Sever attack today from UV😔

[Ledi]

Hi everyone, I hope you are all doing well. I have tried to read as many posts as possible and I’m very saddened to see so many of you suffering from this😔

My father was diagnosed with Hypocomplementemic Urticarial Vasculitis (HUV) 2 months ago. The doctors stopped his medication yesterday as he was feeling better and this morning he had a severe attack that he couldn’t breathe! Body from waist down with red/purply rush! We are all so lost and upset, don’t know how to help him. What has helped you guys?

God bless🙏🏻

Ledi x

[zoe69 Administrator Volunteer Vasculitis UK]

I have GPA and the treatment guidelines are different so I cannot offer personal experience and advice.

Maybe this will help:

vasculitis.org.uk/about-vas...

[Ledi in reply to zoe69]

All the best to you dear. Thank you🙏🏻

[Mooka]

Hi Ledi

Like Zoe69 I have a different type of Vasculitis but I think you should get in touch with the doctors that stopped his medication. Sometimes you have to be a bit pushy with receptionists and or secretaries. Good luck and let us know how he gets on x

[Paprika60]

I have the same. A bit shocked to read that the doctors stopped his medicine. Do you mean he is not taking anything? Where are you located? I am sure this site can come up with good recommendations for NHS specialists. But looking at the photo, I would have thought they will prescribe steroids right away to control the symptoms. In my case, that’s always the first thing I was prescribed. HUV is very rare so one needs a doctor who has good experience in HUV. Also antibody treatment should be considered. Hope he finds help very soon. All best wishes.

[Ledi in reply to Paprika60]

Thank you so much for your advice. Sorry about the late reply. It has been very busy for us. My dad is stable now, back on steroids and immunosuppressants. The doctors are doing more tests but as you and everyone here said not many accurate answers. It’s just so scary!

Best wishes to you, Ledi xx

[jackrussell]

Hi Ledi, I have UV and have extensive rash with a flare, would suggest treatment was stopped to early and should have been at least tapered , has your dad had an infection recently ,I am usually also given antibiotics as well as the steroids as we find that helps ( for me ) ,most certainly get in touch with your dads consultant, a G P isn’t usually much help in these cases.that rash isn’t going to go away on its own., so would suggest you get in touch ASAP. ( meantime just to help cool the rash down , cold towel would help )

[Ledi in reply to jackrussell]

Thank you very, very much for your advice and input. I wrote down whatever you guys here have recommended and will run it by the consultant. I cannot tell you how much this helps and how consoling this is. It’s a scary time for us at the minute and we are all looking at each-other in our family and at the doctors and no one is saying anything, so much uncertainty😔

Dad had a temperature of 38.7 that morning and within 2 hours his lower body was covered in that rush. The temperature went down straight after the doctors started his medication and has been ok now. Not sure what exactly it was that flared it up but the medication being cut down straight away might have been the main one.

What strikes me is how has he lived so far without no symptoms at all and suddenly he can’t live without the medication. What has changed in his physiology?! God knows, the doctors sure don’t.

Best wishes to you and thank you again for sharing. Ledi x

[jackrussell in reply to Ledi]

Hi Ledi, I have had UV for 25years,and for many years had no problems at all,but like your dad ,I started to flare and even with medication I was flaring every month ( clearing in between whilst on Steroids ) this went on for 5 years, my temperature would go sometimes to 39.3 and I would be very ill, and was seen at 3 different hospitals,but never finding out why this was suddenly happening, I won’t drag on with the whole story,suffice to say after 5 years I had some control back in my life, my skin was so hot at times that it blistered. There is no reason for most of us why this happens ,and we learn to live with it,we have no choice, luckily we are able to “ speak “to people on here and get very welcome support.We are all different and we all react in different ways, Hopefully your dads Consultants will sort out a way through this for him.

[Ledi in reply to jackrussell]

Dear Jack,

Thank you for making me feel welcomed and for sharing your journey. It really helps, it has given us an insight, into it which the medical staff was not able to (so far).

Hope you and everyone in here have a health winter.

We are at the edge of our sit waiting to see what happens next will our dad. It’s a worrisome time until we learn to live with it, I suppose.

Forever grateful,

Ledi

[Zampa47]

Hi, my 15 year old daughter was diagnosed with the same condition as your dad. She is on a lot of medication and will be on it for the rest of her life. She is under a children's hospital in London who are amazing. But very rare, still feel more questions than answers. The medication is to stop the flare ups, so steroids are not needed too often. Hope your dad recovers soon and sees a specialist. Xxx

[Ledi in reply to Zampa47]

Thank you very much for sharing your daughters diagnosis. I hope the doctors continue to research into this and find the answers we are looking for. May god bless her🙏🏻

All the best, Ledi xx

[AndrewT]

Dear Ledi,

I am Prescribed, an Australian sun Block -Spf 50+-, by my Doctor. It is easy, to apply, and VERY effective. The product is called Sun Sense and is available in a 50ml Roll on and a 125ml bottle. The Roll on is, in many ways, easier but not as 'big'. I'm not sure that I have, the Condition as you, I have ANCA Vasculitis, and have had a Kidney Transplant. What's that Phrase....'Exactly The Same, But Totally Different'.....

I would recommend Sun Sense, it's easy to apply, lasts quite some time, is fairly waterproof and IS reliable. Any Drawbacks? It can go, a bit, 'Sticky' after a time and don't get it in your eyes- just DON'T!

I hope that this is of, at least, some help to you Ledi.

AndrewT

[Ledi in reply to AndrewT]

Dear Andrew,

Thank you so much for sharing and for your recommendation. I feel so blessed to have found this page. Thank you to you and everyone that have made me feel so welcomed.

Forever grateful, Ledi!