Prednisone for ever and evermore?

[coffeelover]

If you read my NEW POST from today....I too discuss the prednisone and immunosuppressant...but am thankful for these drugs. Without them, I would be on a trach again and possbily worse.

[JanW]

Back to what Jack said for a minute: I can't be considered in remission without ever having been treated medically. I have yet to be treated medically for this disease (only surgically). Neither surgeon nor rheumy consider me in remission (hence no consideration of surgery to correct my nose). I believe that people will mild disease symptoms can achieve spontaneous remission (and I've discussed that here before), I think that the reason that we know that WG will kill you if not treated is because those are the serious rapid onset cases that are reported. However, that's only my belief -- certainly doctors and probably most people on here wouldn't think so. So without ever having been treated medically for WG my physicians consider me in active flare, although that's not nearly as bad for me as it is for many of you. Their goal would be to have me completely asymptomatic -- no ankle problems, no join paints, no crusting, and they believe at this time, in my case, that can be achieved without steroids and with careful monitoring of chemo-type immunosuppressants.

[Sangye]

It makes sense to me that you could achieve remission without pred, Jan. You don't have wildly active Wegs, which would definitely require it. It's always individual, and this is why we need Wegs specialists to make the call. Even last summer when my lungs were hemorrhaging (considered a severe flare) my doc didn't put me on high-dose pred. There's no absolute protocol for these drugs and there really shouldn't be.

[JanW]

Those were exactly the words my doctor used, Sangye -- "there is absolutely no protocol for these drugs and if someone tries to tell you there is that isn't accurate." The difference between me and the one patient he has that has known WG from a biopsy that he has never treated medically -- she has one symptom (nosebleeds) and has never had positive c-ANCA or P3. I have positives on both, and have had tissue damage to nose and throat, although my biopsy didn't show WG. My doc believes that the challenge with me, should there be one, is finding a drug that is tolerable in regards to my body chemistry, and will still put the disease into a completely quiescent state. Pred is definitely not that for me. It did a ton of damage to my bones. And my nose collasped and throat closed up anyway!

[Sangye]

Those were exactly the words my doctor used, Sangye !

Oh God, I'm channeling MDs.... I'll be driven out of my profession for sure!

[JanW]

Ha! Sorry my friend! You've obviously been influenced by this disease!

[Jack]

Jan, am I reading this right? Your doc has only one other Wegs patient, or do you see someone else as well?

[JanW]

No, he has only one that he has never medicated (she has been his patient for 10 years). He has many current WG patients in various states of disease and remission. And my ENT one of the leading WG saddle nose and SS guys in the US. He sends people to Mayo or to my guy.

[Jack]

Oh I see now. I was concerned that you might not be getting the right treatment, but as Sangye says, there are no rules with Wegener's so you are probably getting what is right for you.

[JanW]

Yeah, plus my rheumy knows that the ENT is going to be asking me every month: what's the treatment plan? and he knows I'm going to the VF conference in Long Beach in the summer...lots of incentive to not look like a fool!