DIET AND HENOCH-SCHONLEIN PUPURA - ANY VIEWS?

Hi, my 19 year old daughter has had a very severe case of HSP since last November and it is still active. So although she is taking high doses of steroids & immune suppressants, calcium tablets, omeprozole and pain killers they still cannot stop the HSP. Like you say the side effects are a nightmare and so debilitating. She is now waiting for a kidney biopsy so more pain and lying in bed. She had steroid cream for her rash but it was a waste of time as it only treats inflammation and the rash is bleeding under the skin. She eats as healthily as possible initially avoiding foods that were hard to digest as her bowel/intestines were full of the rash/ulcers. Also people have said to avoid alchohol and chocolate but no idea if that makes any difference. Hope you are not suffering too much - it is a horrible condition with very little info on it.

I take arnica pill to help reduce swelling

flar ups are caused by - booze, diary and E numbers. I have had to remove as much from my diet as possible in order to just keep the pain at bay. 

The rash has not disappeared yet but I've only had this for three weeks I'm still under tests. But it's does change according to what I have had depending on what it looks like and how bad it is. 

Do you think eliminating or limiting foods has helped? I asked my doctor if there was anything I should do as far as my daughter's diet or if she should be taking vitamins & he said that wouldn't help. HSP is already in her system & she may have problems with it the rest of her life. It does seem logical to me that if you can boost your immune system that you would be less likely to get HSP again since having a weakened immune system is believed to let it develop in the first place.

With HSP being an auto immune disease you may find the symptoms get worse by boosting the immune system. I've certainly been advised to avoid things like echinacea. And alcohol is a big no no.

56 y/o, diagnosed with HSP Nov 2017. On 20 mg prednisone 1x per day and it had helped allot. Ice packs and Vaseline help keep legs moisturized. Also soak legs in salt water pool helped.Lavender essential oil mixed into Vaseline. Rest. Don't bother with coconut oil. Side effects of Prednisone are not fun...but it got rid of the spots...took a month. If I had to dry a good was bothering me... probably dairy and spicy foods. Trying to stay away from processed foods. all my blood tests were negative, chest xray negative, CBC tests all good. Have not had any itching. They have no idea what triggered this...possibly insect bite. Did a good rhumatologist. See my dermatologist and she took biopsies... confirmed HSP.

Hi,

My daughter age is 5y and she is suffering from HSP from last 3 month. HSP relapses to her 3 times. prednisone and IVIG and endoxan medicines given to her. daily 20 mg prednisone giving to her from last 3 months. now she put some weight on her and puffy. too many rashes they come and go if those are very severe then will go to the doctor. I don't know what are future side effects on it after having steroids. I also need help from you all if you can help my daughter to over come from HSP. all urine and blood test are normal.

Thanks,

Abbas

+919676422600

Hi,

My daughter age is 5y and she is suffering from HSP from last 3 month. HSP relapses to her 3 times. prednisone and IVIG and endoxan medicines given to her. daily 20 mg prednisone giving to her from last 3 months. now she put some weight on her and puffy. too many rashes they come and go if those are very severe then will go to the doctor. I don't know what are future side effects on it after having steroids. I also need help from you all if you can help my daughter to over come from HSP. all urine and blood test are normal.

Thanks,

Abbas

+919676422600

Hi,

My daughter age is 5y and she is suffering from HSP from last 3 month. HSP relapses to her 3 times. prednisone and IVIG and endoxan medicines given to her. daily 20 mg prednisone giving to her from last 3 months. now she put some weight on her and puffy. too many rashes they come and go if those are very severe then will go to the doctor. I don't know what are future side effects on it after having steroids. I also need help from you all if you can help my daughter to over come from HSP. all urine and blood test are normal.

Thanks,

Abbas

+919676422600

if you're taking steroids such as prednisone you should not be eating any sweets. Drink alot of water...I mean alot.

HSP is a result of inflammation in your body. You may find out where through blood tests, but then your blood tests come back all normal (like mine) they never found out where the inflammation was coming from. So I started the 20mg of prednisone and drank alot of water....I mean alot...some days I felt like I was floating. Dr told me absolutely no sweets (and it was Thanksgiving/Christmas 2017) The side effects of prednisone hit me, insomnia, sweats, alot of energy. I was on Prednisone for about 4 months and the HSP started disappearing. So all my tests were negative, big goose egg. So he started tapering me off the prednisone which took about 2 months. Still all tests came back negative. Then the appetite kicked in. What passed my lips went in my lips...got that under control. The side effects of Prednisone can last a long time....the only side affect after 1 year I have now is my ankles hurt and my feet swell every now and then. But the sweets and insomnia are gone as well as the wanting to eat everything in site. They never did find out the inflammation...he tried to tell me I had Rheumatoid Arthritis....I told him he was nuts... and we parted ways.

I tried creams, I tried coconut oil, olive oil, vitamins, I tried essential oils, bath soaks with epson salt, you name it. The sun seem to make it worse, kinda itchy. Nothing helped because it is inside your body. Some of my spots broke through the skin and I bought this intense healing cream off a medical site that cleared it up quick along with Peroxide. Ice packs helped alot. I also soaked in the pool which is salt treated. I would also recommend if you don't have to shave your legs on a regular basis...leave them alone.

So I realized I just had to ride it out....

So this is late, but I wanted to add my two cents. My Henoch Schonlein purpura was most likely caused by a wrong vegetarian diet. I was 18 and eating vegetarian diet was all the new hype. People should talk to their doctors before they do this. I spent 2 weeks in a hospital and gave up career in dancing.... I was unable to do sports for 2 years and started having anxieties. Those never gone away. However, what helped me majorly with the illness itself was eating meat. Even as a child this was always difficult for me, but I managed to change my habits and tastes. I love steaks now. Also, surprisingly I was advised by doctors to have occasional glass of red wine! But never more. Imagine being 18 and telling your mom to buy you a glass of red wine because the doc prescribed it lol So, don't avoid alcohol altogether. In fact, that glass of red wine helps with the blood flow, its quite amazing. Mix it up with green cheese like roquefort to add benefits to your heart.

All in all, balanced varied healthy diet full of greens, normal amount of meat, normal amount of dairy, iodinased salt, healthy oils, cut down on carbs (but only the unhealthy ones like white bread! Legumes are amazing source of vitamins and fibre eventhough they are full of carbs) ...is my personal recommendation. Before that, I ate no meat, did too much sports, ate too much bread, and didn't use much salt. I never ate too much sweet, and had actually had too much energy. I danced 6 times a week, run for fun, was always out and about, so it wasnt that. It definitely was lack of vitamins from meat and not enough salt. I also eat more sweets now to help with low blood pressure.

Regarding medication, they gave me bunch at first, but after I left the hospital they pretty much cut off everything. I was left with steroid creams and never taken any medication orally. After 2 -3 months I started going out with my friends again just not for too long. I tried to keep the mental state healthy and don't deteoriate completely, but regarding my mind that wasn't going very well tbh. Main thing aside of correct eating was keeping your stress levels as low as possible and never ever to exert your self. Sitting in one position for a while was also not good, you need to lie down a lot.