determined my condition, I was then given a chemo type drug in tablet form ( for 3 months ) and high dose of prednisilone, water tablets to reduce swelling, cholesterol lowering meds and meds for high blood pressure to reduce bleeding from the kidneys,I am still on all meds except chemo, they are currently trying to wean me off prednisilone ( again ) now down to 4mg daily lowest i've been in 3 years, but swelling getting more noticible and joint pain getting worse, the chemo caused me to go into early menopause, and the steroids to start having treatment for osteoporosis, great eh !. But saying that the meds stopped me from being nephrotic and have never had a rash since I was first diagnosed, I have a brilliant team of specialists that i have to see regularly for bloods etc.. and being Scotland its all on the national health thank goodness.I just hope i am not coming out of remission as, after gaining 3 stone in weight i've recently managed to lose 1 stone and would hate to go back to high dose steroids.I too have not worked since diagnosis, my body feels weaker and sorer if i do too much, now and again i get a really good week when i feel normal.My own doctors don't really know much about this condition I find myself having to explain things to them all the time, whenever i get ill i.e. chest infections etc it takes a long time to recover and usually have to up steroids again. I hope all this helps you.

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• By camae
• Posted June 2, 2008 at 7:02 am

Scotland thank you so much for your response. It's interesting to hear in these responses the different approaches taken for treatment. Here in Illinois every Dr. we've met has been very conservative in their treatment approach. In and out of hospital we have met with dozens of Dr's but only one who had ever treated HSP before. That Dr was a lot more aggressive with the Prednisone than the others were but by then my son wasn't responding to the Prednisone orally or intravenously.

His Purpuric rash has been present from the beginning, and he is always in pain. I wonder why none of the Dr's he's seen have mentioned this Chemo type of treatment, if it is helpful I'd hate to think it isn't being offered because he has no insurance. I think your Dr's are much more aggressive in their approach even though I asked about taking a biopsy I couldn't find a Dr who agreed until more than a year had passed and he was in hospital at that time so I guess it was harder to ignore me. The disappointing thing was that the results of that biopsy seem to have been lost. a nice cut and twelve stitches for nothing.

I am sorry to hear how it has gone for you but I have to admit you are the first older long term sufferer of HSP that has shared symptoms similar to my sons, with the exception of the purpura. It is in a weird way good for me to talk with you and hear what you have gone through. It seems this is a disease that can take varying turns being mild at times and rough at others and your right about always having to explain things all the time.

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• By Wire
• Posted June 3, 2008 at 11:51 pm

Hi, I am shortly to hit 49 yrs old and I have been sick with HSP since I was 38. I had a flu like viral infection and shortly there after started to develop red spots on my feet and lower legs. The doctor said it was nothing and would go away in a month or two. The spots became worse and literally covered me from head to toe. I made several trips to the hospital with severe purpura, abdominal and testicular pain which nobody could diagnose. I went several years and through a half a dozen specialists before being diagnosed with HSP. Even with the purpura and blood and protein in my urine one specialist said I was fine and not to worry about it.
I have kidney involvment, arthritic and abdominal pain and take Colchicine which acts as a immune suppresent. I now have virtually no purpura and only occasional arthritic pain and with the addition of avapro the kidneys have stabalized, non or very little blood or protein in my urine. I have also taken Dapsone and Sulphasalizine with good results other than minor allergic reactions to these. I still have good and bad days with aches and pain but I am able to work and carry on a normal life. I have been told that unlike children who usually only have this for a couple of months, in adults it is a permanent condition.
Unfortunately there seems to be no information available reguarding HSP in adults. All the information that I have found pertains to HSP in children. Adult cases seem to be a rarity from what I can see.
What medication is your son taking? If it is not one of the ones that I listed it might be worth mentioning them to your sons doctor. I hope this information is useful to you and your son.

