HSP - alternative therapies? and how long to it leaves permanently?
Posted , 36 users are following.
Hi all. I came online for answers re HSP, but this seems as close as you get to anything! My 13 year old son came home from school in December 2012 with a rash that looked like the meningitis rash on his legs. I took him straight to A&E where they treated him for meningitis as soon as they saw him. A few hours later a doctor came around and said that she believed it wasnt meningitis (thank God), but that it was HSP. (She had had it herself as a child and recognised his symptoms as soon as she looked at him, which led to fantastic care as she knew what to look for). She kept him in hospital for 3 days and the rash died down, and the pain in his knees also subsided. He was sent home with a box of urine sticks which he had to use everytime he went to the loo, with a message to bring him back if his protein was high. It was invariably +++ protein every time. He was in and out of hospital regularly getting bloods checked etc, poor fella said he felt like a pin cushion. Short note version, they were keeping an eye on his creatinine level which should have been below 50, his rose to 220 and then they eventually carried out a kidney biopsy to make sure there was no permanent damage.
The rash still comes back regularly, and always seems to come on if he's feeling at all unwell. Today, for example he has a sore chest, and the rash is back again. It seems his immune system is the problem here. The first time he caught this he was just starting an antibiotic for a throat infection. The second time the rash came back he had a sore throat again. I came online to see if there are any alternative therapies I can try, he's sooo fed up with all this, and in the middle of GCSEs and could do without all this. We're up with the Head of Renal in the Children's Hospital next week again so I'll ask her when I see her. He's never been prescribed a single thing for this since taking it, so if anyone has any suggestions, I'd love to hear them. The doctors are obviously concerned with keeping his kidneys healthy, and rightfully so, but I'd like to try and tackle it from this side to stop it happening. Also, if you or your child has got out the other side of this, I'd love to know. Something positive would be great. Thanks, Mary
1 like, 63 replies
ZBee
Posted
Sorry to hear your son is having such a rubbish to me of it all. I've been told that when children have HSP it usually doesn't last that long.
The main problem with HSP is a defect in the immune system, the IgA antibody we have is over produced which makes it attack our bodies and kidneys in particular. I have been diagnosed with HSP and IgA nephropathy as a result. I have found that when I'm ill with colds or coughs, they last a lot longer and I do feel a lot more run down than how I used to. I eat healthier to ensure I get all my vitamins and nutrition in order to prevent feeling so unwell, it helps but it doesn't give a cure! As a vegetarian I was also given iron tablets because I was anaemic which probably didn't help!
When I had the rash constantly for 6 months to the point I was unable to walk or get by with day to day life because I was vomiting so much and my urine was constantly showing blood +++ with occasional protein the renal doctor put me on a two month course of corticosteroids in order to protect my kidneys from further damage and my rash has never been the same since, I have scaring and when I drink and eat or exercise excessively the rash comes back but never to he extent that I cannot get by on my regular day. However, I found the two months I was on the steroids unbearable, it was the only thing that made an actual difference but I have begged my doctor not to go on them again. That is probably why your son hasn't been prescribed them, I am sure they are a last resort medication.
I would however advise them as they made a massive difference, and at the time I was in my first year at university and was struggling to cope with workload being so unwell so I understand how frustrated your son is.
I do hope he gets better soon as I wouldn't wish such a horrid illness upon anyone!
Sorry I can't provide a useful remedy.
Best wishes, Zoe
andre48633 ZBee
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mary55774
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Thanks for the reply. Yes, the doctor has always said that the steroid was a last resort - that's why she did the biopsy, just to make sure he didnt need it as she said it was stronger than treatment given to a cancer patient. I'm just wondering, other than his diet if there's anything I'm missing as his mum that I could be doing for him. I'm going to set up a couple of sessions of acupuncture, if he'll agree. Thankfully he doesnt seem to have had it as bad as you did, and my heart goes out to you. I hope you're making a full recovery. I may try a health shop at the weekend too - you just never know what's out there! Fingers crossed this goes away eventually, for you both. Take care. Mary
blueflamingo
Posted
My HSP started after a sore throat and I also get bad flare ups whenever I am ill. I'm interested in any suggestions anyone can offer because I haven't had any luck with drug treatments. I'm just about to start Dapsone - anyone had any success with that?
I'm playing around with my diet at the moment to see if I can work out what sets it off. I'm currently trying to cut out milk products. I'm finding it too hard to get rid of chocolate though...
