Confused ... moreso than ever

[Daggar]

I have a 65 year old neighbour who was diagnosed with cancer a couple of years ago (now in remission) and while helping him out this past weekend I discovered that he was diagnosed with Vasculitis back in 1984. He had purpura, kidney, sinus and lung involvement and shortly after beginning treatment had GI/bowel involvement (bleeding). The puzzling thing to me was during our chat he informed me that he was given antibiotics and prednisone... .no immune suppressants of any kind! He was on pred for nearly 2 years and did the necessary tapering to get off of it.

27 years later he can't ever recall having a "vasculitis event" since the taper.

They considered his organ involvement very serious and he was very ill at the time so I'm amazed that he remained symptom-free that long without immune-suppressants.

Am I missing something?

[NicShaf]

That is amazing, but I think he may just be one of the lucky few who didn't encounter more complications after Pred/ antibiotics. I don't think you're missing anything, I think it's just another example of how differently Wegs or Vasculitis can effect everyone.

[Daggar]

yes... WG, the more you learn the less you know (or thought you knew)!!

[JanW]

There is definitely a subset of patients who are symptom free without meds for many years so it's not unheard of.

My doc has a confirmed WG case (biopsy) that has never been treated medically for it. Her only symptom is occasional nosebleeds.

[delorisdoe]

Is there not an infectious form of vasculitis as well? I would think that you would be treated differently for that and probably not have it again.

[Sangye]

It's odd but doesn't surprise me.

[pberggren1]

God works in various ways unknown to us.

[Jack]

The Vasculitis Foundation lists 15 different diseases and I expect they all have slightly different treatment regimens. I expect some of the diseases can even get better. Wegener's is one of the nastier ones.

[Daggar]

uuuhhh... Jack, John, Leonard.... did your doctors ever say if you were a good candidate for that GI procedure you mentioned in another thread?

[Jack]

After my trouble with bleeding I think I'm going off the idea. I have not had a referral yet and have not chased it because it is not urgent, but waiting lists in the UK are now increasing due to government cuts to health funding (which they deny are being made!).

[Daggar]

Sounds like the UK and Canada have another thing in common -- health care cuts. Our cuts were on the provincial level a few years back and we're still feeling the fallout from that. I never thought that I'd be pro private health care in any form but there has to be a happy medium in all of this? The public system is being stressed to the max .

Good to hear that you don't need it done -- are the milkshakes helping?