Good luck
Wire

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• By Stefputkowski
• Posted June 4, 2008 at 9:05 am

Dear CAMAE:

There is a very good patient resource group called the Vasculitis Foundation-- http://www.vasculitisfoundation.org. They provide information about Henoch-Schonlein Purpura. If you go to their "support" page, you can check for contact info for others in your vicinity.

Stefanie Putkowski, RN
NORD

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• By camae
• Posted June 9, 2008 at 6:53 am

Wire I"m shocked you've had it so long! I think your story illustrates why there is a need for long term studies of people who are currently ill and follow-ups for those previously ill. The lack of such info is what we're battling with SSDI in getting my son assistance. He doesn't even qualify for Medicaid without being judged Disabled by them.

Lately for some reason his shoulders and hips are feeling the brunt of it all. He needs help even bathing and dressing. I hate seeing him like this yet it's been this way for almost two years now.

Stephanie thank you for that info :)

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• By SCOTLAND
• Posted June 10, 2008 at 4:33 pm

Camae, I really feel for your son, it must be really difficult living with this illness at such a young age.I too am experiencing shoulders, arms, knees, back and hip pain, some days worse than others, but not as bad as your son's,I find gentle swimming helps to build up the muscle, nothing too energetic though or he will feel worse. I am shocked at the biopsy thing as i had no stitches at all, they did have to do a second biopsy 2 days later as they didn't get a good enough sample first time,I was told mine was very aggressive and that is why i was put on cyclophosphomide (chemo) There were also a couple of younger ones on the ward getting the same meds.When i read all these stories it makes me grateful for the medical team that i have,they are truly fantastic, and are specialists in this field.

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• By bleedingsoul
• Posted June 25, 2008 at 7:07 pm

i was diagnosed with HSP 2 years ago and have been battling with it since then. i went to seek medical advises from different doctors after another but nobody could ever give me a reason why it is happening. it all started with a skin rash followed by severe stomach pain...i went to a Singapore Skin center and had a second opinion with the doctor. They took a sample of my rash through skin biopsy, urine tests and blood tests... The results were okay except for that HSP confirmation. The doctor gave me Prednisone for 2 weeks and Colchicine to maintain. The medicines helped to fade the rashes on my legs away...But it never stopped. Working as a manager for two companies isnt that stress free, and so i thought stress could be one of the reasons why skin rashes appear.

I did try see different doctors on my own thinking that there could be a different technique how to handle this rare disease. But they all gave me the same results. I was living alone for the past years and i really had no one to share my dilemma with. i work the whole day and go home alone and no friends to keep in touch with well i mean physically where i can confide to everyday. i do see my mom and my sisters through video cam and phone, but i couldnt even share with them my problem,because i dont wanna worry them. and so yeah,i decided to go back home to my country and seek another doctor's advice. i went for endoscopy as per advice.

when i was taking colchicine and prednisone,i had all the side effects celebrating in my body. sometimes id wake up at night and lose my breathe. i wanted to call for help but before i do i realize that yeah i am alone. before i realize to cry,tears are already falling down on my cheek. that was a couple of weeks on the onset of the rashes and when i started seeing the doctors. but after a couple of months, i had accepted my fate. i couldnt be any sadder. but i was getting financially sadder and worse emtionally drained.

moving on.
the hsp rashes or whatever it is kept going on and on appearing after another. i couldnt sleep at night without my bible beside me and every morning i make it sure that it is there. i see myself at the mirror and alot of things has changed; my face is bloated and hairs are falling off..but u know that when u have this sickness and the people that could help u (doctors) are the ones telling u that there is no certain cure for it?...it could just make me smile.i couldnt be any sadder with life..i just keep looking on the brighter side of it. after all life is life. we cant change some things. we just have to live with it. =)

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• By fillyhill
• Posted July 20, 2008 at 12:34 am

I am 57 years old, and became sick with HSP about 5 years ago.

