Is there anything to help the swelling go down ???
Posted , 6 users are following.
My 8 year old daughter has been diagnosed with hsp. The nurse has told us that her swelling is the worst she has seen in hsp patients. I can't even give her a cuddle at all as the pain is that bad and she is currently using a wheelchair and has not walked for 5 days due to the swelling in her feet and legs. This is heartbreaking anyone any advice on what's best to do please this is really breaking my heart watching her in this much pain!
0 likes, 16 replies
rocky31676 danielle43453
Posted
Did the doctor not prescribe dapsone or stocking to quell the swelling ?
I am sue the bad rash maybe a factor here.
With this much swelling, there maybe some kidney involvement too, did the doctor/nurse refer to it?
The best thing to quell the pain is actually a steroidal lotion or cream. Ask for betnovate or Eumovate.
danielle43453 rocky31676
Posted
Hi thanks for your reply. They have given her no medication at all and have just told me to carry on with calpol and ibuprofen. She has had her urine tested today and that was clear so I don't think it has affected her kidneys yet. I will pick up one of them creams tomorrow and give it a try.
rocky31676 danielle43453
Posted
It has side effects that can aggravate HSP.
Ypu can read it here in other dicussion under this forum.
harleycw rocky31676
Posted
rocky31676 harleycw
Posted
Not only that, there is danger of kidney damage with ibuprofen, that is already vulnerable in HSP.
danielle43453 rocky31676
Posted
Luckily I read that bit about the ibuprofen so I have just stuck to the calpol, don't no why they suggested to carry on with it.
rocky31676 harleycw
Posted
They need more experience with this disease, until they can learn and perfect their practice of medicine in HSP.
rocky31676 danielle43453
Posted
danielle43453 rocky31676
Posted
So she won't need that unless there is an interference with the kidneys ? So other than calpol and the creams you have suggested is this the only thing that can help ? It just seems so unfair
so many symptoms and so much pain and nothing to help it.
rocky31676 danielle43453
Posted
However, just use in the legs and not on face.
It has 5% steroid in its content.
harleycw danielle43453
Posted
harleycw danielle43453
Posted
danielle43453 harleycw
Posted
No she hasn't, what is that ?
arnie66 danielle43453
Posted
Hi Danielle, I'm so sorry to hear about your daughter. My daughter who is 11 is also going through a HSP infection. Her doctor had advised her to drink lots of water to keep the swelling down. She used to drink around 3-4 liters of water daily and I believe it helped. Further for the pain, we tried acetominophen (ibuprufen and other NSAIDs are not advised if there is a kidney infection). Finally for the joint pain, we tried acupuncture and that helped her a lot (this was however after the swelling had gone down). Hope your daughter gets better soon.
helen68675 danielle43453
Posted
Sorry to hear your daughter is suffering with this awful disease.
My son who is 16 has had it 15 months and has just started a 12 week course of Prednisolone steroids then he will start Azathioprine something which his rheumatologist wanted him to start but unfortunately blood tests showed his kidney function was not working properly hence the steroids. His symptoms have been a rash, swollen joints & muscle pain, abdominal pain all come and go. Has leaked blood & protein from kidneys since day 1 but biopsy last Aug was a good result so it was upsetting when one had to be done again a few weeks ago.
I agree with others, do not use ibuprofen even though there is kidney involvement.
When his legs were bad he had to rest them keep them elevated and we put ice on joints.
I hope your daughters symptoms do not linger as she is in the common age bracket and sometimes for younger children it doesn't get too chronic as my son's has been described.
Wishing you all the best
Cinders68 helen68675
Posted
Hi Helen so sorry to hear your son has HSP. My daughter who is now 15 has had it since Sept 2025. We have been to 3 different hospitals, the first two were useless and the third has encouraged her kidneys to die through lack of knowledge and care. She now has 19% kidney function and a creatinine level of 336 (70 being the highest you really want before proving the kidneys are slowly on their way out) Around 450 and a few other factors and it's dialysis. My daughter has also had 2 biopsy but as the results were obvious duE to her blood results, the consultant told us the biopsy was more for his benefit than for hers. He is supose to be an expert in HSP but hasn't got a clue. He has always said from day one there is no light at the end of the tunnel and any drugs prescribed were trial and error. Both myself and my daughter's father have now been tested for a kidney transplant and we are both a match. The only problem is that her HSP is still going strong so a transplant is out of the question so dialysis is her only option. Even that's a problem as shE wants to have a fistula but the yant thE bag in the stomach as this is easier for them as you can do it at home. The fact it has so many problems with it doesn't seem to bother them as long as they are not responsible. If the HSP doesn't go away at best she has four or five years on dialysis and then chance a trasplant or death as dialysis can only be had for around 5 years. This really is a horrific virus and the lack of knowledge even by "experts" is horrendous. The only plus side since taking prenisolone for 4 months and putting on 24kg from Oct 15 till feb16 she has now March 17 lost most of the water weight and is down to 72 kgs. She still has 7kgs to loose and you can still see the excess fluid but she feels much better (originally she was 60kgs and went up to 84 kgs).
We live each day as it comes as no one knows when her kidneys will fail and if she gets the fistula op in time and if it will work. She has been told by a new consultant at the same hospital that she was just "unlucky" with her HSP. I agree she was unlucky she had a consultant for over a year that was supposed to be an Expert who did nothing to protect her kidneys😭