HSP isnt going away. What should I do?

Edited , 5 users are following.

Hi all,

My boyfriend who is in his early 30s was diagnosed with leukocytoclastic vasculitis(through a biopsy) Doctors believe it is HSP. This started more than 3 weeks ago. It all started with red dots on his ankles and feet and slowly grew up his body to legs, stomach, back and arms. He experienced lots of joint pain and abdominal pain to the point he couldn't even stand. He went to the hospital and was seen by a rheumatologist. They put him on 20mg of prednisone slowly tapering the dosage down within 10 days. He noticed improvements at first but when he got off the prednisone he got an extreme flare up. His legs were fully covered in red spots, worst he's ever had and as he mentioned "it felt like his legs were on fire". Doctors put him on 20mg of prednisone gain this time for a longer period however it doesn't seem to be working. The joint pain and abdominal pain is coming back again along with the rash. He is in extreme pain again.

I am reaching out to ask for some advice. Are there any other medication he can use? Are there certain foods that will help reduce the inflammation or foods that cause flare ups? Will exercise help in any way? Anyone advise would be greatly appreciated!!

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11 Replies

  • Posted

    Just FYI, but recently a doctor visit told me about high blood histamine. You should have them test for it and check out low histamine foods and avoid high histamine foods. Also maybe take some antihistamines in the meantime. Prednisone at such a low dose also sounds like it would not do anything. Mine started at 6 10mg pills per day for 4 days, then 5 for a couple, 4,4,3,3,2,2,1,1 like that.

    Anyway, each case is different but for my case high prednisone and tapering down works pretty fast but if the dose is too small or I taper too quickly and keep eating high histamine foods it won't work well and I would have to restart the high dose and taper down.

    Anyway, good to ask the doctor about the dosage and about high histamine. Trying to avoid high histamine no matter when when having HSP type symptoms should be a good thing. It definitely mean zero alcohol, no chocolate, coffee and fermented foods,etc. Look it up and good luck.

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    • Posted

      thank you for the information! I really appreciate it! I'll definitely take a look into histamines.

      When he is on prednisone he has to go to the washroom almost every hour so he isn't even able to sleep at night. Did you experience anything similar to this?

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  • Edited

    Hi,

    My HSP started when I was ~23 - I'm now at 11 years and counting. It is just as active as ever but medicine keeps the symptoms under control most of the time. However, it did take a while to find the right ones.

    Some people react well to prednisolone but for others, like me, it has no positive effect. I've also tried azothioprine, which didn't help. For me, dapsone was a life changer. It removed the abdominal pain, joint pain and skin rash within a couple of days. Not every one can take it though.

    It is important to get kidney function checked and regularly monitored. There can be a lot of kidney damage without any outward signs. Mycophenalate mofetil is a medicine I was on, which reduced the inflammation in my kidneys but a fair amount of damage was done because it took me more than two years to get a diagnosis and then the non-kidney specialists didn't notice the worsening kidney test results. Ask to be referred to a nephrologist.

    I don't want to make it sound doom and gloom - there are a lot of medicines to try. I just want to highlight what to look out for. The rash, stomach pain and joint pain are horrible but generally don't have long term effects. With an early diagnosis, you have a much better chance of successful treatment.

    Also, avoid alcohol. That causes a big flare up of the rash for me (and lots of others have reported the same).

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    • Posted

      Thankyou for your response. He had urine tests done and they have all come clean so far except for the first one. The first test showed traces of blood however every test after that was clean which is weird. He recently did a urine test where he had to fast for 8 hours so we are waiting on those results. I will tell him to see a kidney specialist for sure. We are staying very positive and are hoping to find an early diagnosis. I personally think he may have a bacterial infection that caused this so I am going to request the doctor for antibiotics and see what he says.

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  • Edited

    All those symptops you stated above belongs to HSP.

    For HSP, in particualr, there is no treatment thorough medication. HSP goes away itself.

    HSP happens when human immune system gets weaker due to some other disease, could be some bacterial infection etc, which could disturb his immune system.

    Better to find out the reason of HSP. If you are able to control the cause, HSP will shed away in a day or two. Or in 3 days at MAX.

    Additionally, try to boost immune system. Consult some nutritionist to prescribe multivitamins suppliments etc.

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    • Posted

      Thanks for your response. I appreciate it!

      The root cause may be a bacterial infection so I will request for antibiotics or ask the doctor to test for a bacterial infection.

      Great suggestion on multivitamins. He has never taken any before so this may help a bit.

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    • Edited

      This is not correct. HSP is an auto-immune disease. The symptoms are caused by an over-active immune system that is attacking the body's own cells. The immune system may have initially over-reacted to a bacterial or viral infection e.g a sore throat, but there are many possible causes. Boosting the immune system may make symptoms worse. The medications given to control the symptoms are immunosuppressants for this reason.

      HSP in adults is very different to that in children and can be much more severe. It should not be casually disregarded as something that disappears in 3 days.

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    • Edited

      Please see my response to the post by sahib. The information being provided is not very accurate. There are many cited medical papers that provide correct information about HSP in adults.

      Blood in the urine is not of major consequence if it is trace amounts. I always test positive for trace amounts but my kidney function has now been stable for three years. It is the kidney function and protein creatinine ratio that needs to tested regularly (amongst others).

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  • Posted

    10 mg is a really small dosage. i started on 60mg for 3 weeks and tapered down from there over almost 2 years. make sure someone tests his urine. hsp can impact the kidneys long term for adults. id ask for a review of the treatment, it sounds like they are taking a gentle approach

    the biggest thing i did - apart from the drugs was to make healthy choices. i researched autoimmune foods and diets. there are lots of options out there. the whals diets, gaps, or aip paleo. exercise more in ways that are kind to your body and remove as many stresses from his life as possible. i changed jobs, sorted out money issues, stopped unhealthy relationship s and moved to an area i could afford for a more gentle job.

    call the vasculitis uk charity they have some great insight into treatments across the uk and specialist centres to vet referred too. good luck!!!

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    • Posted

      Thankyou for your reply! The rheumatologist wanted to start him off at a low dosage (20mg) as there are lots of side effects. If that didn't work he was going to bump the dosage up. For the most part he eats very healthy however there could be foods that increase the inflammation. Everyone around him has been supper supportive including his colleagues at work.

      His urine has been tested several times. The first time small traces of blood were seen however every test after that has come clean. This could be because he went on prednisone but I'm not sure. I still find it weird how the other tests came clean but the first didn't. The meds are causing him to go to the washroom every hour so he is sleep deprived. Is this normal?

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    • Posted

      prednisolone has the potential for many side effects. when i started on it i would get up in the night which i never need to normally. i put it down to my system flushing itself of toxins. i was also really thirsty for the first few months. i had hair loss and weight gain. but all of the side effects were worth it for me as the pain i had been in went and I started my recovery.

      your food and environment can all be triggers for autoimmune disorders and some people have success in identifying specific things. personally i never have, but the health lessons i have learnt have meant i keep getting stronger and fitter. please do have a look at nutrient dense diets and how to keep not just a but the healthiest gut biome possible.

      it might be a slower recovery than you think but if progress is being made go with it. do give the vasculitis uk helpine a call. they were great for me. they have a website with some good information. everyone deserves the chance to be healthy. good luck

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