I broke out up to my waist pretty solid, and ended up with a bad ulcer on my leg in which I could have lost my leg, except that I went too a plastic surgeon that help me to get it healed up, as it was very bad.

I was on a lot of different immune suppressant drugs, most of which I became very allergic to. I ended up on celsap and prednasone. The prednasone helped so much with the joint pain, and I wished that I could still be on it.

I am a dog groomer and did quit working, for 6 months, during the time that I was trying to get my leg healed up. My business is our main support and I have to work. Although, I can tell you that I have my days that I just want to pull the covers over my head and sleep all day.

I have gone months in which I think it is gone, but when I start thinking that, I start pushing myself, and it shows its ugly face again, and the joint pain comes back, so much that even my toes hurt, and I just feel sick all over.

It is hard to get my doctor to understand how I feel, seeings as it is a rare disease, especially in adults. He has only seen it a few times, and I am the oldest.

Other people look at me thinking that I look fine, and healthy, and I am feeling just awful. I am no longer on medication and want so badly to get on with my life, and ride my horse and work hard if I want to, and play hard if I want to and not feel like I am a downer to my husband.

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• By JRD
• Posted July 20, 2008 at 12:50 am

Do you believe in alternative medicine? I know of herbal products whish do wonders to patients who already lost hope. Many testimonies have been made by people who have recovered from dreaded diseases like this.

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• By jimsmom
• Posted July 20, 2008 at 10:06 am

Camae,
I don't have HSP, but my soon to be 16 yr old son does.He was diagnosed in 2005 after a bad bicycle accident that caused a deep bruise to his sternum. We have been battling a flare since last August. While my sons rash isn't nearly as severe as Mik's, I understand your frustration. Through pure strength of will, we finally received some decent news just this week. As Stephanie said above, contact the Vasculitus Foundation in Kansas City. They have some wonderful people working there, and arranged for my son to be seen by a Dr Abdou, in Kansas City,MO, one of their medical consultants and a rhuematologist that specializes in immunology and allergy. After visiting with him this week, I am convinced that is the type doctor to be seeing. We traveled 650 miles one way for this appointment. I was at my wits end because my son is allergic to colchicine and azthroprine (sp?). He is currently on 2000 mg of cellcept daily and his rash and joint pain have diminished greatly. Not gone away completely but enough so that his legs look way better and his joint pain is about a 2 on the 1-10 scale.Dr Abdou knows our doctor at the Childrens Hospital in Denver and will work with him to put my son on a more aggressive form of treatment. What that entails, I don't know yet, But for Dr Abdou to do this for us means everything to me.
Again, I urge you and anyone else out there with these strange types of vasculitus to contact the Vasculitus Foundation. They are a wonderful group of people with alot of knowledge about our disease and can find us help in our area. They are a worldwide foundation andhave many resources, doctors etc available to them.
God Bless and take care
Cindy

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• By camae
• Posted July 23, 2008 at 4:00 am

All of the replies have been overwhelming hearing about all your experiences and treatments and your ages has been eye opening. I had been led to believe that there wasn't much out there by the Dr's who have treated my son . Maybe they did that because he has no Insurance. I've been away from the computer for a while now dealing with secondary problems. After all this time of being sick Mik has lost so much that he has developed extreme anger, depression and anxiety and I've had to help him find a Psychiatrist who would treat him considering the HSP. Apparently some Meds can increase the bleeding. He's more stable now but this disease has cost him so much, his friends no longer come to visit, and there's so little he can do. I keep praying for SSDI to come through so he can get Medicaid and be seen by some specialists.

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• By Hjohn73
• Posted July 24, 2008 at 10:58 am

I am so sorry for what you and your son are going through as well. You responded to the entry I posted about my daughter. I cannot imagine what the 2 of you are going through. Our system is a mess. It is set up great for people who want to live off the system. If you are someone who just needs a little help, good luck. It makes me sad to see how many people fall through the cracks because they don't fit into a certain category. I will keep you in my prayers.

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