feel so helpless#meds#scaring#things to avoid#recovery#help

[Dizzyliddy]

I am a mother of a 20 year-old daughter who was diagnosed with IGAv/HSP In February 2024. Her first flareup was very bad, ulcerated and has left pretty bad scarring all up legs which seems to be taking a very long time to heal and fade. She’s been having flareup approximately every two weeks, not as bad as the initial one and they seem to fade after about a couple weeks. It is over arms, legs ,buttocks and lower back. We have seen multiple dermatologists and nephrologists some good some bad. Her current nephrologist seems to have got good knowledge of the condition and at the moment it is trial and error to try and control the flareup. She is getting monitored for a kidney health regularly. Initial diagnosis took quite some time there was a lot of scratching of heads, but after Skin biopsy IGAv was confirmed. She started on topical steroids, anti-inflammatory and pain relief. Then she moved onto oral steroids (prednisolone) for four weeks, flareup continued and then the nephrologist prescribed immune suppressants for six months, prednisolone again for another six weeks and she’s also got blood pressure tablets. The dermatologist has put her on penicillin. I’m not quite sure why, it wasn’t a very good experience there . The frequency of the flareups is obviously causing a lot of mental strain and the scarring from the initial flareup as she doesn’t like getting the legs out in public. This is obviously worse for a girl of her age. Dermatologist haven’t been very helpful with regards to helping her with other possible treatments of encouraging or speeding up the healing process of the initial flareup which is left with the worst scarring. Would like to gain knowledge on other peoples experience and treatments of the above as we feel totally helpless at times.

Many thanks

Lydia

[Mooka]

Have you rung the vasculitis helpline? They may be able to point you in the direction of a hospital offering more specialist care for your daughter’s vasculitis. It does take a lot of trial and error to bring it under control but if you feel the doctors don’t have the knowledge you may be better off moving to a different hospital.