Cutaneous vasculitis flare up

[johanna-68]

I'm experiencing a flare up so am feeling pretty low at the moment. I am currently taking 20 mg prednisolone pregabalin 100mg twice a day and duloxetine for the nerve pain. I am waiting for an urgent referral to come through to my consultant.

I just wondered if anyone may be able to shed some light on my condition as I remember in my early 20s I had ulcers appear on my legs. The same as I have now. I was very fit at the time and cycled everywhere. I was diagnosed as having pitiriasis licheniod and treated with UVB light,, which actually burns the skin. This was 20 years ago. I'm wondering if this is why they keep ulcerating now because the vessels have been so badly damaged.

I have permanent cold feet and hands. My hands go numb most nights when I must be leaning on the lunar nerve which has been affected.

I have been on mmf, azothiaprine, and dapsone but was unable to tolerate all of theses. I was fine with methotrexate but it did not stop the flare ups. The only thing that seems to work is prednisolone but once below 15mg the ulcers return.

I'm so grateful for this website. To be able to connect with other sufferers is a blessing.

I will post a picture below of my ulcers. If anyone has similar looking ones I would love to hear from you. I will also post a picture of the rash I get

Johanna

[Suzym2u Moderator Vasculitis UK]

Where is your referral too? Have you been given an appointment yet?

[johanna-68 in reply to Suzym2u]

The referral is to dermatology but I'm still waiting for an appointment. I'm also under renal and Neuro teams. I have this twitching on the left side of my face. Do you think this is from medication or the condition.

Thankyou

Jo

[Suzym2u Moderator Vasculitis UK in reply to johanna-68]

I do not really know but it sounds to me as if you should be seen by a multidiscipliary centre you sound a complex case. Have you contacted the VUK Helpline for advice?

[johanna-68]

Yes but a long time ago,, maybe will call again.

Thanks for the support. I guess you just have to take each day as it comes and look at the positives

[asilanna]

Hey Johanne sorry to hear ur having an awful time.i have poly arteritus nodosa, pan for short .it's an autoimmune disease.iv been on all the meds uv been on and only thing that has worked is ritiximub. My ulcers are usually below my knee but lately had them on my fingertips. U have to demand that ur gp refers you to rheumatologist and dermatologist. Iv had this for 10 yrs now.get in touch if u need any help.

[johanna-68]

Thankyou so much for your reply,, I am under a rheumatologist but they haven't offered me rutuximab yet. I'm really trying hard to beat this with changing my diet to vegan, cutting out dairy and gluten. I'm going to see a natural health doctor as I feel like I have exhausted all the maintenance drugs. There must be something that's driving this deep inside my body and I'm just going to try and find out what it is. Asilanna do your ulcers look like mine? Has it affected your nerves also.

Sending much love to everyone trying to cope with this horrible disease x