it's starting to get a bit annoying, just looking for some support

Did your son have kidney biopsy ? 

Is it painful  like the skin biopsy ? 

 

Thank you for the supportive words, indeed a colleague said a similar thing about breaking a leg. 

It is awfull to hear about the setback with your son's kidneys. Usually a kidney biopsy is more invasive than a skin biopsy, so I hope it will go well! My own kidney's function declined a bit as well (I went to the hospital and all). However, now I have blood/urine check-ups every three months to make sure the kidney function does not deteriorate more (if they do the probable course of action is indeed steroids).

In any case, after the first setback they are now funcioning better again, so there is a big chance for your son as well. Do keep track of the medication he is using. My kidney function became worse when using painkillers like aspirin or ibuprofen (called NSAIDs), which have an antiinflammatory function. However, NSAIDs are also bloodthinners, and it is blood thinners in combination with bleeding/inflammation of small capillaries that might cause problems in the kidneys as well. So my doctor is telling me to not take any NSAIDs any more and only use painkillers like paracetamol. 

Good luck on Monday!!!!! 

He had a biopsy last August under general anaesthetic so it went fine and didn't have any sickness after or even need to sleep it off. He now seems to be suffering with a sore throat so it might have to be done under a local this time which would be a completely different experience.

He hasn't taken any drugs with ibuprofen because his kidneys have been leaking protein & blood from the beginning.

I'm glad your kidneys are better now hopefully his will recover after steroids.

He had one last August under general anaesthetic so didn't know anything about it! He had no reaction after having an anaesthetic, got back to ward and watched a film!

Hi Helen, my daughter is 15 and had now had HSP for 18 months now. She had her second biopsy last December. She now has only 19% kidney function and will need dyalisis soon. We are at GOSH but hope to move to Birmingham as they are much more qualified in the understanding of HSP. Most of the meds my daughter has been given she finds the HSP makes her vomit hours after taking them which doesn't help, so now the same drugs are given in smaller doses and we are hoping to up the levels, i.e., her haemoglobin is around 89 instead of 120 and the injection made her so ill. Now she's on an 8th of the dose she needs with half a anti histamine taken 30 mins before. I totally understand your frustrations and worry. I find my daughter needs to sleep at least 12 hours per night and a nap in the afternoon. School is and has been a major problem to get to, however work sent home has kept her in the top sets as she's prettyself motivated.

We have always been told there os no light at the end of the tunnel as even if my daughters father and i are a match, the HSP could kill the donor kidney too. GOSH have had no teenage survivors in the past 10 years!

HSP is supposed to be self-limiting condition, especially in children. 

There is no need for meds or any drugs in most cases. 

What meds are these ? 

As my daughter is 15 the stakes are much higher for Nephrotic syndrome and end stage kidney happening, especially if you have blood and protein in your urine for a year (+4) and are not looked after until it is too late!

She is on calcium carbonate (3 x a day) as calcium acitate makes her vomit, instead of the Darby injection for haemoglobin she's on another formula but a much smaller dose, she also needs blood pressure meds, so far two of them make her vomit so tomorrow she will be tried on a third, 400 mg of iron and vitamin D again only a small dose as she vomits the higher doses. All the vomiting happens between 6 and 12 hours after the meds which is why we have started with one and slowly are building up more and more. At some stage soon she will need to have a fistula and then within 6 weeks dyalisis, however if she cant manage the meds, no dyalysis!

Sorry to hear that your daughter had to go through all this. 

HSP, if detected and managed properly in children, should not go to nephrotic stage. These things would happen in seniors/adults cause their immune system is weaker. This is rather annoying and very sad. 

 

I know which is why I am unhappy my daughter's rate of survival is slim as any new kidney introduced has a much more significant chance of getting attacked again and we will be back to square one with 4 or 5 years of dyalysis then death! What a fantastic life sentence my daughter needs to suffer because of negligence. Makes you feel so good as a parent as there is NOTHING you can do to help your child.

Sorry to hear this. This should not happen in this age of advanced medicine.

Let us know how she does with new medications or kidney transplant.  

Which member of your family has HSP?

I have. 

How long have you had it?

3 years now with rash, although it is quite less now .. maybe flare up once or twice in a month. But it is painful on the lower part of the body.

Joint pain and abdominal pain with mild diarrhes - about 1.5 years

Thankfully not yet have blood or protein in urine. 

