Raynalds with Vasculitis

[Peddy1968]

Does anyone have painful raynalds with their Vasculitis? I have Wegeners GPA and nerve pain in both legs and hands but now the colder weather has started my pain has increased. Im on loads of drugs for all sorts of things including max amount of tramadol, Gabapentine, Nortriptyline to name a few but the hand pain is unbearable at the moment feels like fire. 😣😣

[Hidden]

Hi Peddy,

Are your symptoms Raynauds ( which usually presents with very cold, blue fingers ) or peripheral neuropathy ( which is nerve damage )?

Sorry to be pedantic but they are 2 different things as Raynauds is caused by a problem in the blood supply to the peripheries and peripheral neuropathy by nerve damage.

Have you spoken to the Consultant who treats you for the Vasculitis? What treatment are you on for the GPA?

[Peddy1968 in reply to Hidden]

Hi

Thanks for your reply. I do have peripheral neuropathy so nerve damage Raynolds as you say. I am on Tramadol, Gabapentin, Nortriptyline, steriods, Methotrexate, plus other tablets to support the side effects of these. My toes are purple as blueberries everyday.

[Hidden in reply to Peddy1968]

Have you spoken to your Consultant?

Did you have either Cyclophosamide or Rituximab to induce remission when you were diagnosed with GPA?

[Peddy1968]

Yes i had 6 doses of Cyclophosamide which finished end of June. Now im under 2 weekly blood tests at hospital and my next appointment with consultant is Jan 2018. Worried that going into the colder months that this will get worse with pain but cant see that any more tablets are going to help.

[Hidden in reply to Peddy1968]

If it is Raynauds then Vasodilators can help ( they open up the vessels and improve the blood supply ). Painkillers etc don't help usually. Do you have a specialist nurse you can contact?

[Peddy1968 in reply to Hidden]

Thanks for that i will ask them about this.

[paullevans]

Yes Peddy I do. I have Large vessel Vasculitis with Aortitis I am in constant pain in my Legs and hands my Legs feel like they are burning more evident when I rest, lie down or seated I struggle to get upstairs I also feel my muscles are infected legs heavy and Exhausted, I Sleep as soon a I relax falling asleep even n hospital or any waiting room. when cold I get pain in the centre top of my back and lower right and back of left leg mainly if exposed to cold my fingers really hurt. I tell people and I feel I must be going on too much So I suffer in silence now.

[Peddy1968]

Thanks for the reply this illness is so horrible and you cant explain to others who are not going through it how painful it is. I have the small vein Vasculitis but obviously we have some of the same symptoms. I can also fall asleep anywhere once i sit down and rest. Im off on holiday to Rhodes shortly hoping the warm conditions will make a difference.