Testicular vasculitus

[35merlin]

Hi, wondered if anyone has had any experience of testicular vasculitus and the treatment they've had for it?

[Suzym2u Moderator Vasculitis UK]

We do know of cases 35merlin for both Polyarthritis Nodosa and Wegeners Granulomatosis (GPA) maybe someone in this group will answer your question , if not I will see if I can ask someone to talk to you.

Best Wishes

Susan

[35merlin in reply to Suzym2u]

Thankyou

[Dbis22]

When I first presented with WG I suffered testicular involvement which was, at the time, defined as Orchitis. It subsided with Cyclophosphamide treatment and has never bother me since.

[35merlin in reply to Dbis22]

Hi, oh ok thanks, how long roughly did it take to subside?

[Dbis22 in reply to 35merlin]

It resolved fairly quickly - within 10 days of starting drug treatment. My worst affected organs were my lungs and kidneys - that was 5 weeks!

[35merlin in reply to Dbis22]

Oh ok, yes that's quick. Were your lungs and kidneys affected by a different type of vasculitus or was it linked to the same kind that affected your testes?

[Dbis22 in reply to 35merlin]

It was all Wegener's related. My kidneys were the biggest problem. I was a day away from dialysis but my kidney function recovered just in time - on Christmas Day!

That was 23 years ago. My kidney's function well now.ni had a brief relapse involving my eyes 10 years ago and managed to stop Azathrioprine and Prednisolone completely 2 years ago. I am now completely drug free (for WG at least). I see my consultant and have blood tests (ANCA, CRP etc.) every six months so always feel 'safe'. Feeling safe is VERY important!

Hope this reassures you.

Good luck!

[davebw]

Do you suffer with back pain, for many years I have worked as an Osteo, you may find a muscle in your groin is twisted, it affects men more than women, as the pain goes into the testis, mainly one, by having the tendon/muscle manipulated the pain and swelling will go, almost instant,most people are crippled with the pain, why your back ?, its a reaction in the body to twist muscles to protect your spine...

[35merlin in reply to davebw]

Hi, well it's my friend that I'm asking about and he's had a bit of back pain before. Will mention it, thankyou.

[Wellsie]

I have PAN, and just before I was first diagnosed it was like someone had tied a 50kg weight around them and was pulling on the weight for all its worth. I walked like John Wayne. The pain only went when I was on an IV drip with 10mg of morphine every 6 hours; but at that time everything else was hurting too!

It will naturally subside as soon as the right treatment starts and inflammation markers start to drop.

[35merlin in reply to Wellsie]

Hi there. What is PAN if you don't mind me asking? So you didn't need any rimuxitab or cyclophosphamide ?

[Wellsie]

Polyarteritis Nodosa. I've had 34 cyes of cyclo over the last years.