Vasculitis in legs

[2stents]

Hi all, in a earlier post I mentioned I had vasculitis in my lower legs, now waiting to see a dermatologist!! I was sat in the sun today and my legs became even more red, is this normal ( not sunburn)

Also I have been getting a small amount of fluid on my shin, my ankles hurt when I'm walking and the back of my knees, I don't know much about vasculitis at all.. I'm wanting to get back to work, but I stand fir 4 hours. Will I make it worse ?

Would appreciate any help to help me understand all of this

Thank you

[Lone-wolf]

I suffer from Rheumatoid Vasculitis. This has affected the nerves in my lower legs mainly with the Vasculitis affecting the veins and smaller blood vessels. These return the blood back to the heart. I used to get pain in my ankles and around the knees but this as largely ceased. One problem does remain and that is standing for a long period. Perhaps you could request a brief period from your work to relieve the pain or if it is possible to have seating while you carry out your work. Both of these work to relieve the pain but in consideration speak with your OH about this. Your employer should make reasonable adjustments to help you in your job where possible. Talk with your manager about this and if you have a union inform them of your situation. VasculitisUK has information on their website that can help you. As an alternative, contact Benefits and Work via their website or even ACAS for advice.

[2stents in reply to Lone-wolf]

Hi Lone-wolf thank you for your reply,

I have angina 2 stents fitted which are 50-70% blocked but blood running through ok. Although I do have angina attacks off and on !

My legs still get swollen and red when I’m sat down it only goes down when I have them elevated which I can’t do at work.

I still haven’t got a appointment for dermatologist and also had a small bleed on the back of brain but told not to worry about it.

So I’m still having test to see which Vasculitis I have.

Sorry for long post

[Suzym2u Moderator Vasculitis UK in reply to 2stents]

Could you chase your referral up and also ask to be put on the cancellation list ?

[2stents in reply to Suzym2u]

Hi suzym I went to gp yesterday he requested more bloods he thinks something is definitely been missed, he also mentioned sending me to see rheumatologist so I’m still no wiser

Although this was a doctor I’ve not seen before

[Hidden in reply to Lone-wolf]

Hi Lone Wolf, it's nice to finally hear from someone with Rheumatoid Vasculitis, I'm sorry you do have this. Usually most posts are from those with GPA or one of the other forms of this disease. but I was diganosed with RV too, I sometimes feel like a forgotten person. Lone Wolf is an appropriate name. All the best.

[Christophene47 in reply to Hidden]

What symptoms do you have for RV? I started out with just upper body involvement; malaise, the usual,

after 28 mo. on pred; currently at 4 mg, thighs, lower legs very painful when moving , even with a few steps of walking, I am uncoordinated and in pain. "Rheumatoid vasculitis" is a broad term?? Wondering if 4mg is not enough??

I worked hard to get down to 4 from 16, and now feeling stubborn about increasing my dose.

[Hidden]

The worst symptom was a disgusting scabby rash on my legs and bottom. It was impossible not to scratch and then it would bleed. As I also have Sjogren's Syndrome I can't work out which symptoms are caused by which condition. Treatment was 40mg Pred daily for 2 years, with 5 x1gram infusions of Methylpred. After 2 years I gradually reduced . Pred so still taking 5mg daily. Also had 2 infusions of Rituximab.