DIET AND HENOCH-SCHONLEIN PUPURA - ANY VIEWS?

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Hi

I am just diagnosed with Henoch - Schonlein Purpura. Has anyone had any success in controlling it by changing their diet? Not eating stuff? Taking vitamins/minerals/using natural remedies/using cream for the rash? 

I know people are saying steroids/chemo drugs help, but I don't react well to those. I have had cancer and taking the drugs was a nightmare!

Thanks

Magstah. 

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13 Replies

  • Posted

    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.
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    • Posted

      Hi

      thanks so much for your reply. I am so sorry for your daughter. I have a rash currently, and it's itching like mad! I've also got an anal lump, and I get waves of stomach cramps. Having only been diagnosed yesterday, I await test results to see if my kidneys are OK. 

      It looks like this is a trial and error situation I guess. I'll be trying to not eat too much protein, and luckily I don't eat too much chocolate or drink too much. Being vegetarian, I eat a lot of veg anyway, but I think I will have to find ways of eating more. Dairy foods will be what I will find hard to cut out. I have read some people say they can cause flare up. Maybe trying soya milk will help. 

      If I find any diet changes which help, I'll post them. In the meantime, my thoughts are with your daugther. 

      Thanks,

      Magstah

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  • Posted

    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. 

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  • Posted

    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.
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  • Posted

    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.
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  • Posted

    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.

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  • Posted

    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

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  • Posted

    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

    Report / Delete Reply
  • Posted

    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

    Report / Delete Reply
    • Posted

      hello... My doctor only had me on Prednisone 20 mg per day...10 in am and 10 at night. he had me on the present news on for 3 months and then he started tapering me off the prednisone. are you currently on your full strength to prednisone? if you did not taper off the prednisone which took me approximately three months to do that that may be the reasoning for the weight gain and the puffiness. it's just my opinion but that seems to be an awful lot of Prednisone for a 5 year old. I'm 56 years old and was on 20 mg. if you have any further questions please let me know.

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  • Posted

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

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  • Posted

    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....

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