Leukocytoclastic Vasculitis; diagnosed in March 2018 and discharged but still suffering?

Heart health and blood vessels
1

Hi all,

As the title confirms I was diagnosed with Vasculitis earlier this year.

I first went to see my GP because of a rash on my legs - I also experienced some blood and crusting in my nose, although very little. The GP diagnosed an allergic reaction and I was prescribed anti-biotics. As the medication didn't work and the rash got worse I went back to the GP who referred me to a Dermatologist. The Dermatologist did several tests and a skin biopsy and confirmed Leukocytoclastic Vasculitis. I was prescribed Prednisolone which I then tapered off over a couple of months.

Since finishing the steroids and being discharged I still do not feel 100% - I am consistently exhausted, experience shooting pains in my joints (which is no longer just limited to the lower half of my body!) I find it very difficult to carry out simple day to day activities due to the fatigue. I am breathless from walking any distance and suffer a fair bit with what I think is my asthma, especially at night.

I just wanted to check other peoples experiences with Leukocytoclastic Vasculitis as I not completely convinced I am out of the woods just yet!

I have been given very little information from anyone I have seen about Vasculitis and how long it lasts. I am unsure if this is normal following steroids (even though I have been off them for quite a while now?

Any of your own experiences and advice would be greatly appreciated as I feel a little lost!

Thanks

2

They never found the cause of your LV.  Steroids mask the symptoms, which are the clues you need to find the cause.  You will likely have to find the cause yourself.  Start by considering any drugs or supplements that you're taking.  Eliminating my Vitamin D supplement helped relieve some of my symptoms.  In the end, I discovered that mold in my house, which was not visible, was the main cause of my problem.  It took me 5 years of eliminating things from my diet and environment before I stumbled on the mold.  Be persistent.  

3

Take your time, and lower the dosage gradually, and also make sure you take your vitamins. People take this for granted but its extremely important for overall body function.