Trying to Diagnose my Henoch-Schonlein purpura

Hi Catherine

My 15 year old daughter was diagnosed with HSP in May 2017. She was tested for meningitis an thankfully that was negative. Our GP thought it coukd be HSP but he had only seen two cases and both years ago and in much younger children.

To cut a long story short, the only way to be sure is to do a biopsy on the spots and test. It was positive.

She had flare ups on her legs, arms, lower torso and sometimes her whole stomch and part of her back. The legs were the worst affected.

She was then prescribed 20mg of prednisone and regular bloods and urine tests to check for proteins. They worry about damage to the kidneys which is very serious.

It got much worse and some days her legs were purple and looked inflamed. She was referred to a Rheumatologist.

She got quite sick with stomach pains and vomiting and on two occasions was hospitalised. Her steriods were increased to 60mg.

We have done quite a bit of reading and it seems to be an immune system problem. She had an infection on her face which may have been a trigger but they really do not know what causes HSP.

We put our daughter on vitamins and probiotics. Our GP prescribed the vitamins, omepraprezole to stop ulcers in the stomach and calcium to help her bones while taking steriods.

We thought it was never going to go away and then the spots would fade and we got excited only to be disappointed when they flared up again.

The steriods are being reduced very slowly after our daughter decided they were not helping. She is now down to 7mg day and hasn't had a new flare up for almost 3 weeks. The rheumatologist and GP seem to both think it is a time thing. The flare ups get less severe but can come back if they get run down or sick but shouldn't be as severe. Fading more quickly and less noticeable each time. Our daughter says it feels like popping under her skin a bit like pins and needles when she is what she calls flaring.

We think the probiotics and vitamins have helped to boost the immune system which has helped reduce the severity of the flare ups.

She hasn't had a new flare up for over two weeks now and has been discharged from the Rhuemotology department back to our GP where she is to have bloods, urine and blood pressure checked regularly for the next 6 months.

It has been a real rollercoaster and she wondered what she had done and often sked why her!

I hope this has helped in some way but I would suggest to get back to your GP and get your kidneys checked and discuss options. Probiotics could also help.

All the best for a full recovery

Hi, this does sound like HSP although not seen White rings around the blotches. Steroid cream will have no effect as this is an auto-immune disease where your immune system gets triggered but cannot turn off and starts attacking your small blood vessels, hence it is under the scheme. You don't want to boost your immune system as that will make it worse. My daughter got HSP 3 years ago when 19 and is still not in remission although much better (with her tummy problems) and on no medication (nothing her rheumotologist prescribed worked and she went onto a very healthy diet - hardly any meat, diary and raw/plant based diet). You need to get referred for tests and make sure they test your urine for blood & protein as the disease can affect your kidneys. Don't let the doctors fob you off. Antibiotics and antihistamines are not the answer. Best of luck, there is light at the end of the tunnel and everyone has different experience with this. By the way it was a Hep B vaccination that triggered my daughter which she needed to do her nursing placements. Turned out she didn't need the vaccine and it overloaded her immune system.

There will be an end to this.

My son was diagnosed back in 1995, the poor little guy was in so much pain. His legs looked like they had been beaten, it was awful. Because his flared as a result from Upper respiratory we did end up in the Hospital but mostly due to his lungs. 

At the time my son was diagnosed I was told that HSP is genetic, usually passed thru the male genes and is found most often in males of Mediterranean descent. (not so much)

After a long night of being on my feet until 4 am and then back up at 7 am, I believe what I have been experiencing is HSP.  My ankles, calves an now my thighs, are covered in the rash that I have seen posted.

  I am of Irish descent, I am female, and the son that ended up with HSP very much favors me, (genetically and in physical appearance).

  THANK GOD I just happened to look this up under the heading of "women HSP?)

I have had this for years, and thought it was an allergy.  But now I can remember my the first time I experienced an HSP explosion. It was a full body experience. I was diagnosed with poison Sumac? 

   The stomach pains I had last week, plus the late nights on my feet, and joint pain galore and then the hot firm rash that is going over my legs as I attempt to communicate, pretty much seals the deal. I've known forever that my joint pain wasn't normal, and now it all adds up.

  The biggest contributors I have now been able to link to my rash outbreaks are;

#1. Stress

#2. Stress

#3. Allowing my mind and body to become run down- (due to stress)

#4. Too many hours on my feet.

#5.  A reaction to another allergy attack...this week I had a horrid red ant bite near the bone/eye socket.

#6. and...Stress.

I know this was about me, and I was to be responding to you, However, I wanted to thank you and all the women who have posted their stories.

And...'This too shall pass.'

Suggestions:  

Be patient, that is the hard part.

Take deep breaths, and relax.

I'll get back to you at a later date with hopefully more helpful suggestions. I have to get sleep as I have a unexpected jaunt up to my youngest son's college tomorrow.

 Try to be content with where and how your progress is going. (easier said then done)

THANK YOU AGAIN !

Mo

p.s. Mediterranean male? 

NO SIR! Try IRISH, BLONDE HAIRED, BLUE EYED LASS!!

Once more my dear departed Mother's wisdom (common sense) proves true- "Listen to your own body, its your body."

take care of your mind, "for it is the mind that makes the body rich" (Shakespeare)