I had to stop steroid treatment because the side effects were too bad. However, the HSP symptoms have got worse since so perhaps they did help the HSP a bit.
gloriarh blueflamingo
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blueflamingo gloriarh
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I didn't find anything that I could attribute to setting it off (other than alcohol).
Betsy123
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Ruthiepegs Betsy123
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Can you tell me what Dapsone is please? My 15 year old daughter has HSP, diagnosed in May of this year and it just won't go away. To say she is fed-up is putting it mildly. Look forward to your reply. xx
Betsy123 Ruthiepegs
Posted
I can completely understand how your daughter is feeling! I literally went through a stage where I didn't want to go out because I was scared of my legs getting worse so I can definitely sympathise.
I was referred to a dermatologist who gave me a drug to try called dapsone, it's an immune suppressant so it stops your immune system from being so hyperactive and causing the rash. They say hsp is an auto immune disorder so this medication has really worked for me, I only take half a pill every other day but it was a massive relieve to finally have the rash gone! I really hope this helps.
blueflamingo Ruthiepegs
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Ruthiepegs Betsy123
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Ruthiepegs blueflamingo
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Dapsone sounds like it's worth trying, especially as my daughter missed so much school, it might just help her get back to school and cope better.
Will keep you informed and thanks again. xx
JuliannaS blueflamingo
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Thanks,
Julianna
harleycw JuliannaS
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Julianna,
When I first saw a dermatologist and they didn't know what this was, they told me I would have scars forever.
Well, I didn't and since then had much worse episodes with spots on top of spots really bad and they always healed up with no markings. Since I found my trigger I haven't had any for almost a couple years now and you would never tell I had it.
Smons harleycw
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harleycw Smons
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You have to cut everything out and then add things back in slowly one at a time. Search the web for allergies and HSP. Keep in mind that this is only for some percentage of people with HSP. Other causes may not be due to allergic response at all. For some others though, being careful not to expose yourself to anything that taxes the immune systems is a good thing to do as this can also bring on symptoms for another percentage. For the rest, who knows. Regardless, it's a good idea to continue to eat better, reduce food that are known to cause allergies and take better care of yourself anyway. Good luck !
andre48633 blueflamingo
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blueflamingo andre48633
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Hi, I've now been on dapsone for over three years. Initially, I started on 50mg per day. WIthin a couple of days, it stopped my ankle, knee, hip, elbow and wrist joints from being swollen and painful, stopped my stomach pain and removed the rash. It controlled the symptoms very well as long as I didnt have any alcohol (which brings out the rash).
After about a year, I found the effectiveness decreased slightly and I sometimes had a few marks on my legs (but compared to having very little non-marked skin, this was a very minor inconvenience). I was put up to 75mg per day and this again removed the rash completely.
About 18 months ago, I was also put on MMF to try and stop the ongoing damage to my kidneys and I took this for a year. Since coming off MMF, I have found the dapsone has not controlled the rash quite as well as before but it is very very minor marks compared to what it used to look like. I still have no stomach pain and no joint swelling or pain.
For me, dapsone gave me my life back. Since being on it, I have been out of pain and have been able to show the skin on my legs and arms. However, it is not a cure. It just masks the symptoms. I still have active HSP and the rash returns if I miss a couple of days of dapsone (or if I drink alcohol). I've now had it active for eight years so I'm not expecting any magical disappearance any time soon but dapsone lets me get on with life.
Not everyone will be able to take dapsone, but it is worth discussing with a doctor and I recommend doing so with a dermatologist because they use it to treat other conditions and are likely to know most about it. You will need regular monitoring and blood tests if put on it. It did not give me any noticeable side effects, other than occassionally being slightly breathless when exercising (because it affects your haemoglobin).
blueflamingo JuliannaS
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Hi, my flare ups are now very well controlled by medication but I still get some rash and occassional swelling whenever my immune system gets challenged e.g. I get a cold or other infection.
My ankles in particular were very scarred with the brown staining when I first started taking dapsone as the rash had been heavy and constant for years. It has taken years but, whilst I still have some staining, it is barely noticeable compared with what it used to look like. I don't think it is likely to disappear completely but it doesnt bother me. So it does fade over time. If you have been lucky enough to have had light rash or rash that is not constant, I think it very likely the staining will disappear completely.