Annabel,

So what druges have you been taking and what is the reponse to them?  I had seemingly constant symptoms but when I took prednisone they retreated.  Of course they would come back again some time after I tapered off it.  My case was unique in that after about a year of this constant issue coming and going I did enough research and tried enough things I was able to narrow mine down to being a chocolate allergy.  It's been a year since I stopped and only one time when I accidentally had a tiny chocolate ball in a cake did if flare up so I'm fairly sure in my case.  However, I haven't heard a similar story as mine but perhaps some of these cases are due to some allergies as well.   Would be curious what doctors and what drugs you were prescribed and how they affected you.    Hearing all the different information helps us see what types of cases these truly separate into and which types of drugs seem to help in the different cases.  Note:  I ate plenty of chocolate regularly so in my case it was something that I became allergic to.  I point that out because something must have caused the change in my body and you can't discount something based on being fine with it in the past.

I use this forum because there is no HSP forum for Adults. 

And HSP in Adults is rare but very difficult to manage too. 

It is interesting to hear your case of chocolate allergy triggerring HSP. 

I have this question: 

You said you ate plenty of chocolates regularly. Generally if someone is eating something regularly, it would suggest that he/she i not allergic to it. 

so, I am wondering, the trigger might be something else; maybe if you changed the brand of chocolate, it would have new ingredients in it that may have triggerred it?

What were your main sysmptoms in HSP and how well are you doing now?  

I meant that over my lifetime I had plenty of all kinds of chocolate.  However, as I developed HSP, it seems to be any kind of chocolate.  I believe it gradually got worse as it started with minor rash on feet and legs and prednisone took care of it instantly with a taper of the medication.  But then I kept getting it and each time it seemed to get worse with the last  few episodes just wiping me completed out laying in bad, feet bottoms, knees and elbow joints really sore and spots on top of spots really bad worse at the feet but getting up almost to my chest in some places.  I think part of this (long story) but I went to clinics at first to treat my feet issues first and almost by accident they tried out the prednisone, then later when I went to actual family doctor they didn't believe or know what I had, even when I had finally done enough research myself and during this time I could not get them to prescribe me prednisone, so I finally said to heck with it and went in to a clinic and not telling them about my doctor I suggested they give me what they have given me before and that eventually cleared me up.   Towards the end, I finally used a phone "ask a doctor" app and that one suggested by the description and pictures it was HSP and referred me to a Immunologist and when I saw him, he immediately diagnosed it as HSP, although at this point he did give me Prednisone but as nobody anywhere can tell you why it happens, he just happily prescribed me the Prednisone tapers each time I had an episode.    After tons of research I read that the types that respond well to Prednisone could also be attributed to allergies so I went down a long road of cutting all things as defined to be possible allergens in people, until I cut out chocolate and finally no more issues.  I now eat everything else and no issues.   I'm not about to start experimenting with types of chocolates as I'm special this way and couldn't care less about trying to find out if a subcategory of chocolate is o.k. or not.   Happy to just avoid it entirely because the HSP symptoms really wipe a person out.   Even though I only did Prednisone tapers, which meant I started with 6 tablets per day then did something like 6,6,5,5,4,4,3,3,2,2,1,1   It still does horrible things to your body like people have mentioned because it breaks down your muscles and without as much muscle you burn less calories and get fatter, also your mood is changed from normal (although it's bettern than being wiped out from the HSP) and you get acne and such.  It is a terrible drug and really should just be used as minimally as possible.   While having HSP even when getting better you really can't just go exercise and expect to get healthy.  You just wipe yourself out and it takes a long time of just resting for the body to stabilize but after a couple months or so you can ease back into it.   I'm finally back up to the best health in my life because I appreciate not being so wiped out due to whatever this disease is from.  I workout almost every day and built all and more of the muscle back and having muscle burns calories so that got me back into ideal shape without having to do a ton else.

Sorry to hear that your daughter's kindeys got so bad. I hope she'll manage the meds. And really hope she'll feel a bit better soon!

I agree with there Rocky! I've read that you've had it for over three years now. That must have been hard to handle for such a long time. I heard from my doctors that it could go in a "dormant" state... so hopefully it'll do that for you soon (even if it is just for a little while)

Hi Harley, that is pretty rare indeed, but happy that it is so manageable. So far I haven't been using many drugs. Mainly paracetamol. I did a short week of prednisolon, however, doctors in my country are not very keen on giving medicine. So, paracetamol it is.

It is a good thought that food intake might play a part though! I guess having a food journal of sorts might help (that is what they advise people with unknown food allergies as well)

A "dormant" state" of HSP, so it means it will never go away and flare up like chicken pox shingles ? 

As of now, it has not gone dormant and hope this happens soon. 

From these forums it seems there is no cure, just symptomatic prescribed meds that help mask the symptoms fir a while. 

Thus, it is proven that most of HSP is self-limited and maybe medications can do more harm than good. 

 

The problem is it is not going to dormant state yet, cause i still have skin rash on lower body (from lower abdomen to lower legs). I have heard in adults that HSP is difficult to manage and it can persist as chronic disorder.